Daily Entries

10-20-14 – Why Can’t I be the Only One?

 

First, some bookkeeping. My creatinine has returned to 1.9. That gives me some wiggle room and means the last reading (2.3) was either temporary, or lab error. It has been 2 1/2 years since transplant and I have been stable for most of the last two years.

Having a reduced immune system can be problematic. For example, I have had a cold now for 18 days. However, it still beats the alternative :).

Secondly, I used to say that I was glad it was me who had health problems. It is easier for me to deal with it than I think it would be for many other people. I know, that sounds arrogant. What makes me so special? It also pains me to see others’ suffer, and for me, it’s become a part of life, so I really don’t let it get me down. In some ways, that’s selfish. Let me address both and then discuss why I am writing this.

First, I have been tested and come out the other side many times. Secondly, I would argue, that my attitude is pretty good. I keep a smile on my face through surgeries, biopsies, rejection episodes, etc. It’s the way I know how to deal with and handle these situations. From my experience, few people are able to, or willing, to do that; either for their benefit or the benefit of those around them.

On the second issue (not wanting to see others’ suffer), that is selfish. I admit it. However, there is also a big part of that feeling which is altruistic and good. It pains me not just because it’s hard for me to see those close to me suffer, but because I know how hard it is.

Anyway, and getting on point, my family got bad news this past month. One of my closest and dearest relatives is battling breast cancer. Her mother is battling it as well. Her husband had a tumor removed from his leg earlier this year and we were unsure for some time how that would turn out (thankfully, that was benign). At the same time, their two daughters (7 and 5) were exposed to rabies and had to have a barrage of shots to make sure they stayed healthy.  Needless to say, they have (and have had) their hands full. It pains me to see someone I love and respect in so much in pain. Ironically, I joked with her husband a month ago when I found out his growth was benign (and before we knew about his wife’s troubles). I told him, “remember, it’s my job to be the martyr, don’t you start having health issues too!” He said that I didn’t deserve it either.

I guess I don’t look at it that way. I don’t deserve it, no one does, but I deal with it. That someone deals and how they deal is what makes them who they are and I take pride in the fact that I feel I have done my best through challenging times.

Back to my relative. She doesn’t deserve it either. However, as much as it pains me to see her go through this, and make the decision to have a double mastectomy, and go through the surgery in the coming weeks, and the recovery, etc. I HAVE NEVER BEEN MORE PROUD OF HER.

She is showing strength, humility, and perspective, that could only make someone proud.

This whole thing makes me think about what people deserve, don’t deserve, and what makes people who they are.

I argue, often times, that I would not be where I am today if I hadn’t developed kidney disease at 23, and if my father hadn’t dropped dead when I was 25. Or what if I didn’t grow up with learning problems? One can feel bad about things that have happened to them and shrivel away. Or, one can try to find the positive. All those things I just mentioned, helped make who I am today. I am proud of who I am today, and know if not for some of those challenges, I would be in a very different place indeed.

As much as it pains me to see my dear relative suffer, in many ways, this is her moment to shine. This is a defining moment in her life. As wonderful as she would be without having do deal with cancer now, I can only hope that she is that much stronger, wiser, and fulfilled in life, after she defeats this.

Of course, I am not suggesting people get sick so they can “define themselves.” Merely saying make the best of what you have dealt to you.

I am not particularly religious, but do ask G-D for strength in times like these. I ask that if you are comfortable with it, that you ask for my family, particularly my relative dealing with cancer, to have strength.

 

 

 

 

8-11-13/Stable, but still tired/Organ Donation/Medications

 

A few things in today’s post.

 

First, I am stable at a Creatinine of 2.1. That’s the good news. The bad news is that I am still stable at a Creatinine of 2.1, which equals an eGFR of 39.  For those outside of the know, that means my one good kidney is operating at about 39%. Really, this is good news as it has been there for 6 months and could remain there for another 10-15 years (g-d willing). The bad news is I was symptomatic at about 45-50% functioning pre-transplant. The main culprit was fatigue, and still is. I still don’t have the stomach, head, etc. problems that I did when I was at 25% and less, but it is still tough.

 

I hate to complain at all, because I know how lucky I am to be alive today and be stable. Instead of dwelling on it, I am back on my diet, after not being great about it for a while, and am exercising pretty hard regularly again.

 

Secondly, I had two people post, or try to post comments, on this blog. One was a guy from Europe who wanted to sell one of his good organs. I did not post that on the site, but he laid out his blood type, his age, and that he was willing to sell an organ to the top bidder.

 

I have not really commented on the political aspect of organ donation. I think it is wrong that some should die because they cannot afford an organ, but also feel it is wrong that people die now anyway because they can’t get one.

 

I know my mother would agree it was hardly the most difficult thing she has ever done donating a kidney to me. And the reward vastly outweighed any short-term pain and discomfort. However, it seems that everyone we talk to is shocked that this wasn’t traumatic for her and that she did it. Honestly, she, and other donors I have spoken with, wouldn’t think twice about doing it again.

 

Most people are just in the dark about this type of thing. We need to educate more and have people value life and people more.

 

I heard a great quote the other day that this makes me think of:

 

“People aren’t against you, they are for themselves.”

 

So true. I imagine most people don’t become organ donors, or willingly donate because they are mean or malicious people. However, more needs to be done to get this issue in the limelight.

 

Other countries have a higher donation rate, by far, because in many you have to opt out of being an organ donor. In the United States, you have to opt in.

 

I have heard that in some states, the donation rate is in single digits, where as some of the countries I mentioned above have upper double digit rates. Across the board, the US is low on the donation totem pole.

 

I remember speaking with one of the nephrologists at Yale who said his own sister in law would not become an organ donor. She feared if she got hurt, instead of saving her, they would harvest her organs.

 

That kind of garbage I hear all the time. It’s indicative of the selective ignorance epidemic we have in this country. That along with NIMBY (Not In My Back Yard) means good people who could contribute greatly to society, die on a daily basis.

 

G-d forbid we have an opt out policy as well. I guess that’s too intrusive. I would love to see politicians visit the funerals of people who died because they couldn’t get an organ, and explain the family that it’s too intrusive to ask people to opt in.

 

After my transplant, me and my wife, Maria, registered to become official donors through the donor registry, not just through a sticker on our license. It was a big drive they had at Yale last year. I am pretty sure they fell short of their goal of 1,000 people (if I recall), but either set a record, or came close, with a good showing. I had not registered prior, because ignorantly, I thought with FSGS I would not be able to donate. I found out that not only could I donate other organs, but I could donate my mother’s donated kidney!

 

I encourage people to write/call their congress person, senator, etc. and voice their concerns. I am sure many have tried, but it would be nice if someone who had experienced it close to home, shared their stories.

 

Okay, enough of that for now.

 

I also got a post from someone who had FSGS and is post transplant. He wanted to know what medications I take post-transplant.

 

I take the following currently:

 

3MG 2X daily of Prograf.

 

500MG 2X daily of CellCept.

 

10MG daily of Prednisone.

 

I should note, most people take a lower dose of Prednisone and a higher dose of CellCept. However, because I had BK Virus, which is less sensitive to Prednisone, they changed it up after being in rejection a few times. This seems to be the ticket.

 

Yale has also prescribed 20mg daily of Lisinopril with the hope that the lower my blood pressure is, the longer the kidney will last. It is also supposed to have a protective mechanism for the kidney that may or may not be related to blood pressure. I took it prior to transplant as well, but a much lower dose.

 

I had been on Bactrim and Valcyte for some time after transplant as well.

 

Please, if anyone has any questions regarding my treatment, reach out, I am happy to share.

 

 

7-8-13/Living with a reduced immune system

I am not scheduled to go to Yale for another 4 weeks, but I thought I would update on some things.

Living with a reduced immune system has its cons.

First, I have been getting head colds frequently this spring. It seems like every 3-4 weeks, I am coming down with something. Nothing too dramatic, but they seem to last a long time.

Secondly, I had to treat fungus on my body. Apparently it’s very normal for people with a reduced immune system to get “fungal blotches.” I had them on my neck, shoulders, and mostly arms. I had to shower with a special soap/shampoo over my entire body, letting it sit for 3-5 minutes each application. I had to use it for 14 days straight and then once a month indefinitely. It took care of the problem and it has not come back. It wasn’t painful or uncomfortable to have the fungus, but it was a little freaky.

The frequent colds and the fungus really bothered me. I had been feeling pretty normal for a while, but sadly, and maybe for the better, I know that’s not the case now.

Everything else is moving along and I will update again when I go to Yale next, or sooner, if anything comes up.

6-4-13/Still Stable

I was at Yale yesterday and my creatinine was 2.3. It was 2.1 two weeks ago and everything else looks good. They do not want to see me for 8 weeks!

I am still tired much of the time, but feel good when I am not, and still do not feel sick when I am exhausted. I just feel really tired and worn out.

They did a thyroid test, but I do not have the results yet. The y just want to rule out certain things.

The doctor said that many people feel almost 100% after transplant, if not 100%. He is open to the idea that some don’t and I am not really complaining anyway. Things are so much better than they were for years leading up to transplant and certainly better than right before transplant.

The BK Virus has almost completely disappeared as of the last blood test and I am hopeful yesterday’s test comes out even better.

I continue to see hits on the blog from people looking to learn more for themselves or for loved ones. I am glad the blog can be a resource to those who need/want it.

5-10-13/Hospital Again, But Things Okay

I spent two days last week in the hospital with a 103F fever. They pumped me full of fluids and everything worked out okay. Just painful and scary for a while.

I woke up with chills and a fever at 4AM and called the Yale hotline. They said to come right to the ER – no need to risk the kidney.

My creatinine was 2.1 in the hospital and 2.2 this week, but the prograf is high again – so they lowered it again and I get retested next week.

One good thing is that the BK Virus is almost completely out of my blood and the biopsy showed none in the kidney. So that’s moving in the right direction!

Overall, I am just dealing with the ups and downs. As soon as I start to feel better, it seems something else comes up. I am still tired much of the time, but in general, cannot complain.

04-17-13/Scare Only – Crisis Averted

My biopsy last week went fine. Really the worst part is waiting the 3 hours after in clinic with a weight on the kidney to keep it from bleeding.

The results are also good. No rejection and lowering the Prograf did the trick. My creatinine is back to 2.0!!!!!

It looks like, even though I was on the same dose of Prograf for 5 months, my body starting metabolizing it differently. Lowering the dose 20% corrected the problem. Prograf is a great immune suppressant, but is also nephrotoxic. To the best of my knowledge, it doesn’t hurt the kidney long-term, but bogs it down some while one is taking the drug.

So I guess the one year celebration was in order after all! I couldn’t be more pleased.

4-8-13/Good News & Bad News

First the good news. Friday marks one year since the transplant. I had a party last weekend to celebrate and many people came to share in the joy with me and Maria.

However, we may have celebrated a little too soon. I was at Yale on Friday and my creatinine was 2.5. Not crazy, but now there is a definite trend upwards. 2.2 after lisinopril, then 2.3, 2.4, and now 2.5. The theory on Friday was that I am not on enough immune suppressants since they lowered the cellcept to help me fight off the BK virus – which is going well.

However, they were thinking of raising the prograf since that has been a steady, normal, level for months. They scheduled a biopsy for this Thursday just to see what’s going on, but without alarm, because whatever it is, it’s  moving slowly.

So, the consensus was that I am not in rejection, but slightly under immune suppressed. Yale called Friday afternoon though and said that the prograf level was actually twice normal and had me lower my dose. I don’t know if that shoots down that original theory because that has been recent (the high reading of prograf), but I am concerned.

All I can do now is wait until Thursday and see what they find.

In the meantime my spirits are good and I have lost 14 pounds on my diet and exercise program since January. No small feet on 10mg a day of Prednisone.

I am going to keep focusing on what I can control and do the best I can to stay positive. Yale will have to take care of the rest.

I will update after the biopsy results come back.

3-12-13/BK Dropping

I heard from Yale late last week, but didn’t have time to write. Frankly, I have been pushing pretty hard (at work mostly) and my body is pushing back. I slept most of Friday, Saturday, and Sunday, and returned to the living today.

The BK Virus dropped substantially last month, after only a small decline the month before.

Things are definitely going in the right direction and I am relieved.

I feel that now I just have to focus on building stamina, losing weight, and continuing to take care of myself so my body gets rid of BK and I can move on with my life!

3-1-13/3 months of Stability!!!!!!!

I was at Yale today and my creatinine was 2.4. It has been around 2.3 since I started the Lisinopril for blood pressure control and kidney longevity.

That marks three months of basically stable kidney function! I am really beginning to feel there is light at the end of the tunnel. I am still tired much, but also pushing harder.

Yale was pleased with the weight loss and urged me to keep it up and stay on top of medications and my routine and not skip visits. Apparently some people feel out of the woods and aren’t as diligent as I am, and plan to be.

The BK Virus test was not back yet, but I will report on that when it is available. That seems like the only really big hurdle I have that is basically out of my control. The big hurdle now is working on losing weight and on stamina. I will keep up on both.

2-19-13/Hanging In

Things have been pretty quiet – a good thing.

I have been feeling okay, with a few bad days here and there. The good days are pretty good, and the bad are mostly just days were I can’t get going and feel super exhausted. I have not had the stomach, head, and other ancillary problems that I had prior to transplant since.

The past few days I have been getting headaches, but I think that’s just a coincidence. I am prone to them, often migraines, and I seem to be able to manage it well. I usually take Frova for the migraines, but my insurance company is being difficult at the moment. I should have that resolved soon.

Otherwise, I have been focusing on things to improve my mood. I am taking care of my pets diligently, working hard at work, and have cleaned up the house a lot. Stuff piled up before and after transplant, and I am trying to create a neater environment more conducive to a better mood and more productivity. My office was a pig pen, and is now neat and tidy, as is my man cave – which suffered the flood last year. Much easier to get work done in my office now (I still work from home often) and much easier to relax in the man cave/exercise room.

I have lost 6 pounds since starting my diet beginning of January and I am exercising regularly. I would have lost more, but when I start a diet, I like to determine my limits for weight loss. So, after losing 3 weeks straight, I maintained for 2 figuring out how hard I need to diet and how much to exercise etc.

I am optimistic the weight will come off and I am back to lifting weights pretty hard. My core strengthening is paying off, but I still have occasional discomfort where the incisions are (my belly), especially when I cough or sneeze. I am hoping that dissipates with time and further strengthening.

Overall, a good report I think and I will write more after I get my next blood test. My fingers are crossed. If the blood test in 2 weeks is good, that will be 3 months stable and I can start to breathe more easily.

1-24-12/Stable

I was at Yale on 1-22-13 and my creatinine was 2.3. I am now on Lisinopril (for about 2-3 months now), for blood pressure control, but mostly because it is believed to extend the life of the new kidney. They are not sure why, but it seems to have a protective effect on kidneys. I took it prior to transplant as well.

The creatinine seems a little high at first glance, and it might be, but Lisinopril although helpful to the kidney, raises creatinine and makes it a little less stable. There are no ill effects long-term, just heightened and less stable creatinine while taking it. I will probably be on it for the life of the kidney.

Yale told me not to come back for a month as everything else looks good. I have also lost 6 pounds since my last visit – a good pace – about two pounds a week.

The challenge now will be to eat more when I start exercising more heavily, as I don’t want to lose faster than the two-pounds a week.

I am settled into my weight watchers online and it is working as it should.

I also think I am building some stamina. My average is feeling about 75-80%, versus 65-75% the past few weeks as I began pushing harder at work, exercise, and play. I think 100% is unrealistic, as does Yale, but my goal is 80-90% consistently. I think as I continue to exercise, and take weight off, that is feasible.

On another note, my wife, Maria, had her Gal Bladder out yesterday (hence writing at 3AM – I am playing nurse). She did great and the surgery went well. She was home 6 hours after the surgery.

She is in some pain and has a lot of discomfort so our roles are switched. I am taking care of her for a change! It’s a weird feeling.

1-17-13/Doing Okay

I haven’t really had much to say, but my sister has been bugging me to update.

I joined weight watchers online two weeks ago, took a week to transition (but still lost weight), and am now in the full swing of things. I am cooking most nights; either grilling lean meat, or making a healthy frozen dinner. The idea is to know what I am eating so I can monitor properly and lose weight.

I am back to semi-strenous weight lifting and building stamina each time I lift. Heavy cardio starts when I am around 200 pounds (right now it is very difficult and wears on me with the added weight), which should be within 2 months. In the meantime, I will be doing light cardio – walking, etc. To get the body ready for more rigorous cardio.

I have been back to working full-time for a while now, and doing okay, but am still mostly working from home. The commute into New York is about 2 hours each way, and being in the office all day, combined with the commute, totally wipes me out. Before the surgery I was barely making it into the office. Now I am getting back into going in more frequently. I can feel my stamina building, but still tend to wear out easily and often. The good news is that when I feel good, I really do feel good. And, when I feel crappy, it’s really just severe fatigue, and not accompanied by the stomach pain, headaches, and general discomfort I had before the surgery.

I should also note that I am going to Yale once a month now (going next week), since I have been stable for 6+ weeks, and am now 9 months removed from the transplant.

In the meantime, my wife, Maria, needs her gal bladder taken out next week. Without being too insensitive, having something sucked out a belly button sounds a lot easier than 80+ staples in the stomach! However, I totally understand her anxiety. She has been in a lot of pain of late and I am optimistic she feels better quickly after surgery. It’s my turn to take care of her for change!

12-31-12/A New Year with a New Kidney

Reflecting on 2012, it had to be one of the longest years of my life.

In April was the kidney transplant, June the ureter revision, followed by continued turmoil as my body, my family, and I, adjusted to having a new organ, new meds, and a new lease on life.

It was tough on me and my family, as well as the doctors and those who followed my story either personally, or via blog.

I am still exhausted much of the time and am not sure what to do about that. I am “supposed” to have adjusted to everything by now, but if that’s the case, it paints a fairly bleak picture in terms of living a normal life.

As I’ve said in the past, this sure beats the alternative, but I still wish things were easier.

I have some resolutions regarding my health:

1. The steroids and lack of exercise combined to help me put on 25 pounds. My goal is to take that off and then some. I am currently about 215 pounds, and want to be 180-185.

I have started lifting weights again and plan to lift 3 days a week and cardio 2-3 as well. I am giving myself until mid-January to be up to speed with that.

I also plan to start dieting – likely weight watchers again, which has been very successful for me in the past, starting by the end of next week. I usually give myself a week to transition and am pretty good once I am in the swing of things.

2. Try to be more available to my wife. Frankly, I have been a drag. I am tired all the time and don’t have much energy to do fun things. I plan on having more date nights and more weekend time with her.

3. Try to make the best of it. If this is how I am going to feel indefinitely; tired much of the time, I need to focus on maximizing the time I am able to work and play. I also need to keep from feeling sorry for myself and work on keeping my chin up and a positive outlook. Of late, that has been difficult, but I will re-committ to that in the new year.

For those who have followed my story along the way, thank you, and I hope you continue to do so.

For everyone, I wish you a happy and healthy new year with all the joy life can bring.

David

12-14-12/Back Home….What/Perspective

Well, I am back home.

Apparently, very rare, but of course the high creatinine reading was due to “lab error.” There is no other way to explain how it dropped back to 2.1 today with no intervention. Additionally, my kidney looked good on preliminary viewing post-biopsy.

I would normally be a little upset about the trauma of the whole situation, but we live ten miles from where the shooting in Newtown, Connecticut took place, and that puts things in perspective. I have friends who live there, and although none of their children were killed, are devastated. I am shocked as well. I didn’t realize how much scarier it is when it hits close to home. Ultimately they will know, I and I will probably know people who are deeply affected.

My thoughts and prayers are with the families of those hurt or killed, and also those who will have to live with the trauma.

12-13-12/Back in Hospital

I went to Yale today for a semi-routine visit – although there was some concern I “might” be in rejection.

My creatinine came back at 3.4! Needless to say they did an immediate biopsy (with results – at least preliminary results – coming tomorrow) and admitted me.

So I am in the hospital at least for tonight. No reason to speculate right now, although rejection seems like the likely culprit.

I will write as soon as I know more and feel up to it. I will save my feelings on all this for a later post, but I will say this is a) getting very old, and b) I wish my life was at least semi-normal. This is not what I invisioned my early 30’s would be like.

12-12-12 – May be in Rejection Again/Still Feel Crappy

Well, I haven’t written in a while. November was tough. Steroid treatments for the rejection were difficult, as usual. I had trouble sleeping and was wired at times, exhausted others, and gained more weight. Thanksgiving is tough because it is the anniversary of my father’s death. It’s been 7 years now. I can’t believe it. Time flies.

Last weeks blood test showed a creatinine back to 2.0 after it has been in the 1.7-1.8 range. We’ll see this Thursday what the story there is.

In the meantime, I don’t feel so sick, like I did before transplant, but I feel worn out much of the time. I think I am 80%, and that’s probably about where I will stay. Beats the alternative, but it’s hard to live a normal life at 80%. The doctors feel I am through the post-surgery period and should be getting to a baseline.

Of course I am working much harder. I also started working out – so there may be some adjustments to the added physical and mental stress of all that. However, I am seeing little improvement at this point.

I will try to write more after the blood test on Thursday, and will keep my fingers crossed.

11-6-12/BK Virus Getting Better, but In Rejection Again

First, the good news. The BK Virus has dropped about 30% in my blood and is not in my kidney.

Also good news: We survived Sandy. No power or heat or running water for 5+ days, but we did better than many. A generator is en-route as I never want to do this again with my health compromised. I need fresh water, the ability to flush toilets, and because of the storm and that we live in the woods of Connecticut, we also ended up with a mouse infestation. We are in the process of eradicating the (potentially) disease carrying vermin, but have a lot of clean up to get to. No power for days and trees falling, wind, and rain, meant the mice came inside. BAD NEWS! Another thing I have to avoid with my compromised immune system.

The bad news: My creatinine jumped to 2.3 and a third biopsy revealed low grade rejection again. The rejection needs to be dealt with, but is pretty free of symptoms. The problem for me is the treatments; massive doses of steroids.

The steroids make me irritable, give me (high) sugar issues, weight gain, and insomnia.

We are going to try to taper off the steroids quickly this time – 7-10 days versus 4-6 weeks to mitigate the side effects.

We also discussed keeping me on 10mg of Prednisone daily vs. 5mg indefinitely. Most transplant patients are older and their immune system doesn’t fight back so hard. Mine does as I am “only” 32.

Also, as the BK (hopefully) disappears, we plan to go up on the CellCept again as well.

I have still been very tired and to say I am sick of the ups and downs and being unable to return to normalcy would be as obvious as saying Mitt Romney had a bad day.

Had 500mg of steroids today and will have 500mg tomorrow, and 500mg on Thursday. Then onto the taper.

Will write more soon.

10-16-12/Not Ready For Prime Time

Overall, I have good news. I am feeling pretty good and my creatinine is stable (last reading was 1.8 – last week). I haven’t heard anything new on BK Virus – not even sure if they tested last week, so I might have to wait until the next blood test.

However, and this is a big however, I am learning quickly that I have to build up my stamina, as I appear to have virtually none. I tried going back to work basically full-time and that worked for a few days – then I crashed! I ended up getting a cold and needed two weeks to recover from that. Now it seems that every time I put in a full day, I need a day or two to recuperate.

Friday I worked a full day and slept 1/2 of Saturday and was awake for about 3 hours on Sunday. Over a 40 hour period, I was awake about 5-6 hours!

Today I had planned to get up early and work, but I didn’t have the energy. Basically, when I push, I feel like I did before transplant; complete and utter exhaustion. The good news is that is not accompanied by headaches and stomach problems.

I am optimistic that if I pace myself I can regain my stamina and at least be 2X what I was energy wise before transplant, which is probably 70% of where I want to be.

It’s hard to gauge right now because I have also been depressed. This may sound funny, but not having major kidney problems and post-surgery complications is kind of a let down. Don’t get me wrong, I am glad things are going well now. However, the past 6 months have been all about surgery and post-surgery, another surgery, rejection, etc. You have to get yourself up to deal with those things. Now doing day to day stuff doesn’t supply the same kind of adrenaline.

It’s similar to a football team that plays great against good teams, but loses against poor teams. They rise to occasion when they have to, but have trouble psyching themselves up week to week.

It’s also kind of a let down because people aren’t calling or coming over regularly. I am just David again, not sick David. Again, relieved, but also I miss the attention a little.

I will try to write more in the coming weeks about how I am adjusting.

10-1-12 – Creatinine Creeping Up/Back to Normalcy

Last week I had my creatine checked and it was 1.9.

No need to worry yet, but we are going to watch very carefully to make sure it doesn’t creep up more, and if it does, be ready to act.

I am pretty much back to work full-time and feel pretty good. When I have a hard time, it’s usually a bad hour or two and I can sleep it off. It’s not a whole day, or week shot, like before the transplant. Additionally, when I feel good, I really feel pretty normal. It’s a good feeling.

This weekend I had a party to celebrate my “new lease on life/inevitable/almost there/return to health.” I also drove on the race track for the first time all year. The season is just about over, but it was great to get out there. Aside from the obvious fun, it is very symbolic and meaningful to me. I have to be feeling good to be able to be out on track and be able to be safe and enjoy myself. I was amazed at my stamina. I used to be shot after a session or two (1/2 hour to an hour of driving in total). This time I was able to drive 6 sessions with no ill effects! I did sleep like a baby last night though.

I am at Yale next week and will report on my creatinine when I know where I stand.

9-18-12/No More IVIG For Me!

I had my second IVIG treatment this past Thursday. Yale gave me 1/2 the dose, benadryl, tylenol, and cortisone.

I was supposed to get the second 1/2 of the dose the following day. Of course, Friday I woke up with a fever and chills – again! I thought, “here we go again!”

Luckily the fever was only around 100 F- not over 103 F, and the chills were minor. I was able to drive myself to Yale after paging them at 6AM to tell them NO MORE IVIG!

After looking at my blood work – they agreed! My white blood cell count was only slightly off this time – but my creatinine shot to 3.3 from 1.7!

They were thinking of checking me into the hospital – but I said NO. I will be fine in a few days. My fever was already down and we had been through this before. They agreed, as long as I came into the transplant floor for bloodwork Sunday morning. I did, and my creatinine was back t0 1.7.

The hope with the IVIG was that it would help me fight off BK Virus. At this point, we are going to have to let my body try its best to fight it off on its own for now. I appear to have a very, very, rare reaction to IVIG that seems to cause more damage than do good.

In the meantime, I am feeling pretty good and am basically back to work full time. It’s nice to have a pretty normal life again.

I still have days when I am tired and feel worn out. However, those are fewer and farther between and I am amazed at how I can handle a full day of doing things without falling apart.

9-7-12/Stable Creatinine!

I was at Yale yesterday and things went well.

My creatinine is stable at 1.6-1.7 – it read 1.7 yesterday. That’s two tests in a row at the lowest I have been out of the hospital post-transplant. My white blood cell count is basically back to normal.

They lowered the prednisone again, and I will be back to my maintenance dose of 5mg by next Thursday. My iron is better, so I cut that dose in half as well.

We are planning an IVIG treatment for next Thursday and Friday. We are splitting over two days and also I will be getting hydrocortisone in addition to Benadryl and Tylenol. The idea being by splitting the dose and giving extra precautionary medicine, I should not have the reaction I had last time and spend 5 days in the hospital.

Other than IVIG – my check ups have been moved from weekly to monthly; a big step. The consensus is I am through the worst of things.

I also got cleared for light lifting – basically I can get back in shape at my pace, but being careful.

I have been walking, but plan to ramp up a little over the next week and start some high rep weight training. Low weight/high repetitions – just to get the muscles working again.

I will report more after IVIG or sooner.

9-4-12/Vow Renewal – A Fresh Start

Sunday I renewed my wedding vows with my wife of 5 years, Maria.

It was a wonderful day and the emphasis was on how much we have been through and how bright the future is.

In many ways, it was really a fresh start for both of us. I have been feeling pretty good, aside from a few things – which I will address momentarily.

People talked about what an inspiration I am and we are as a couple. That was meaningful to us. I am glad my strength, and Maria’s strength, has inspired others. I wish we didn’t have to go through all this to do it, but I am happy we kept our chins up and stayed strong.

It was a wonderful day and I am hopeful that it really marks a new beginning for us both.

Regarding my health, I am doing okay. My creatinine seems stable (I am going back to Yale on Thursday for a normal checkup and to schedule another IVIG treatment for the BK virus) and I feel pretty good. I still have days where I am very tired, but they are fewer and far between. I have started doing light cardio and hope to start lifting weights again soon. I am about 10 pounds over my transplant weight and want to lose 20 in the next year. My prednisone dose is down to 15mg a day and getting lower each week, so my the food cravings are getting, and should continue to get better. I am also building some stamina and should be getting back into shape over the next month or two.

The only thing really bothering me at the moment is the shaking. My hands especially shake much from the Prograf, but it has been worse on the higher doses of steroids. I am optimistic that we can figure that out and that the lower doses of steroids help. I plant to discuss with Yale on Thursday.

I wanted to end with song lyrics that inspire me to take life by the horns and live every day.

This song, “The Dolphin’s Cry” by Live, talks about taking risks and living without fear. You only get the most out of life if you put in the same. “Life is like a shooting star, it doesn’t matter who you are, if you only run for cover, it’s just a waste of time.”

The way you’re bathed in light
reminds me of that night
god laid me down into your rose garden of trust
and I was swept away
with nothin’ left to say
some helpless fool
yeah I was lost in a swoon of peace
you’re all I need to find
so when the time is right
come to me sweetly, come to me
come to me

love will lead us, alright
love will lead us, she will lead us
can you hear the dolphin’s cry?
see the road rise up to meet us
it’s in the air we breathe tonight
love will lead us, she will lead us

oh yeah, we meet again
it’s like we never left
time in between was just a dream
did we leave this place?
this crazy fog surrounds me
you wrap your legs around me
all I can do to try and breathe
let me breathe so that I
so we can go together!

love will lead us, alright
love will lead us, she will lead us
can you hear the dolphin’s cry?
see the road rise up to meet us
it’s in the air we breathe tonight
love will lead us, she will lead us

life is like a shooting star
it don’t matter who you are
if you only run for cover, it’s just a waste of time
we are lost ’til we are found
this phoenix rises up from the ground
and all these wars are over

over
over
singin’ la da da, da da da
over
come to me
singin’ la da da da, da da da
come to me

8-28-12/Lowest Creatinine Yet!

Went to Yale for bloodwork today. My creatinine is down to 1.6!

That’s the lowest it has been since transplant. I’ll take it!

Furthermore, my mother had her 4 month post donation check up and she’s doing great. I am so relieved. With all the trouble I have had, I would be devastated is she had problems as well.

I wanted to share a poem my mother wrote about kidney transplantation. Please see below. It will also be posted under Transplant Poem on my home page.

         TRANSPLANT  THERAPY

For decades we’ve been trying to find out whether

There’s a sure way to bring most families together;

To get them to give love, and compassion, and support

And shun negativity of every sort.

Inadvertently I found a magic wand

That instantly creates a tighter family bond.

When someone gets sick (my son), just do a good deed

And offer the organ (kidney) that he will soon need!

Once you say you’ll donate an organ, it’s no surprise,

Your status goes way up in everybody’s eyes!

(Particularly the loving family members who,

Now no longer feel guilty for not offering too).

I’m told I’m being so brave and noble, so nice!

But for a Mom, not giving is the true sacrifice.

So, now I am protector of the family’s jewel;

The life-saving kidney, so now, as a rule,

All I do is questioned and I have to endure

Well-meaning advice on how best to insure

That I stay in good shape to keep donor approval

(Yes, a board can vote for donor status removal).

As the journey continues for donor and donee

We forge our, now conjoined, medical history.

We wait for my approval as a donor – and wait,

And wait, as well, for a kidney transplant date;

Which won’t come till kidney function is so low

That the recipient’s other organs start to go.

We give blood and urine and have lots of EKG’s

As they test me for every documented disease.

A social worker must deem me “mentally sound”

To do what I need to, to keep my son around.

We analyze each blood test with close attention

Like brokers with stocks at an investment convention.

Through years of uncertainty, the family gamely tries

To deal with the lows as gracefully as the highs.

We all make sure that we stay in closer touch;

Emails and calls don’t go unanswered as much;

Everyone wants to know all the lab reports;

We follow transplant stories as avidly as sports;

We’re now experts on all things kidney related

And spout medical lingo till our friends are sated!

As my son’s kidney function steadily declines

And he confronts a few medical land mines,

The whole clan goes into support overdrive,

Like cheerleaders, willing the kidney to survive.

But as transplant day inevitably draws near,

Our loved ones are overcome with devotion and fear

As it sinks in –  this is not a TV drama

But an impending multiple body trauma.

After surgery, everyone rallies around;

Texts and emails are flying; good feelings abound.

Feuds are forgotten as they share each update;

Relief and joy let old hostilities abate.

Relatives can express their love and gratitude,

Even those not known for a caring attitude.

Our recovery is bumpy and way too long

But family togetherness and spirit stay strong.

I don’t recommend this for treating family woes

On a regular basis, though everyone knows

The prospect of losing someone who’s loved dearly

Quickly makes you see life’s priorities more clearly.

For us, a kidney transplant turned out to be

The ultimate in extreme family therapy.

It gave us a mental as well as physical fix

And greatly improved our family dynamics.

I know there are definitely better ways

To get closer, that don’t involve hospital stays.

So donate, cause it’s an amazing thing to do,

But don’t be surprised if some benefits accrue;

Like reducing petty family tension and strife

And deepening connections, all while saving a life!

Donate to a stranger – keep another family whole

While filling your heart and inspiring your soul!

Who knew, when you give a part of yourself, that you’re

Going to end up more fulfilled and “complete” than before!

8-23-12/Good News, AKA Fast Turnaround

Yale went as well as can be expected today.

Creatine is stable around 2.0. My white blood count is 5X what it was when I went into the hospital on Friday at 2.4K (vs. 500). NO MORE MASKS! I can also go out in public! Awesome.

My wife and I are renewing our vows 9-2-12 and celebrating a new lease on life. It will be our 5th wedding anniversary. Yale and I both felt it was best to save another round of IVIG for AFTER that special day.

So bloodwork next week anywhere, and then back at Yale after the vow renewal.

The consensus on the glucose spiking is that it is the high doses of prednisone. However, it is not out of the realm of possibility that I develop more permanent diabetes. Basically, as I have said before, transplant is not a fix, it’s a treatment option. It is not without massive risks – i.e. diabetes.

I am not going to worry about it until I have it and assume, like Yale does, that it goes away as we taper off the steroids.

Of course, Yale is perplexed that I seem to get reactions that no one gets and/or get everything. However you want to look at it.

I had intended this blog to help guide people through transplant, but the longer this goes on, the more I realize I am a bad/worse case scenario. Great resource, because I seem to experience everything (and often multiple times – i.e. biopsies, cystoscopies, etc.). However, I am not necessarily painting an ideal picture.

I am currently dealing with the fact that despite everything I have been through, I am still going to be sick forever. Sickening and saddening.

I’ll keep on trucking and keep my chin up though – no worries.

8-21-12/Home, But Still, Uncertainty Remains

I am home!

My white blood count was stable around 1K, but my creatinine was back down to 1.9. My blood sugar is still high – but mostly very high 6-10 hours after Prednisone – still a high dose. That seems to indicate that is the likely culprit.

They decided better to quarantine me at home and have me back to Yale on Thursday for tests then keep me in the hospital. I agree.

I hope to get a good nights rest tonight!

In the meantime, we are still considering doing another IVIG treatment, if not more. However, with more precautions. This will be discussed in more detail on Thursday. It also remains unclear what exactly caused this whole thing in the first place.

I think that’s part of the whole process. There is a lot of unknown and you have to learn to deal with it.

8-20-12/Part 2 – Good News!

PART 2

News this morning was much better. Blood sugar is basically normal, white blood cells are 1K+, and creatinine is 2.2!

Biopsy results show no noticeable change from 2 weeks ago.

In other words – this was the perfect storm. One of the nephrologists pointed out that my blood count was slightly off before the IVIG treatment. The thought is I was fighting something and the IVIG pushed my body over the edge. The blood count and glucose was just an extreme response from my body. The creatinine was the same.

The said I could go home today, but would rather wait until tomorrow and see another drop in creatinine and another rise in white blood cells. I agreed.

The issue now becomes do I do IVIG again? The thought is that I would, but smaller doses split up and with more preventative medicine. Remember, the reason for IVIG in the first place is BK Virus, a serious problem. We don’t want that to win because we didn’t try. We also don’t want to make rash and somewhat random decisions. They have never seen a reaction like this to IVIG. There was likely something else at play.

In the meantime, I feel better. I am looking forward to going home and trying, again, to return to a somewhat normal life.

8-20-12/Bad News and Another Biopsy

Yesterday (Sunday) was hectic.

My white blood count was up to 700 from 500, but still very low. Additionally, my neutrophils were .2, versus a healthy 1.0+. These are a subset of white blood cells. The only good news here is that the blood doctor (hematologist) felt that for the most part, everything else looked okay. Iron was a little low so they are testing that off this mornings blood sample. He did not think I need an injection to stimulate growth of white blood cells or a painful bone marrow biopsy. Both had been brought up the day before.

My blood sugar non-fasting is down from 350 several days ago to about 150 now. Still a little high, but dropping, and no insulin needed. I am optimistic about this at the moment.

Meanwhile, my kidney function had not improved. My creatinine was 2.5 – and that’s fully hydrated on IV fluids, no fever, etc. Not good.

The nephrologist (one of the two I see regularly) was very concerned. He felt that things should have improved much on this front. He did not want to wait another day and risk damage/more damage to the kidney. So we decided on another biopsy. There was no transport available and we needed the sample to pathology by 12PM. It was 10AM. The nephrologist and his resident personally wheeled me to ultrasound, performed the biopsy, and brought me back and brought the samples to pathology.

We hope to get results today and also a better creatinine number. We’ll see.

In the meantime, I am stuck at the hospital indefinitely. We need to know what is going on and I need white blood cells to fight disease. Otherwise, things are great.

Will report more when I know more.

8-19-12/In Hospital

I haven’t written in sometime. First, there was little to report. Now, sadly, there is much to report.

I started my IVIG treatments on Thursday. Everything seemed to go fine with the treatment, but by 9PM that night I had chills and a severe headache. I ended up developing a 103 fever over the night and was literally delirous and in and out of consciousness. I was aware that I was disoriented, but not enough to do anything about it. I couldn’t wake Maria or call my mother, etc. I certainly wasn’t able to call Yale as I was totally incoherent.

Friday morning Maria drove me to the ER at Yale after calling transplant. They were ready for me and got my fever down. By mid-afternoon I was coherent again, and much less scared. However, they admitted me for precautionary reasons and drew a lot of blood.

Friday night my blood sugar spiked at 350 – it’s never been that high – and they had to give me insulin injections. The sugar is still high, but has dropped and is now below 200 non-fasting. They are optimistic that I didn’t become diabetic overnight and that my system is in shock.

My creatinine also spiked – to 2.7. It was down to 2.4 by Saturday, but obviously still very high.

Worst of all, my white blood cell count, which is supposed to be between 3-4K, is around 500! I can’t leave my hospital room without a mask and no one can come in to see me without one.

The consensus from transplant is that I have “syrum” sickness from the IVIG. Of course, the doctor said he hasn’t seen it this bad in years. The blood doctor was less certain, although agreed it was a weird coincidence if not the IVIG. He told transplant to reduce my immune suppresants so my blood count can recover. Not sure what they are going to do yet though, since I am still fighting rejection.

I told them I am not sure about doing IVIG again. I met with the doctor and pharmacist and they said they can split the dose over a day or two and give smaller doses. We also need to rule out that it’s not something else and are waiting for a lot of lab results. Still, that was one of the scariest nights of my life – being that sick and dissoriented – and since I am still in the hospital and totally messed up, am not anxious to do this again. They do seem to understand that.

When I know more, I will try to report ASAP, but things are a little hectic now. I am scared and frustrated with another setback.

8-09-12/Good News on Rejection & BK Virus Treatment Options

I needed a good visit at Yale today. Things have seemed bleak and I have been very down. So much so I haven’t even bothered posting. I also have been having side effects from the steroids (high blood pressure, trouble sleeping, agitation, etc.). In fact, I haven’t slept in over 30 hours at this point and would best describe my  mood as combination of depression and apathy.

When I went into today, I described my mental state and basically stated that I needed something positive. Even something small – like I can start mild exercise – something to take control. I can do that. But I have better news.

The nephrologist described that it can take a while for things to improve even from mild (1A) rejection. We were all shocked when the creatinine came back at 1.8! It had been 2.2 – 2.3 for a while now. He described it as “we are winning,” but was clear that we are not out of the woods. I’ll take a set and worry about winning the match down the road!

He reiterated that BK Virus is in the kidney, but not currently doing damage (or noticeable damage anyway). Putting the creatinine and the BK Virus together means that even if it starts doing damage, we are likely starting with a healthy kidney. So there is a margin of safety.

We discussed treatment options for BK. There is an anti-viral that works well with BK Virus but, of course, is nephrotoxic. So that leaves IVIG (IV Gamma-globulin) treatments. He, like the other nephrologist, is not blown away by the efficacy they have seen with the treatment, but it is usually used as a last resort.

He is going to check with my insurance and try to pre-approve treatments. They are expensive, there are many, and they are long – about 6 hours per treatment. He made it seem a little like we were grasping for straws and that there might be time to let things run their course a little. However, was very open to the treatment if I was.

I am hopeful, even if it’s not definitively what keeps BK from hurting the kidney, that it a) helps and b) helps set a standard for helping others.

I just need to figure out how to kill time during treatments and balance my ADHD!

In the meantime, I am back on Valcyte and blood pressure medicine.

8-5-12/Hope for me and for others? Incision Pictures

I was at Yale Thursday, Friday, and Saturday, for massive steroid (prednisone) treatments. I will spend the next three weeks tapering off from 60MG a day down to 20mg a day. My previous maintenance dose was 5mg daily. The last three days I got 500mg daily through IV.

The steroids caused a fast heart rate and hunger, but nothing serious.

Additionally, my body – now 5 months removed from exercise feels very weak and achy. I am going to see if I can start walking on the treadmill to get some movement and strength back.

We had spent much time speaking with the team at Yale about treatment options for BK virus. As I have mentioned, the treatment for rejection – reducing my immune system can make BK stronger. Even though they are hopeful the rejection will not cause permanent kidney damage, the BK definitely can.

There are a couple of treatment options for BK. First, they can use strong anti-viral medication. This has proven unimpressive. The other, more benign, and potentially more effective treatment is a transfusion/infusion (not sure what the right word is) of healthy hemoglobin that conceivably contains anti-bodies to BK virus. Most people have BK and suppress, which I cannot do right now.

Both of these treatments are usually used as last resorts, when they cannot control the virus. Remember, only about 12% of transplant recipients get BK in the kidney – where I have it – and much fewer have rejection simultaneously.

What we discussed at Yale is doing the transfusion/infusion sooner rather than later. This has the potential to keep the virus from gaining strength and may help create a new protocol for similar situations in others.

I have always hated being a guinea pig, but doing it willingly seems different. Here I can help myself and potentially others. That seems like a potential win/win.

I am not supposed to be back at Yale until Thursday, but will try to get more info prior to that visit.

Finally, I am adding a new page on the blog with pictures of the incisions/holes, etc. as things are healing pretty well at this point.

8-2-12/Better News

I started steroid treatments today – I am in rejection and I do have BK Virus in my kidney.

However, it is a best of the worst case scenario right now.

First, they believe my creatinine is high because of inflammation in the kidney – not necessarily, or even likely, permanent damage. Therefore, it  might be reversible and at this point, are optimistic that it is.

Secondly, the BK is in the kidney but has done no visible damage yet.

That’s the good news. The bad news is that it’s still a balancing act from here on out. Keep me from going back into rejection, but treat the BK Virus.

Initially, with the course of steroids I will be on in the short-term, the virus may get stronger. However, rejection will likely be less likely after we knock this bought out.

I will write more when I know more.

In the meantime I have to be on the look out for agitation and watch my sugar intake because of the steroids.

8-1-12/Bad News

One of the nephrologists at Yale called today. It’s never good when the doctor calls instead of one of the nurses.

There is already damage to my new kidney. They know I have BK Virus, but it is unclear whether the damage is directly related to that alone, however.

The thought is that I might have “mild rejection” that was not really deductible without the biopsy. If that is the main cause, then the BK might not have done much or any damage to the kidney yet. That’s the best case scenario.

The second best case scenario is that the BK Virus is moving aggressively and does explain the damage to the kidney.

The worst case scenario, and what they fear, is that both are at play.

The problem either way, and definitely if both mild rejection and BK Virus are hurting the kidney is that the treatment for one aggravates the other condition. If they lower the immune system to treat rejection, the BK Virus will likely get stronger and be in my system longer. If they increase my immune system to treat BK, then rejection becomes worse, or more likely at the least – assuming it’s not happening now.

It’s a very tricky and crappy balancing act. The doctor said to hope for just rejection at this point. That can be treated well and quickly. Either way, if that’s hurting the kidney, it needs to be dealt with. BK is more of an intermediate to long-term threat. Rejection is an immediate threat.

It seems every few weeks, they are shortening the life expectancy of the new kidney. We had originally hoped for 15+ years. Then it was 10 years. Now it’s much less. Additionally, with my creatinine at 2.2-2.3 now, and evident damage to the kidney, the best I can hope for is to stabilize at 35-40% kidney function. That leaves much less margin for error on a go forward basis. Worse, if the damage continues while they try to balance the (potentially) two culprits, that margin of error shrinks. We know it CANNOT get better.

I am getting really sick of being in the less than 3-5% range. 1-2 people  a year at Yale (out of 100+ transplants) has to deal with this scenario. 1% have a ureter revision. 2,000 people a year get FSGS. Catch my drift?

I asked about the FSGS re-occuring and the doctor reiterated that was a long-term problem and there was no reason to even worry/think about that now. Additionally, the results on that won’t be in until the end of the week at the earliest.

In the meantime, my mother is devastated. I spent much of today consoling her. She hasn’t made peace with this situation at all.

Me, I am basically apathetic at this point. What can I do? What’s the worse thing that happens? I die? In my mind what I have been going through pre and post-transplant is worse than that. I imagine my feelings might change, but overall, I am distancing myself more and more from this cluster-f***.

We’ll know more tomorrow and I will update. I am on call to be at Yale in the meantime.

I have three songs for today. The first two are both off Slash’s (of Guns N’ Roses fame) second album (released recently). One seems to have to do with an unnatainable love, while the other is more a macro-political song. However, I think both are applicable today. The last is by Alice in Chains.

No More Heroes by Slash

Took a shot in the dark

Though the aim was true

Still it missed the mark
As we wait for a hero we can’t find
Now I know, now I realize
It’s a hard line
Once you cross you’re on your own
But I won’t lie, I’m not satisfied
We can’t wait much longer

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

Once again, you let us fall
Still you ease our minds and are sure to stall
In the end, everything’s gonna be alright
But they won’t
Now I realize, these are hard times
We can’t fight them on our own
But I won’t lie, I’m not satisfied
Who will save tomorrow?

When your heroes, turn to the enemy

And there’s nothing left to hold

When your heroes, give only apologies
I won’t deny it leaves me cold

Hope we’re still alive
Still alive
Oh, oh, oh
We’re still alive
Still alive in the end

(Solo)

Now I know
Now I realize, these are hard times
We can’t face them on our own
But I won’t lie, I’m not satisfied
Who will save tomorrow?

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

If we’re still alive
Still alive
Oh, oh, oh
If we’re still alive
I would never doubt you again

Far and Away by Slash

Across the long last great divide
The distant longing never dies
And all the pain of a dream that was never known
Never fades, no
That’s alright, someday I’ll find you
I tell myself most every night

You seem so far and away
Another life, another time and place
Oh, oh, if only I could find you
So far and away
It’s something lost I never will replace
It seems so far away

A love I’ll never come to see
And though I’ve tried can’t let it be
My God, it aches for the longing it only grows
Every day
I only bleed when I’m all alone
They say in time give it tomorrow
But to me that’s just a lie
You seem so far and away
Another life, another time and place
Oh, oh, if only I could find you
So far and away
I’m waiting on a miracle today
It seems so far away

(Solo)

So if you hear this last refrain
I hope you know that I still wait
I can’t let go, all I need is a miracle
And today all I need is a miracle
Oh, oh, oh, yeah

It seems so far and away
Another life, another time and place
Oh, oh, I hope these words will find you
So far and away
It’s something lost I never will replace
No, I’m begging for a miracle today
Hey, hey, hey

(Solo)

And I wait so long
And I wait so long
So alone, so alone

Rooster by Alice in Chains

Ain’t found a way to kill me yet
Eyes burn with stinging sweat
Seems every path leads me to nowhere
Wife and kids household pet
Army green was no safe bet
The bullets scream to me from somewhere

Here they come to snuff the rooster, aww yeah, hey yeah
Yeah here come the rooster, yeah
You know he ain’t gonna die
No, no, no, ya know he ain’t gonna die (x2)

Walkin’ tall machine gun man
They spit on me in my home land
Gloria sent me pictures of my boy
Got my pills ‘gainst mosquito death
My Buddy’s breathin’ his dyin’ breath
Oh god please won’t you help me make it through

Here they come to snuff the rooster, aww yeah
Yeah here come the rooster, yeah
You know he ain’t gonna die
No, no, no ya know he ain’t gonna die

7-31-12/Kidney Biopsy

Alfred Hitchcock used to say, “the anticipation of the bang is worse than the bang itself.” He made a living off that premise, and I lost a lot of sleep last night over the anticipation of the biopsy today.

I have to admit, it was pretty benign. Given everything I have been through, I imagine I have a higher tolerance for pain/discomfort/and dealing with large needles headed for my abdomen, etc. than most. But, even for those that don’t do well with these things, I don’t think anyone should sweat this.

The shots to numb the area sting for a second or two and that’s about it. Sometimes you feel pressure and you hear and feel (not in the form of pain) the biopsy needle grabbing a piece of kidney. They took two samples and then came the worst part. I had to sit for two hours with a 10 pound weight over the kidney to stop/prevent bleeding. Then had to wait another hour after. Thank G-D for IPAD’s. I get bored very easily.

The hope is that they find nothing on the biopsy and expect me to have a higher baseline creatinine. However, given the now higher levels of BK Virus in my blood, they would not be surprised to find evidence of that. In the meantime, my creatinine was 2.2 today, virtually unchanged/within lab error from last weeks reading. However, the progression upward tends to be a blip or two up every few weeks.

They gave me the option to do the biopsy next week, but had to by then. I figured, “let’s just get it over with.” The waiting and not knowing has got to be worse than the procedure itself.

I should have preliminary results in the next 16 hours and formal/more in depth results by the end of this week/early next week.

7-30-12/Biopsy Tomorrow

Tomorrow morning is the kidney biopsy. As most of you know, my creatinine has been creeping upwards over the past few months. Not a good thing. It could just be the BK Virus causing it, but they want to be sure we know what we’re dealing with.

I am really down. It seems that every time things are starting to look up, I get another blow.

At least after tomorrow, we’ll have a better idea of what we are up against.

I have seen searches on the blog about pictures of the incision(s). I will have Maria take a few pictures of all the scars and post a picture.

7-26-12/Biopsy Moved Up

After re-examining the trend, and recognizing that my creatinine is now 2.3, Yale has decided to move my biopsy up to this Tuesday, 7-31-12.

They said I will have preliminary results that evening, but it will take some time for more thorough results.

I would be lying if I said I wasn’t concerned. I am not looking forward to the procedure, although it is not supposed to be too bad. But I am really ambivalent about the whole thing. Part of me wants to know what’s going on – and part doesn’t. I just want everything to be okay, but I don’t think that’s in the cards.
So much for my two week vacation from Yale! Try one day!

7-24-12/Ureter Good, Creatinine High, and Bravery

Things at Yale went good and so/so.

The ultrasound was good, so it appears that the Ureter Revision was a success. Thank G-D.

However, my creatinine is still high – 2.3 now. They want to give me a “vacation from Yale” for two weeks, but unless the creatinine is substantially better, have a biopsy scheduled for 10AM on 8-7-12. They perform biopsies at 6 months – so mine will be a little early. It’s a little scary, but not supposed to be nearly as bad as most of what I have already been through. Not to say that makes it pleasant.

Of course, while at Yale, I got a call from security company telling me my house was flooding. What must have been minutes after I left for Yale, the line to the dishwasher blew out and flooded my finished basement. That’s basically my living room. The fire department came and my neighbor let them in so they could shut off the water. So, damage was mitigated. But I need this like I need kidney disease. I already paid my deductible and my insurance company already has people in the house draining water and assessing damage. I couldn’t ask for more from them, but wish I didn’t have to ask at all!

I also wanted to talk a little about bravery/courage in this entry.

People keep telling me how brave I am – and I keep telling Maria how brave she is. However, both of our consensus is they have to do what they have to do and we don’t have a choice – so why sweat it. Do other people kick and scream? It’s not like I am making a point of “taking it like a man,” it’s merely that I don’t see the point in making it harder on me or the doctors.

I guess bravery can be measured in how one handles themselves, not just in what they choose to handle, but in things they have to deal with. In that sense, I am brave, as are many others that I see regularly at clinic and share stories with.

I found a good song that relates to this topic.

It’s by Matisyahu and it’s called “Live Like a Warrior.”

Feel like the world don’t love you
They only want to push you away
Some days people don’t see you
You feel like you’re in the way
Today you feel, as if everyone hates
Pointing their fingers, looking at your mistakes
You do good, they want great
No matter what you give they still want to take
Give your love and they throw it back
You give your heart they go on attack
When there’s nothing left for you,
Only thing that you can do, say

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Fight like a Warrior,

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Live like a Warrior

Some things you should let go, there only gonna pull you down,
Just like weight on your shoulder they are only gonna make you drown
We all swing high, we all swing low,
We all got secrets people don’t know
We all got dreams we can’t let go,
We want to brave, Don’t be afraid
Ohh

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Fight like a Warrior,

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Live like a Warrior

Your heart is too heavy from things you carry a long time,
You been up you been down, tired and you don’t know why,
But you’re never gonna go back, you only live one life
Let go, let go, let goooooo, Let go, let go, let goooooo,

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Fight like a Warrior,

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Live like a Warrior

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Fight like a Warrior,

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Live like a Warrior

7-20-12/Hope and Clarification & Life Expectancy

I had an ultrasound at Yale today and it looked pretty good. They want to repeat Tuesday, but if that looks unchanged, then we can celebrate. This seems to imply that the second surgery (the ureter revision) was a success, making the transplant a success as well.

My creatinine is 2.2 – the highest it has been post-transplant, but it’s been there before. There is still hope that things stabilize, but even if that happens at a high creatinine level, it’s not the end of the world.

I have completely stopped wetting myself, indicating that the stent was the culprit and nothing more serious was at play.

I spent a long time with the head nephrologist today discussing BK Virus.

First, some points of clarification. I have it in blood – which 20-25% of people do after transplant. It is not clear whether it is in the kidney yet. I will be biopsied soon and that will be more conclusive. In about 60% of cases the virus does reach the kidney – or about 10-15% total.

Yale is exceptionally confident they can manage the virus and eradicate it. They also do not anticipate an acute rejection episode. However, there are some caveats.

First, it can take up to year or so to eliminate the virus. Secondly, it can become problematic for me to go back up on the immune suppressants – for fear of reactivating BK. Third, the disease can do some damage even in a year.

The question becomes how does all this affect the long-term viability of the transplant?

The answer is not so clear. The reduced immune suppressants can lead to a shorter life of the kidney, as can the virus. Either way it seems there will likely be some effect on the longevity of the new kidney. How much is hard to quantify.

The nephrologist argued that given my life expectancy I will likely have a second transplant. He wants this one to make it 10+ years and assumes the second will last the rest of my life.

I have neglected to discuss life expectancy before, partly because it is depressing.

Basically, I had FSGS (a form of kidney disease) for 9 years. That did unquantifiable amounts of damage to my body. Secondly, I am on immune suppressants and have a foreign organ in my body. That does unquantifiable amounts of damage.

The hope is that I make it another 30+ years or so. I am 32 now and the hope is to make it to 60-65.

Many people seem to think transplantation is a fix, and not what it is, a band-aid – a way to stop the bleeding and imminent death.

It is a treatment option – not a cure!

I don’t know if it makes them feel better, or if they are just ignorant. Either way, if you have kidney disease and or/have been transplanted, CARPE DIEM! Enjoy the time you do have – as you already know – it’s precious.

I close with two Bon Jovi songs. “Everyday” and “It’s my Life.”

“Everyday”

I used to be the kind of guy
Who’d never let you look inside
I’d smile when I was crying
I had nothing but a life to loose
Thought I had a lot to prove
In my life, there’s no denying

Goodbye to all my yesterdays
Goodbye, so long, I’m on my way

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday

Change, everybody’s feeling strange
Never gonna be the same
Makes you wonder how the world keeps turning
Life, learning how to live my life
Learning how to pick my fights
Take my shots while I’m still burning

Goodbye to all those rainy nights
Goodbye, so long, I’m moving on

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday
Hit the gas, take the wheel
I’ve just made myself a deal

There ain’t nothing gonna get in my way
Everyday

Goodbye, so long, I’m moving on

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday

I, oh I, oh I, I’m gonna live my life everyday
I (gonna touch the sky), oh I (spread these wings and fly), oh I
I’m gonna live my life everyday

“It’s My Life”

This ain’t a song for the broken-hearted
No silent prayer for the faith-departed
I ain’t gonna be just a face in the crowd
You’re gonna hear my voice
When I shout it out loud[Chorus:]
It’s my life
It’s now or never
I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just wanna live while I’m alive
It’s my lifeThis is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow’s getting harder make no mistake
Luck ain’t even lucky
Got to make your own breaks[Chorus:]
It’s my life
And it’s now or never
I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive
‘Cause it’s my lifeBetter stand tall when they’re calling you out
Don’t bend, don’t break, baby, don’t back down[Chorus:]
It’s my life
And it’s now or never
‘Cause I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive[Chorus:]
It’s my life
And it’s now or never
‘Cause I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive
‘Cause it’s my life!

7-18-12/Cystoscopy #2

The stent came out today via cystoscopy. It wasn’t as bad as last time because I knew what to expect.

As I’ve said before – it’s uncomfortable for the duration, but only really painful for 2-4 seconds. During that time it’s like someone is standing on your bladder.

This time it took 2+ minutes as a) the stent was difficult to find and b) I asked the doctor to look around to make sure the stent was the culprit regarding my peeing constantly.

He seemed to think it was and I already have seen a vast reduction in symptoms. However, he said it might take 3-4 days to clear up.

Now the big hurdle is Friday. Friday I go to Yale, learn more about BK Virus, and most importantly, have an ultrasound to make sure the kidney is draining. If it is I am going to celebrate. Otherwise, there will be more tests, procedures, etc. However, I am optimistic. I don’t know why, but I am.

7-17-12/BK Virus pt. 2

I spoke to Yale today and feel a little better. First, they moved my clinic appointment to Friday. The stent comes out tomorrow, so by the end of the week we should know how the ureter revision went.

We also spoke about the BK Virus. It sounds like two medications (prograf and prednisone) is usually sufficient to reduce the immune system and prevent rejection. I take three as an added precaution. They are reducing and potentially stopping one (cellcept) until BK clears up – which can take months. We went over signs of rejection – reduced urinations, swelling, pain in the area of the new kidney, etc.

It sounds like when caught early, the efficacy of treating BK is high and the risk of rejection although higher, is not sky high by any means.

I will be watching the situation closely as will Yale.

7-16-12/BK Virus

Today was supposed to be a day I didn’t hear from Yale. I had clinic scheduled for Thursday and my cystoscopy got moved to Wednesday. So other than the delight of waiting for that procedure on Wednesday things were supposed to be low-key.

Not so much. Clinic called today and left a message as I was taking a nap. I have tested positive for BK Virus.

I did some reading and pieced together what I have heard from clinic in the past as I cannot speak with them until tomorrow at the earliest.

BK Virus is a virus that is found in 80+% of people, but lies dormant in those with a healthy immune system.

5-8% of kidney transplant recipients (from what I have read) have the disease become active. I am one of those lucky few.

Here’s the best part – it attacks organs, namely the kidney. If untreated, it leads to graft loss in 30-60% of cases. Regarding that, don’t you love how researchers say “graft loss” as opposed to what it is – a new kidney in a human being. Graft loss = transplanted kidney failure.

So of course they will treat it right? Well, the only real way to treat it is to have the body’s immune system repress the virus. How do you do that? Good question. You reduce the immune suppressants that are preventing rejection in order to hopefully get rid of the BK without having the body reject the kidney.

Sounds like a fun game, huh? The only problem is it’s my F’ING LIFE they are playing with. Not a mere “graft.”

I will write more about it when I know more. However, what I have read is not painting a rosy picture.

In the meantime, my stent comes out on Wednesday and we’ll see soon if the second surgery (the ureter revision) was indeed successful.

My song for today is “Comfortably Numb” by Pink Floyd. I think it’s self explanatory.

Hello,
Is there anybody in there?
Just nod if you can hear me
Is there anyone home?

Come on
Now
I hear you’re feeling down
I can ease your pain
Get you on your feet again

Relax
I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move
But I can’t hear what you’re saying

When I was a child I had a fever
My hands felt just like
Two balloons
Now I’ve got that feeling once again
I can’t explain
You would not understand
This is not how I am
I… Have become comfortably numb

O.K.
Just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working
Good
That’ll keep you going through the show
Come on
It’s time to go

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move
But I can’t hear what you’re saying

When I was a child
I caught a fleeting glimpse
Out of the corner of my eye

I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I… Have become comfortably numb

7-12-12/3 months & Staples Out

Today marks the 3 month anniversary of the transplant surgery. What a bumpy road!

It feels like much longer as the struggles have been great.

On the upside – all 49 staples came out of my abdomen today. It was a dramatic turnaround – the antibiotics helped me avoid an infection and actually things healed faster than they expected. All good.

Additionally, my creatinine was down to 2.0 – within range of my 1.8-1.9 new normal range. So that seems to be stabilizing.

I am still tired and had to drop off a stool sample as I have been having stomach issues since I left the hospital.

I am also on prescription maalox several times a day as I was just healing from the assault on my stomach from the first surgery when the second surgery hit. That pushed it over the edge. I couldn’t eat without pain and have lost 5 pounds in 2 weeks. That medicine seems to be helping and that’s a relief as well.

Maria came with me today and will next Thursday for the Cystoscopy to remove the stent. She’s been a real trooper and a big support for me.

Thankfully, things are slowing down and she is working again most days. I think it’s good for her to take her mind off me!

It’s really hard for her to see me in pain and having things pulled out of me and stuck into me, etc.

There’s a great song by Rob Thomas of Matchbox Twenty (and solo work) called “Her Diamonds.” His wife has battled painful health circumstances for some time and it’s hard for him to see her in pain. I think this song applies to Maria dealing with me suffering through this ordeal.

“Her Diamonds”

Oh what the hell she said
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doing
Like I don’t know nowBy the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then i do too
So I let her beAnd she says oh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now
She’s down in it
She tried her best but now she can’t win it
Hard to see them on the ground
Her diamonds falling downShe sits down and stares into the distance
And it takes all night
And i know i could break her concentration
But it don’t feel rightBy the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what I’m supposed to do
So I sit down and I cry too
And don’t let her seeAnd she says oh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now
She’s down in it
She tried her best but now she can’t win it
Hard to see them on the ground
Her diamonds falling downShe shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be alright
She’ll be alright
Just not tonightAnd she says oh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now
She’s down in it
She tried her best but now she can’t win it
Hard to see them on the ground
Her diamonds falling down

7-9-12/Stable?

I was at Yale this morning and things appear to be stable at the moment. Creatinine was 2.1 – statistically the same as last time – and the same it’s been for over a week. Not a great creatinine reading, but it’s stable.

They did an ultrasound and that showed no fluid in the kidney – a plus – although we won’t know for sure the operation was a success until the stent comes out next Thursday.

I met with one of the two surgeons who operated on me for the ureter revision and he said the trauma can cause an elevated creatinine.

My incision is getting painful and looking red. It appears to be at the pre-infection stage, but close to infection. They put me on antibiotics to try to control that and avoid a wound impaction – when they open you up and remove yucky tissue. Not a fun day.

After my post at 3AM the other day – I slept 22 of the next 24 hours. I am so mentally and physically worn out. It’s very frustrating.

People are reaching out to me and helping to give me strength. Some people from work are checking in, Maria’s best friend wrote me a really nice and thoughtful email, and I had a great talk the other night with my cousins Sam and Tracy. They were amazing – they listened and validated my feelings instead of trying to fix it like many people seem to want to do.

People keep asking me what they can do. The answer is two fold. First, ask me what I need/want. Second, unless I specifically ask for something to “fix” the problem (i.e. a glass of water because I am thirsty, etc), just empathize with and validate my feelings.

7-5-12/Some Explanations

I was at Yale today and they have an explanation for my lack of bladder control – something I didn’t mention earlier. It’s not horrible, but it is definitely annoying. They think the stent that was put in to help the ureter and bladder heal has shifted. This shift puts pressure on the bladder and makes me “drip.” I am wearing “Depends” as that keeps my clothes/bed/furniture, etc. dry. The only way to fix the problem is to have the stent removed. It needs to stay in for 3-6 weeks – generally 4-6. They will compromise and take it out at 3 weeks so I can stop pissing myself.

They did offer a cystoscopy now to try to fix it and then another one to remove it. Since the odds are that a cystoscopy would not fix it, I opted to only have a 3 foot tube stuck up my penis one more time (for now anyway) instead of two.

The creatnine is still high – actually higher – at 2.2.

This has me more concerned. However, the doctor’s pointed out that post-op it can take a little while for things to settle down.

I am back on Monday for bloodwork and possibly an ultrasound. A biopsy is a remote possibility.

So, it’s back to the waiting game – the hardest part.

7-3-12/You (likely) Don’t Know How Hard This Is

I posted the below entry on my “Post-Transplant Feelings” page. However, thought it was an appropriate entry for today. 

I am very unhappy with how I feel and how others are handling me at the moment. Someone told me today that I least that “didn’t take my sense of humor.” I responded with “not yet.”

Readers’ beware. I am not in a good place. I thought writing this would be cathartic enough, but I feel I would be remiss if I didn’t publish it. I might decide to take it down later, I don’t know.

First, most people, thankfully, have no idea what either I, nor my family, is going through. I hope you never do. The ones who can are likely in later stages of life or facing a more imminent and dramatic ending sooner than later. In some ways, I envy these people the most – they know it will end and how.

People I talk to try to justify it. “You can handle the pain.” “We’re here for you.” You’ll get through this.” “Focus in being healthy in the end.” Name the cliché, and I have probably heard it. It doesn’t even bother me that they are cliché – it matters that people say it. I would much rather someone calls with something than not call at all. More on that in a second. On the first point, these words do help on some level, but rarely seem to take account of the entirety of the situation.

That is the problem you see – the entirety of the situation.

I am not just bitching about being in horrible pain here – for those that think I should be a tough guy. There is more to the story than that. Guys who tell me things like that often brag about never, or rarely missing a day of work  – do they even know what it’s like NOT TO BE ABLE TO WORK? How debilitating, frustrating, financially difficult, etc. that is?

Here are the problems in no particular order:

  1. Pain
  2. General Uselessness
  3. Specific Uselessness (work, personal, etc.).
  4. The Unknown/Lack of a Mental Break

First, the pain, in my mind, is mostly manageable. Yes. However, it is not pleasant at all. It often involves being poked and prodded in humiliating ways (often by people who have never known that pain) or is so dramatic that I can’t think about anything else. If it’s not one of those, it’s merely constant, but tolerable. However, that kind of pain is the worst, it just drags on and on and is physically and mentally draining on levels I cannot fully communicate.

Secondly, general uselessness. I fight with older people about helping them out of a chair, a car, etc. I NEED THAT HELP NOW. I know it’s embarrassing, but it’s better than sitting in a car for ten minutes until you can muster the strength to get out. Anything I try to do involves pain and I can’t help cook, clean, carry anything, etc. All I do is take up space.

Specific Uselessness. This is the worst. Not being able to do general things you should be able and used to be able to do. I can’t work because I can’t sit at a computer long enough or be out of pain long enough, or a combination of, to get anything done. I am also severely depressed and not in my usual gung ho mood. This is problematic. First, I feel useless. Secondly, I am essentially useless to the company that is standing behind me and being supportive. Third, I work mostly on commission, being in the finance industry.

I am going on 6 months of being in too much pain/discomfort, or literally unable to work, and therefore not nurturing relationships and not getting paid on work production. Yes, I have a job, I have residuals, and most importantly, I have benefits and the ability to work when I am able. I did get more done in the past 6 months than I thought I would. However, little affected income, more was tying loose ends, doing my basic work, and keeping things together. In other words a kidney transplant alone buts a financial strain on someone in my position, as does kidney disease for years – the second surgery did not help this.

On a personal level, the surgeries and mental anguish create more problems. It is very hard to be a good husband right now. Even though Maria tries to be there for me, I make it very difficult. On top of that, it hurts to try to hug/cuddle, let alone make love. So there is a lot of negative and little positive contact to offset.

Finally, the unknown. At this point, I have no idea how this will turn out. Each problem that comes up involves more questions than answers and they KEEP COMING UP. Since before the first surgery, there were questions, many of which are still not answered. That weighs on a person. Heavily. They said the first 3 months would be hard – almost done with that by the way, but even “they” are surprised at how hard this has been.

All this put together make a situation that is difficult to comprehend and even harder to overcome.

Now that I have said that, I am going to rant. This is focused on those who have been anything but they’re for my family and me in these hard times. Something I do not believe I would have done to them.

By now you have read the above – this is difficult, difficult, stuff to be dealing with. This is when someone needs the relationships he has developed. This is one reason people develop relationships in the first place.

I know some of you were there for the first surgery, and I appreciate that. However, despite your belief that I am an old hand at this – PRACTICE REALLY DOESN’T HELP IN THIS SITUATION.

To the ones who didn’t bother at all for either – WTF?

I guess it just wasn’t convenient for you, or it was hard to make time, or it was hard to decide what you should do. Guess what? THIS IS NOT CONVENIENT FOR ME. For those that think all the above, or spend more time coming up with lame excuses, I don’t want to hear them anymore. In my experience people spend more time and energy coming up with excuses for not doing something that is right than they would if they had just done it in the first place.

On a positive note, and not losing perspective here, overwhelmingly people have been supportive, understanding, and there for me. Many in ways I felt exceeded what needed to be done. That is the majority.

However be warned, if you think everyone else is going help and pick up the slack – you will likely be sorely disappointed. It can dangerous in these situations to count on anyone unconditionally – there needs to be back up for back ups or you need to be prepared to do it on your own.

Frankly, I am shocked, horrified, and saddened by how much of this I ultimately had to do on my own. I figured there would be more support. In some ways there was, in other ways, I was let down, and in some ways, the belief was unrealistic.

7-2-12/Enough Already

Okay, they said there would be bumps in the roads. I get that. I am, however,  getting sick of potholes that prevent me from reaching my destination – some consistent level of health. Not even great health – just consistent health. My standards are lowering by the day.

I was back at Yale today and although the incision looks like it is healing well – the creatnine is up again. It had been about 1.6-1.7 and consistently the latter after they stopped IV fluids. I am now 2.1. In two days? Really?

I get re-checked Thursday and they do not want to review scenarios with me until they confirm the creatnine level or see an improvement.

I have some theories but there’s no point in speculating at this point. I am however, very concerned. I am also in pain and running out of both energy and hope – quickly.

I had originally started this blog as a way for people to know what the process of kidney transplantation is like. It then transformed into a combination of that and being cathartic for me. Now I think it’s more the latter. Yes, I think parts of this are very representative of what the process of like – but it’s too much. Most people I have met from this experience have smoother roads and more success in a shorter span of time. The chance of needing the ureter revision was less than 1% for kidney transplant recipients – meaning the average american doesn’t even know what a ureter is. Let alone the revision of one.

I will keep writing if people find this helpful. I am starting to see searches on search engines that end up on my sight that have people asking about the process and specific procedures – like a cystoscopy. I continue to hope this is helpful for all.

Thanks for reading.

David

6-30-2012/Home

I came home from the hospital this afternoon and proceeded to sleep the day away. Hospitals are not the best places to rest as they are always talking to/sticking/poking/pulling, etc on you. You might sleep 10 hours, but never in a row.

I am still in a lot of pain, but the tramidol is taking the edge off and letting me sleep.

I will post more soon, but wanted everyone to know I made it home.

6-29-12/Crappy Day

Well, Friday was pretty crappy. They took out the catheter and the drainage tube. Although both are a relief, neither are pleasant experiencs. Frankly, the drainage tube is much worse. I almsot kicked the doctor who took it out. It’s not really painful as much as REALLY uncomfortable. It feels like your body is being sucked into your stomach for a few seconds.

Secondly, this surgey was more painful than the last. A combination of where they cut me. how much they cut me, and that they had to go through some scar tissue. Because of the higher level of pain – I needed more pain killers. More painkillers equated to really bad constipation. Constipation – for four days – is painful. Painkillers make it worse but the pain is so intese withou. What are you supposed to do?

Laxatives, a subosit0ry, and some hot tea later, I got some out. What I relief. I was able to take a non-narcotic painkiller to take the edge off so I could go. The pain was right where the incision/surgey pain was – so it was really horrible.

Everyone got a kick out of my shirt I bought in anticipation of the occasion. It said, “I Pooped Today.” They do ask.

Meanwhile, I was pretty irratable – my 4th day in a row of intese pain and 1st with no painkillers in my system for some time. Maria and I got on each others nerves and  I am pretty sure I didn’t make any new friends.

The important thing is we got through it. I should go home Saturday or Sunday. I’ll keep you all posted.

crappy. They took out the catheter and the drainage tube. Although both are a relief, neither are pleasant experiencs. Frankly, the drainage tube is much worse. I almsot kicked the doctor who took it out. It’s not really painful as much as REALLY uncomfortable. It feels like your body is being sucked into your stomach for a few seconds.

Secondly, this surgey was more painful than the last. A combination of where they cut me. how much they cut me, and that they had to go through some scar tissue. Because of the higher level of pain – I needed more pain killers. More painkillers equated to really bad constipation. Constipation – for four days – is painful. Painkillers make it worse but the pain is so intese withou. What are you supposed to do?

Laxatives, a subosit0ry, and some hot tea later, I got some out. What I relief. I was able to take a non-narcotic painkiller to take the edge off so I could go. The pain was right where the incision/surgey pain was – so it was really horrible.

Everyone got a kick out of my shirt I bought in anticipation of the occasion. It said, “I Pooped Today.” They do ask.

Meanwhile, I was pretty irratable – my 4th day in a row of intese pain and 1st with no painkillers in my system for some time. Maria and I got on each others nerves and  I am pretty sure I didn’t make any new friends.

The important thing is we got through it. I should go home Saturday or Sunday. I’ll keep you all posted.

6-27-12/Surgery A Success But Pain Bad

According to both surgeons, the surgery went very well. Things had to be moved around a little, but basically, was in range with what they expect. They were pleased.

I am relieved. Part of the concern going in was whether the ureter revision would work. We won’t know if we are totally out of the woods until the stent comes out via cyscoscopy – again – in 6 weeks. However, things look good and the worst case is pretty much just  kink in the new ureter that can be corrected via nephrostomy tube. This happens rarely.

Having said all that – the pain is pretty bad. With the transplant, I could favor my left side becasue the new kidney was on the right.

Now I have a large incision right down the midele of my torso/abdomin. Nothing to favor – just constant pain. I walked a little today, but it got very painful quickly. Getting back in bed was awful. Additionally, I have a directional catheter. In other words, it doen’t drain constantly, so the tube has to be moved around to facilitate drainage at times. That in and of itself is enough discomfort to make anyone crazy.

The good news is there is only a small drainage tube this timeand it should come out before I go home. As will the catheter.

I am stuggling with perspective again – too far in the forest of pain to see the trees.

I hope things begin to transition to more appreciation and a more postive attitude about getting on with my life – soon!

6-25-12/Surgery Tomorrow

I don’t really know what to say. I spent most of today staring out into space and trying to rationalize this – or at least, make peace with it.

No such luck.

I will try to keep everyone up to date, but don’t expect anything for a few days, at least.

Thank you to those who have reached out in the past few days. It is much appreciated.

6-23-12/I Can’t Do This Again

I am really struggling. I don’t know if I can muster the strength to go through this AGAIN!

I know I don’t have a choice – and everyone keeps reminding me that – as if it helps. However, in many ways, I feel worse than going into the last surgery. Physically better overall, but still having pain from surgery/tubes, etc and mentally, not so good.

It’s not that I feel sorry for myself, I really don’t, it’s more a factor of being mentally worn out and being sick of being sick and helpless. I can’t function much at work, at home, or even enjoy things right now. I think much of getting through surgery is your mental attitude. Right now, mine sucks. That scares me and I am not sure how to correct it.

Furthermore, where is everyone? There was so much support going into the last surgery, and now, much less. Not as many people are offering to help out after, and much fewer are reaching out to Maria. Many also seem to think since I had the transplant, I am somehow prepared for this surgery. Therefore I need less support.

I am not complaining so much as I am confused. I am also not trying to diminish the effort many people are putting in. It just seems different. Again, I feel like I am going through this alone, and that doesn’t help the mental aspect of this.

At the moment I am overwhelmed with feelings of doubt that I can get through this – again.

It would be really nice to get on with me life at this point, and instead, I am starting from basically scratch again.

6-21-12/Overwhelmed – Don’t underestimate the mental drain

Yale wanted both top transplant surgeons to perform the ureter relocation surgery. That would be both the surgeon who operated on me originally, as well as the surgeon who operated on my mother.

They thought they could both be together this Thursday, but were unable to make it happen. Therefore, the surgery is now Tuesday 6-26-12.

As much angst as this adds, I am glad both surgeons will be involved.

I am struggling now, but will do my best to be optimistic. Thank you all for your support.

6-19-12/Surgery Moved

Yale wanted both top transplant surgeons to perform the ureter relocation surgery. That would be both the surgeon who operated on me originally, as well as the surgeon who operated on my mother.

They thought they could both be together this Thursday, but were unable to make it happen. Therefore, the surgery is now Tuesday 6-26-12.

As much angst as this adds, I am glad both surgeons will be involved.

I am struggling now, but will do my best to be optimistic. Thank you all for your support.

6-18-12/Depression

I have tried to stay positive and when possible, laugh about the situation. This weekend, I hit a wall. I am deeply depressed.

Do I know it could be worse? Yes. Do I know others have it worse? Yes. Does that matter right now? Not really.

I can barely get out of bed right now. I am so mentally and physically exhausted from the (literal) pain of the past 2 months and the mental ups and downs have been difficult, to say the least. Now I am looking at going through all of it again.

Someone pointed out today that I was able to get up the energy and courage to face the first surgery.

I have given that some thought and am concerned. First, I took what little energy I had left and put it towards preparing and dealing with surgery and after. Secondly, I was ready. I had been so sick for so long, it was time.

The problem now is I haven’t recovered mentally or physically from the first surgery yet. Additionally, I am not going to feel better after this surgery. I am going to feel the same, but with fewer tubes sticking out of me and hopefully a now successful transplant. The motivation here is that I can finally get on with my life. As good as that sounds, it’s hard to imagine that right now.

Another issue is that I know what to expect – pain, embarrassment, catheters and cyscoscopy’s, drainage tubes, and a long, long, long, recovery. I thought that would give me some comfort, and it probably does on one level. I am not scared. I am just very upset, angry, and unhappy.

The odds of needing this surgery are so small, how I can be optimistic that this surgery works now? I know statistically, it’s unrelated, and the odds of falling into the 1st percentile twice are slim. However, emotionally, I am prepared for the worst. That’s exhausting in and of itself.

I apologize to those who have been pulling for me and hoping that I stay positive. However, I feel that it’s important to document the whole spectrum of feelings that surround this process. I think what I am feeling now comes with the territory.

6-15-12/Surgery Next Week

When I want into transplant April 12th, I wore a shirt that said, “Honey Badger Don’t Care.” Well, now the Honey Badger does care! I am having surgery next Thursday, June 21.

The surgeon asked what I was doing next thursday, and I told him that suddenly, my schedule had cleared up.

The percentage of people who have complications that lead to this surgery is around 1% of transplant recipients. To be sure this goes well, both my surgeon from the transplant, as well as the surgeon who operated on my mother, will be performing this surgery. If they do 120 transplants a year, which is about what Yale does, they have to perform this surgery 1-2 times.

In addition to the rarity of the surgery, they can find complications during the surgery frequently. The old ureter could be fragile as well, it could have trouble reaching the new kidney, etc. In the latter case, they actually move the bladder closer to the new kidney. So, they have contingency plans for 3 scenarios. If it’s a fourth or fifth scenario – they close up me up and go to plan Z. Of course, the likelihood of a fourth or fifth scenario is less than 1%. Sound familiar?

The surgery will involve a second incision, at least as big as the first – there goes my modeling career! This incision will be centered on my stomach which means it could a) heal a little faster, and b) potentially cause less movement infringement. Less pain is NOT likely. They also have to cut through different tissue as well as scar tissue around the new kidney. This involves causing the bowels to shut down for a few days from trauma. This means no food for 2-4 days post surgery.

I can deal with the pain (although not pleased about it), but the whole thing is overwhelming right now. Another long recovery with continuous pain. Another cyscoscopy at the end. Another headache for my family. Another interruption in a life that was 70% back to normal.

I don’t mean to be bitter. I am glad they can do the surgery and am optimistic it works. Of course, I felt that way going into the transplant surgery as well.

I am really happy that long-term I should be okay, and relieved they caught this early enough that I am not at added risk of losing the new kidney. Don’t get me wrong, my feelings are overwhelmingly positive.

People keep reminding me it could be worse. I agree, and I know that. However, knowing that and that long-term I should have a fairly normal life AND feeling bummed/scared/angry are NOT mutually exclusive.

As far as I am concerned I am entitled to have both feelings.

I’ll try to write again before the surgery, but am really overwhelmed, so no promises.

6-13-12/Looks Like a Second Surgery :(

I had my nephrostomy tube pulled back today and ureter still looks pretty bad.

I am meeting with the surgeon on Friday to almost definitely schedule my second major surgery in roughly two months. I am less than happy.

I don’t know what to say now except I am angry, scared, and upset at the thought of being in pain for another 8+ weeks, postponing my life for another 8+ weeks, and having tubes and stents, etc. put in and pulled out of me again.

I will write more when I know more on Friday.

In the meantime I am trying  to focus on the fact that the kidney was saved from an inevitable death had this not been dealt with as swiftly and effectively as it was.

That is very positive and a relief. However, at the moment, that has little impact on how bummed I am about needing surgery again.

6-8-12/Exhaustion

The emotional and physical stress is taking its toll.

Emotionally, I have the likelihood of another surgery hanging over my head. That alone is overwhelming. On top of that, I still have the drain in me.

This wednesday they pull the nephrostomy tube and stent back a little and look at the ureter. If it’s fine, which is not likely, I am done with procedures – at least for now and can party like its 1999. Otherwise, they schedule the surgery to replace the ureter for soon after.

In the meantime, my creatnine is down to 1.7 and holding. So the kidney is doing what it’s supposed to and apparently was nothing more than annoyed by the urine buildup. In other words, we caught the ureter issue in time.

When I am not exhausted (not often at the moment), I get glimpses of what it will feel like to be through all this. It’s a good feeling and one of the only things keeping me going right now.

My wife is showing signs of stress too. This whole thing is weighing on both of us. The good news is that we are doing a good job of staying strong as a couple, even if we are not feeling great individually.

We have decided to renew our wedding vows this September, on our 5th wedding anniversary. Life is too short and we have been through lot.

5-31-12/From Bad to Worse

It is never a good thing when you show up at transplant clinic and they tell you the head of surgery is coming to speak with you.

Long story short, the entire team reviewed my case and they are fairly certain that I will need surgery in a few weeks to attach one of my old ureters to my new kidney.

CRAP!

The surgeon explained that he thought it would be a “miracle” if the stent and drain fixed the problem. He also said they are not willing to do another stent/drain because I am already having pain and the next thing after that is infection. Infections from the drain can quickly spread to the kidney, if they don’t originate there, and cause major problems. They would rather do surgery to almost guarantee a fix than risk hurting the kidney. Frankly, I agree with them.

I said to the surgeon, “I guess if you have to have a problem post-transplant, this is better than something that directly puts the kidney at risk.” He responded with, “if you say so.”

Apparently, less than 1% of transplant recipients have it come to this.

The rest of the conversation did not go well. Here’s basically how it went:

Me: Okay, well at least I don’t need to spend a week in the hospital afterwards.

Surgeon: Yes you do.

Me: Okay, well at least the recovery will be easier than the transplant surgery.

Surgeon: No, it will be the same, or worse since we have to cut through healing/damaged tissue.

Me: Okay, well at least I don’t need a cycsoscopy to remove a stent.

Surgeon: Yes you do.

I am not a happy camper right now.

To top it off, my uncle is being honored for his role running a non-profit for the past 20 years, about 2 hours from my house. My Grandfather is flying up and we were going to go together. That looks unlikely at best right now. I will either be having surgery, or still have a “pain drain,” as I like to call it, sticking out of me – with urine leaking out of the site.

I talked to my grandfather last week about the possibility of not being able to take him to the event. Today he explained that while he is visiting here in Connecticut, he wants me to take him to Massachusets to visit a cousin. I told him I didn’t think that was going to happen. Something like, “we’ll see” followed. To which I said, “it’s really not something I can do.” To which something like, “tough it out” followed.

I don’t know if he’s in denial, or just has no idea how much pain/discomfort I am in. Or, the risk and added discomfort driving 5 hours in a day will cause. Or, if he cares about me, but is incapable of caring about my circumstance. Either way, it’s frustrating, to say the least.

5-30-12/More Pain

I have been neglecting the blog of late. Not much new to report so I haven’t felt obligated. Also, I have been dealing with a lot of both kidney, and non-kidney, related items. However, I should probably be writing more regularly.

Last week I was at Yale and they took some blood and did an ultrasound. The ultrasound showed the stent and drain are doing what they are supposed to do and the kidney is not retaining urine. My creatnine was down to 1.9.

On a sorer note, literally, the drain is causing me intense pain at times. It feels like someone is pooring acid on my side and in my ribcage. Sometimes it’s triggered by movement, other times it just hurts. The whole area is sore now as well.

Over the past few days the pain has gotten a little better, but the drain site leaks when I urinate. Of course, virtually every time I pee now, I get intense pain in my side at the drain site.

I spoke to Yale twice about it since my last appointment. At that appointment they said all looked good and they weren’t too concerned. The pain got worse over the weekend and the leakage began as well. So I called Yale.

The summary of the talks with them is that they are not concerned, this is not unheard of (although most people, thankfully, do not have nearly as much pain, if any), and if I can’t handle the pain, they can give me painkillers.

I basically said it’s not a pain issue – I would rather be on the ball and in pain 1/30 minutes, then drugged constantly. It just seemed like it could be indicative of a bigger problem. If it’s not, and we will verify that Thursday in clinic, then it’s just “tough” for a while.

5-21-12/When Is a Damaged Ureter a Good Thing?

I was at Yale today and have potentially  good news.

First, they took off my urine bag and I can pee like a human being again – via genitals instead of tube in kidney!

Secondly, there may be reason for optimism.

My surgeon came down to clinic to speak with me today. He said he spoke with the Interventional Radiologist who performed the procedure on Friday, and read his report.

The bad news is both my surgeon and the radiologist are pretty confident there is no kink in my ureter. They are both pretty sure the ureter was damaged during transplant and is “narrow throughout” as opposed to in a section.

However, they are more optimistic than the evidence originally indicated.

In most cases the ureter is damaged and does not repair itself, it has been damaged beyond repair. The radiologist, from what he could see and feel, thinks there is a good possibility that I fall into the small percentage of people who have this problem (already a small percentage of people) where the ureter is damaged and cannot repair itself, but can repair itself with a little help.

My surgeon explained he believes now there is a 50% chance I need surgery, not a 70-80% chance. Much better odds. He explained that the radiologist was optimistic, but not necessarily confident, that the stent he put in would allow the ureter to heal larger than it had after transplant.

When they go back to take out the stent in several weeks, they will take images. These will show 3 possible scenarios:

1. The ureter has not improved/is still narrow – and then they will schedule surgery.

2. The ureter has grown, but is still not big enough. At this point, during the procedure, they put in a larger stent (which they cannot do initially) with increased confidence that over 3-4 weeks, that will make the ureter normal again. In this scenario I have to back for one more procedure, but a) that beats surgery and b) they go through holes/paths they have already made so the procedure is shorter, less dangerous, and therefore a little less painful.

3. The ureter is now normal size. If this is the case, I go on with my life.

In scenarios #2 and #3 – I will have to monitored for some time as there is still a risk (all be it a small one) that the ureter shrinks again.

Finally, I learned two other things. Most importantly, they definitely intervened before any damage was done to the kidney and this should not affect the long-term viability of the transplant. Secondly, if they do have to perform a second surgery, from the surgeons perspective it is not very risky or difficult. However, the reason it is crappy for me is that they have to cut through scar tissue around the new kidney to connect the ureter. The reason they don’t just attach your own ureter is the first place is that only “3-7%” of people have any problem with the ureter and that adds complexity to the surgery.

So, for now I am keeping my head high and my thoughts on other things. In the meantime, my creatnine is back to 2.0 – but my surgeon is not surprised. He thinks that will be my baseline (1.8-2.0). I am bigger than my mother, she, obviously is a woman and I am a man, and she is 2X my age. All these things can contribute to a higher baseline. However, even if it’s stable at 2.0 – it’s not a big deal. That’s a little high for a transplanted kidney, but  not alarmingly so or something I would ever notice. As long as the trend isn’t getting worse, they will be happy.

5-19-12/Good News, Bad news, and Bad news

Yesterday I had my percutaneous nephrostomy tube placed, with a drain, as well a stent put in my ureter.

The procedure was not terrible – it was kind of like a kidney biopsy – which was really not fun – except they really drugged me nicely for this procedure. So, moments of pain were followed with a state of almost bliss.

The other good news is post-procedure my creatnine has come down – already – to 1.8 and is likely still dropping. Additionally, they are confident that by intervening now, no damage was done to the kidney and long-term both I, and the new kidney, should be fine.

Okay, that was the good news. The bad news and bad news is as follows.

The new ureter – that came with my mother’s kidney – is either kinked, or damaged beyond repair. If it’s the first, which they think is the unlikely scenario, then in 3-4 weeks, when they drug me again, take out the drain, and take out the stent, everything should be fine. They will know almost immediately whether this worked.

The images that IR (interventional radiology – who performed the procedure) took didn’t seem to show evidence of a kink, but definitely showed narrowing of the ureter. My surgeon said that one picture might have showed a small kink, but he doesn’t think so – and it’s clearly not conclusive.

So, regardless, I have to go through another, similar procedure to yesterday in 3-4 weeks, to remove the stent and nephrostomy tube. I can live with that, although I’d hardly say I was looking forward to it.

The problem is if the ureter is damaged. This can happen during/post transplant and there is no way to predict it. A kink can be caused by the surgeon – although they take steps to avoid this – or by the stent being removed via cyscoscopy – those fun 40 seconds I had last week with a 3 foot tube and camera stuck up my penis. Anyway, the ureter can be reliant on a full blood supply from its host. When the kidney is removed and placed in my body it doesn’t get blood for a short period of time. It can become damaged then. It’s rare, but does happen. Additionally, my body may not provide enough blood to the ureter to make it happy or to repair any damage done during transplant. This is what they think happened.

If this is the case, the procedure in 3-4 weeks will not fix the problem and they will need to do MAJOR SURGERY AGAIN.

They will have to cut me open, again, and surgically attach one of my old ureters to the new kidney.

That means another surgery, another hospital stay, and another month or so of recovery. I am praying that’s not the case, but the doctors wanted me to know they are leaning towards that happening, and wanted me to be prepared and not shocked should that be the case.

I am still processing all this and will write more soon.

I do want to reiterate however, that the kidney should be fine and we intervened at the right time. This is by far the most important thing. What I am dealing with here is not life or death, but really just a major nuisance.

Either way, I am bummed.

5-17-12/Bump In the Road

Well, the good news is my Creatnine is still stable at 2.0 and the Prograf level is still relatively high, so there is room for improvement.

The bad news is that the tube connecting my bladder to the new kidney is not doing well without the stent. It’s closing up and therefore urine is building in the new kidney. At the moment, that’s not creating a problem functioning wise, but it will if we don’t take care of it ASAP.

So, tomorrow morning I get checked into Yale and have another tube inserted into me to drain the kidney and they will also try to open up the connection some. I will be knocked out for this and will have to stay in the hospital overnight tomorrow night.

Apparently this happens to 5-10% of kidney transplant recipients when the stent is removed.

Apparently, if this doesn’t go well (if it’s not successful) – then they have to do an even more invasive procedure. It doesn’t sound like the kidney is at risk right now, but things may not be fun for a while.

I’ll update on the procedure as soon as I can.

CORRECTION as of this evening: I recently learned that I will not be knocked out for the procedure. In fact, I will likely be very aware of what they are doing. They said they will give me some morphine – and I look forward to that. The worst part for me is the anxiety around what they are doing. Hopefully the morphine let’s my mind wander a little.

5-15-12/Creatnine Stabilizing?

I was at Yale yesterday. My creatinine is down to 2.0, from 2.1 on Thursday. Better, but still not great. In the meantime, my Prograf levels are still high – so they lowered my Prograf dosage (again) as that can explain the elevated creatinine. Since things had improved, even slightly, they did not do a biopsy.

I think this is one of the hardest parts of the whole process; the ups and downs. It’s not so simple. It’s not like you get the transplant and things are back to normal. There is a whole new “normal” that you have to learn.

A few positives however – and some challenges that come with them.

First, last night was the first time since the surgery I slept in my own bed, with my own wife, and my own dogs! It was awesome. I have been sleeping the guest room because of risks with healing/open wounds and dogs. We didn’t have the heart to kick the dogs out the bedroom – they have been sleeping on the bed with us since they were puppies. Besides, they have been freaked out enough with me hobbling around and having tubes sticking out of me etc. I am hobbling less – really moving quite well actually – and everyone was thrilled to have me back in the bedroom again.

Secondly, I have been cleared to eat out! We went out to lunch after leaving Yale. That was pretty cool too. Was getting sick of frozen food. They also said I can have fresh vegetables if I soak them in 1/2 water and 1/2 vinegar first (assuming I can’t scrub them). Some fruits are difficult to scrub – lettuce, broccoli, etc. So, tomorrow, I am going to have salad! This makes it much easier to get back on my diet. I have gained back 5 pounds since surgery. I have been sitting around and the steroids made me hungry. In 4-6 weeks I can start exercising again – that will help. They also lowered the steroids to my long-term dose. Today was the first day on the new dose, and I felt much less hungry.

Finally, I have started doing some work. I am not officially back, even part-time, until June, but I am bored out of my mind and feeling somewhat useless. It’s good to have something meaningful to do, but I am taking it slow.

Maria freaked out because today I worked 3 hours or so. That’s the most time I’ve spent in a day since the surgery at my desk period, certainly the most working. She’s afraid I am going to push too hard.

Frankly, the problem I am having is not doing too much because I feel good (i.e. lifting heavy objects, etc.). The pain is 90% gone and that’s when they said I am most at risk. I can still do damage, but feel good. I am trying really hard to listen to my body. I took a nap today and only worked 1/2 hour at a time or so. I am trying to go slow, but want to do much. So it’s a balancing act, but a better one to have then sleeping 18 hours a day and trying to cram everything into 6 sick-filled hours.

5-11-12/No more Stent! Creatnine still jumping around.

Well, the worst is over. The stent came out on Wednesday.

They encouraged me to take painkillers before the stent removal/cystoscopy. I didn’t because a) they said it would only take 30-40 seconds and b) I wanted to be able to write about accurately in the blog.

In retrospect, I should have taken painkillers. However, the procedure was not as bad as I had anticipated (still bad however) and took no longer than 40 seconds.

Basically, they put lidocaine in your urethra, which is uncomfortable and feels like you are peeing backwards with a urinary tract infection. Not painful, but not fun either.

Then they stick a scope/camera up into you. I thought the beginning would really hurt, but it’s just uncomfortable. The doctor told me when it would really hurt – which is when the probe goes into the bladder. He was right, it felt like someone was standing on my bladder. It was rather uncomfortable and painful, but only lasted about 3 seconds.

Once it’s in the bladder, it’s like having a catheter in. You know it’s there, but not painful at all. They pulled the stent, and the scope, out in about 3 seconds. Not fun, but not really painful either.

I think the anxiety surrounding the procedure is much worse than the actual procedure. It was really quick, and frankly, I have been through worse in this process.

Yesterday my creatnine was 2.1, but my Prograf levels are elevated. That should explain it and they lowered the Prograf. If things are stable or better on Monday, no harm no foul. If the creatnine is higher however, they will want to do a biopsy. Not likely, so I am not even going to worry about it.

In the meantime, I feel pretty good.

I’ll keep everyone up to speed.

5-3-12/Things are Progressing Nicely

Was at Yale again today. Creatnine is down to 1.7 indicating that the Prograf caused the rise, not kidney problems.

They say I am doing so well, that I can go to once a week visits instead of 2X weekly. Next Wednesday I am having the stent at my bladder taken out with a urethra probe – ugh.

Everyone says its worse in theory than in actuality and it takes less than 40 seconds. I will do what I have to do.

Maria is going back to work tomorrow and is planning on working at least 3 days next week. So, things are getting back to normal.

Looking back I feel really blessed. Everything has gone incredibly well and aside from a few scares (i.e. creatnine creeping up), has been pretty uneventful.

I had lost 40 pounds leading up to transplant (over a year or so) – from 230 to 190. I am 5’5″ and my goal weight is 165.

Yale has encouraged me to take it slower now with the weightless. I can lose 1/2 a pound a week instead of 1+. That makes my life easier, especially when I can work out again doing cardio and weight training. I just have to careful about what I eat and not go crazy counting every calorie.

Two other good things. One, my neurologist feels the stress of surgery and the high doses of immune suppressants are making the migraines more frequent and worse. He gave me more medicine and said to take the full dose early in the migraine. I had historically taken 1/2 a dose. Long-term, things should return to normal.

I also started driving again. Taking it very easy, but with Maria going back to work, it’s nice to know I am not stuck at home!

5-1-12-Staples Out and Creatnine Stable

Things are progressing well. I got the staples out yesterday and my creatnine is stable at 1.8. The protein in my urine is normal, which seems to indicate that at the moment, the FSGS is leaving the new kidney alone.

The staples coming out was not a big deal at all. I barely felt it. The whole area is still numb from the surgery, which is normal, and the process is pretty quick.

I am very pleased with how well everything is progressing. They have started to reduce some of medicine now that I am at the levels they want. The Prograf has been reduced somewhat and the steroids as well. We think the Prograf is making my migraines more frequent and worse. So I am happy to go down on that. Additionally, I am seeing my neurologist tomorrow.

The only thing left is the stent coming out. Not looking forward to that, but I will be tough.

4-26-12/3rd Visit to Yale/Good News

Today’s visit was a relief. My creatnine is actually down to 1.8 from 1.9. They would have been happy if it was the same, but it dropped. That is a great sign. It seems to point to the Prograf as the culprit for why it rose in the first place, but now the dose is stable and therefore so is the creatnine. Thank goodness.

They also mentioned something about the protein in my urine being good. The disease I have (FSGS) can attack the new kidney and often protein in the urine is a sign of that (as well as creatnine and other indicators).

So, knock on wood, things are going in the right direction.

I also had my drain taken out today. That means all that is left in me are the staples on the incision. Those come out in a week or so and the stent attaching the new kidney to the bladder comes out in two weeks.

The drain coming out was uncomfortable, but not painful. I feel much better now that it is out.

4-25-12/Migraine

Last night I had a terrible migraine. It didn’t respond to my migraine medicine for some time. That’s very unusual. Because it didn’t I was afraid it was a medication reaction and called Yale. I hate to call the 24 hour hotline and be a bother, but I was concerned that it didn’t respond to the migraine medicine and that it might be something more serious.

The doctor reassured me that when they say headaches from the medication, they mean headaches. I could barely talk I was in so much pain. I made an appointment with my neurologist for next week to follow up.

On a good note, there was a dramatic drop in pain at the incision site from yesterday to today. I would say it’s the  biggest single day drop I have had since the surgery. I am optimistic that when everything heals in a few months, I will feel like a new man.

Tomorrow I go back to Yale for bloodwork and to have my drain removed. Will write tomorrow.

4-23-12/Second Visit To Yale

I had my second visit to Yale today post transplant.

Things went okay. Everything seems to be healing nicely, however, there are a few concerns.

My creatnine is up to 1.9. Usually, 2.0 is the threshold where they start to worry, and they want it under 1.8. In the hospital it had been 1.5-1.6. They say you never get back to that low because one of the medicines they put you on to help your body accept the organ (anti-rejection medicine) can also raise the creatnine some. The hope is since they have continued raising the dose of that medicine, it is finally saturated in my system and they can either reduce the medicine and the creatnine will drop. Or, I will have a slightly higher baseline. The main concern is the trend upwards. They did an ultrasound today and that looked okay from a blood flow to the kidney perspective, which is good.

They said the first 3 months would be nerve-racking and that there would be ups and downs. They were not concerned enough to keep me at the hospital and sent me home. However, they are going to call later to advise and when I got back Thursday for more bloodwork and to visit, we will know more.

I will update after the call this afternoon.

UPDATE

I spoke to Yale this afternoon and the medication in question, Prograf, was indeed high. That should, operative word is should, explain the higher creatnine.

At the moment, they did not change my dose, but we will re-evaluate on Thursday.

In the meantime, I am relieved.

4-21-12/Surprisingly Still in Pain

I am really shocked that 9 days removed from surgery – my whole right abdomen is still very sore/painful. It helps to move around as that seems to stretch things out and keep them more loose. However, I still feel like I got hit by a train! It’s weird, because aside from that, I feel pretty good.

That’s surprising also. I thought I would be “high” on how good I would feel after surgery. However, I’m not. I feel normal. Normal is good. Normal doesn’t feel amazing, it feels, status quo. Don’t get me wrong. I am not complaining at all. I am relieved not to have fatigue, nausea, and headaches. I guess you just imagine normal must be comparatively amazing. My body is adjust very quickly to this new/old norm.

Another thing worth mentioning is that I have a weird taste in my mouth. It’s constant and kind of like a mildly sour dairy taste. Not terrible, but not super either. And it’s always there. I taste things normally, maybe even better than before transplant, but that taste is frustrating. The pharmacist said it was likely the steroids and that I’d have that forever. I am hoping it gets better when they cut the dose in half, which they plan to do.

I’ll talk to them about that on Monday when I go back to Yale.

4-20-12

My mother came over yesterday and she got to see me for the first time since the day after the surgery (when she went home).

She cried. She said I looked amazing. She was a little shocked when I showed her my massive incision site. Apparently, she has a small (maybe 2 inch) incision below her belly button. Hers is also horizontal – mine is vertical.  I was shocked at how non-invasisve this whole thing was for her (relatively). She was home in two days, is pain free now, etc. It makes me think that more people who want to donate should talk to those who have.

My mother is more overwhelmed with joy saving my life than she is upset (at all) about the whole surgery. It’s a beautiful thing.

Separately, I slept like a baby last night. I was able to get at least a little comfortable in bed for the first time since the surgery.

4-19-12/New Pages and First Post-Transplant Yale Visit

I have added new pages to the blog: Two open letters – one to YNHH and one to my mother. I have also added a page about post transplant feelings.
Please check them out.

The first post transplant visit went well today. My creatnine is 1.7, but that said that’s normal since they raised my Prograf – one of my anti-rejection meds.

The incision site seems to be healing well, and I am feeling more mobile by the day.

SO FAR SO GOOD!

4-17-12/HOME!

I am home. The dogs were great – they seem to understand I am not 100%, to say the least.

I met with the social worker this morning and discussed how I feel. I guess I am ambivalent. I feel so glad that I am through this and had this opportunity. However, I am  still in pain right now and sad I had to go through it at all. She said it’s very normal and it’s hard to have perspective 5 days out from surgery.

My creatnine has stabilized at 1.6! Way better than 5.1 and my potassium, etc. is normal.

I am going to get some rest, but will write more soon.

Thanks for all the support.

4-16-12/Going Home Tomorrow – Likely

Well, the catheter is out and that wasn’t terrible. It wasn’t great, and I wouldn’t sign up for a daily catheter, but I survived.

I then peed, so no more catheters for at least a few weeks when they need to take the stent out of my kidney. I’ll deal witht that another day.

Everyone has been really supportive and many have visted, called, etc. I also noticed that people have been reading my blog. I appreciate it.

The one thing that gets me is that I am always going to be sick and there is a foriegn object in me. I freaked out a little last night, but Maria pointed out how much better I am doing and that she is happy to have me healtheir and in her life. I guess I would do this again in a hearbeat, but I am a little freaked out about what can still happen – problems – and what they have to do either way.

I was told it’s okay to bitch a little about being poked and prodded and uncomfortable. I feel bad about it. I feel so blessed and don’t want to take advantage or have a bad attitude. However, this whole things does kind of suck. At 32, not my idea of a good time.

Overall, I am feeling much better. I am sore and tired, but not sick for the first time in a long time.

The doctor’s came in today and reiterated that I need to be careful – indefinately – in public, etc. No peak hour trains, no crazy hours at work, etc. I need to be careful forever, and that is still scary. However, a small price to pay.

However, the doctor said, “I am not a man in the bubble.”

4-14-12

I had a rough night last night. The medicine caused horrible indigestion and I couldn’t sleep, eat, or rest. I slept most of Saturday and the staff got on top of the reflux.

I went to the bathroom for the first time in 4 days today – the anestesia and painkillers can make you constipated. Being transplanted, you can basically throw out your pride. I have had more people examine my catherer, wound, and wipe my ass than I care to share. However, I don’t care. My mind is on the prize. I should go home soon.

I walkled around the hosptial floor twice today – the second time without my walker. Awesome.

Meanwhile, my creatnine is down from 5.0 to 2.0 as of this morning – and still dropping. My blood sugar is stable and healthy and my anger issues from the sterioids are non-existant. My potassium is its lowest in 3 years.

I am retaining some water, but about 6 pounds less since they took out the Iv’s.

More to follow.

4-13-12/The Day After

Kidney surgery was better, and worse, than I thought it would be. First, the bad news. Narcotics suck, as do incinsions and pain. However, everything went really well considering. The kidney started working immediately – there can up to a several day delay. My creatnine had dropped from 5 to about 3 by this morning, and I am already feeling better. Yes, I have surgery related pain, but I am also not feeling ill for the first time in a long time. My stomach is okay as is my head. Additionally, I had no ill effects from the steroids -no mood or blood sugar issues – so far.

My mother is doing fine, except that they had to re-catheterize her because she wasn’t producing urine. Apparently, that is pretty normal and not a concern, but I feel bad.

My mother said overall it was not as bad as she thought it would be and had no regrets. Especially since she sees how much better I feel even one day out. She’s a fantastic mother and I am lucky to have her.

4-12-12/I’m Alive

The surgery went well.  However, I am tired and don’t have the energy to write much.

I will write more tomorrow, but I wanted to thank everyone for their support.

4-11-12/Surgery Tomorrow/D-Day is Approaching!

Tomorrow is the big day. I have made my peace with what has to happen and am looking forward to feeling better on the other side (of transplant that is!).

I spent most of today running around so I didn’t have to think too much about tomorrow. Many people called/emailed/or texted and it was nice to feel that love.

I am pretty sure I have all major religions covered as well – everyone I know is praying for me.

I spent a lot of time with my wife, both consoling her and letting her console me. We are both scared, but are also both optimistic about the future; a potentially healthier future.

I took off my necklace today. It was my father’s and I’ve worn it since the day he died – 7 years ago. I feel naked without it, but know he will be with me tomorrow.

Going into this, my expectation is that everything is going to be fine. However, I find comfort in the fact that I have accomplished most, if not all, I wanted to in my 32 years.

I’ve shared my life with great friends and family, married the woman of my dreams, driven a race car, created something amazing to help the company that hired me out of school and gave me a shot, etc.

I’ve done so much in my time on earth, and most importantly, have touched many peoples’ lives. Those close to me seem more worried about losing me tomorrow than I am about dyeing. That’s not good or bad, just a reflection of the person I have tried hard to be. The important thing is that I really don’t have any regrets. I’ve made mistakes, but I’ve learned from them as well and done the best I could with what I had.

Please keep me in your thoughts/prayers and I will write as soon as I am able. I also plan to keep tabs at the hospital so I can share the experience as accurately as possible. Just be patient – posts will not come quickly I assume.

I love quoting song lyrics, so I will close with words of wisdom from The Smashing Pumpkins:

“My life has been extraordinary; blessed and cursed and won.”

4-10-12

The trauma of yesterday is subsiding and I am getting much support. I really want to be strong, for me and for my family, but I am still scared.

I have come to the preliminary conclusion that I will do whatever I have to in order to make this successful.

4-9-12/Pre Surgery Appointment at Yale

Today I spent the day at Yale New Haven Hospital. I met my surgeon and team.

Everyone has been so nonchalant about the surgery and been talking about how routine it is. After talking with my surgeon today, I am a little confused.

It sounds like I will be having MAJOR SURGERY!!!!!!!!!!!!!! Excuse me for being a little freaked out, but I wasn’t expecting talk of catheters, stents, and drainage tubes. Call me naive, but today things really hit me.

My biggest concern going in was being catheterized – I know – it’s not terrible, but that’s what I was fixated on. First of all, I don’t have to worry about that because they will knock me out first. However, the catheter stays in until I leave the hospital – ugh. And, in case that wasn’t fun enough, 2 months later – they stick a scope up me to remove the stent they put in the kidney during surgery.

The surgeon told me not to worry about the catheter – that it was not a big deal – and that “it’s not what I should be worried about.” Okay, then what should I be worried about? I think I can deal with pain – it’s the weird uncomfortable stuff that freaks me out.

We did all have a good laugh though. The surgeon came in to see me and my wife and I noticed a nick on his chin from shaving – a decent blood clot had formed. I said, “I hope you are better at kidney transplant surgery than you are at shaving!” At least that broke the ice.

Anyway, I am kind of upset right now and anxious about the surgery. I will write more in the coming days.

4-8-12

Yesterday was Passover and I slept through/rested through most of the Seder.

I got really sick to my stomach and lightheaded right before the seder began.

Everyone was really understanding.

I fell asleep about 11PM last night and got up now – 1PM.

The surgery is now 4 days away and I am ready.

Tomorrow we spend the day at Yale and get all the final testing and prep done.

4-6-12

Been a few days since I wrote. I have been running around getting pre-surgery items taken care of.

Finished some loose ends at work, picking up my living will today, and got dental clearance.

The past few days have been okay health wise, all things considering.

Yesterday was my Grandfather’s 93rd birthday. How ironic. He’s 93 – and doing great – and I am 32 and having transplant surgery. My father, rest his soul, has been in the ground for almost 7 years now.

I guess this is where perspective is key. I feel blessed. I am very close to my Grandfather and he has been instrumental in mentoring me in my career. I am lucky he is alive and still part of my life. Besides, of all my close relatives, he is the best suited to handle me going through the transplant. He’s a real tough SOB who lived through the depression, WWII, etc. This whole situation would have killed my other grandparents.

It is starting to hit me that I am going to be cut open and operated on. It’s a little strange. The thing that gets me the most though, is the idea that it’s 2012 and I am going to have major surgery that makes me feel better, but doesn’t fix the problem! Well, that’s not entirely fair. It fixes the broken kidneys, but creates new problems – limited immune system, the risk of my body attacking itself, etc.

That freaks me out. I have to go through all this and I am still sick for the rest of my life. UGH!

4-3-12/Pain

I pushed too hard today. I got up at 10AM for a business meeting and even though I needed a nap, didn’t take one this afternoon. I pushed through and ran some errands.

By 8PM – 3 hours after my body screamed for a nap, my head felt like it was in a vise and I was trying to hold food down. Literally an hour ago I was feeling 70%. I dropped to 10% very quickly. I spent the past 30 minutes or so in the fetal position praying for the pain to ease.

Luckily, the tylenol and ginger started to work a few minutes ago and at least take the edge off. Believe it or not, 20% feels much better than 10%.

Word to the wise: Listen to your body. When it needs rest – give it rest!

3-31 and 4-1

I rested most of the weekend and went to bed early – so I am writing my weekend posts now.

I spent Saturday with some close friends. Two of my closest friends have kids – 1 month apart from each other. Matt has Meghan, 15 months old, and Jeff has Zoe, 14 months old. Jeff lives about 6 hours from us so we don’t see him much. He does a good job of staying in touch and it’s always like we saw him yesterday when we do see him. He’s that type of friend. Matt is too, but usually, we saw him or talked with him yesterday anyway.

The kids were great – so different – but equally fantastic. When the visit was over, I had mixed feelings. First, it was a great distraction (giggling with them, giving airplanes, etc). Second, it’s nice to know how many people care for me. I will admit that it’s hard to be the center of attention though. I gave a toast to the “next generation of the gang,” and Matt gave a toast to my health. I preferred the first.

The other thing was I pray that those two kids never know what it is like to go through what I am going through. I can only hope that a) they live long and healthy lives (obviously), but b) that transplantation is viewed as primitive, invasive, and is unnecessary, sooner than later. I appreciate the opportunity, but also recognize that it is not an ideal treatment.

I know I have written a lot about how my perspective is better because of kidney disease, and part of who I am today is because of kidney disease, etc. However, that’s not to say I wouldn’t have reached those conclusions without kidney disease. It definitely accelerated the process, but it would be nice not to be 10 days from transplant as well.

3-30-12

Slept most of today, but didn’t feel ill, just really fatigued, for the most part.

Overall, today was one of my better days of late.

I am noticing that the more I sleep and the less I fight the fatigue, the better my symptoms are. I really feel for people that are in my position, but don’t have the luxury or awareness to sleep 15-17 hours a day.

Anyway, crashing a little now, so off to bed.

3-29-12

Posting on 3-30-12 here because I fell asleep early last night and just got up – 10:30AM today.

I felt pretty crappy most of the 29th and spent a lot of time in bed.

One interesting thing was I called my boss’s assistant and asked if he was in today to chat, nothing urgent. She emailed him in a meeting to let him know I called and he immediately emailed back to both of us asking if it was an emergency or I needed to talk. I quickly responded “no.”

I guess this whole thing is putting everyone who cares about me on edge. I am glad so many people are on my side, but also feel bad that I have become a burden in some regards. I think that’s something I will have to deal with for some time. I can also look forward to contributing in meaningful ways soon as well – not just receiving care.

3-28-12

I met with the psychiatrist at Yale today. We spoke about the potential for my mood to be altered by the post transplant medications. The steroids, which they usually use in high doses for a short period – days to weeks, in particular can make people agitated, have trouble concentrating, etc. She also mentioned that one of the medications I will likely take long-term can have similar, but less severe side effects as well. The bad news – memory and concentration issues are some of the potential problems – not ideal with the job I have. The good news – they are reversed if the medication can be stopped. In most cases, there are alternatives and the likelihood of side effects is much lower than with steroids.

Either way, it got me thinking, again, that this is a big deal. It’s life changing. I try to be nonchalant about it, but days like today make me realize how serious this really is, even if it is routine for the staff at the transplant clinic.

It’s not like I have choice – if I want to live anyway – but that’s not a comfortable position to be in. Yes, it is easy to say things will be better, and I believe that. However, it would be nicer, especially at 32, to be able to live my life without having to have transplant surgery. Don’t get me wrong, I know others are in worse shape and I am not asking for sympathy. On some level though, this really does suck.

Of course where would I be if not for kidney disease? Weird question, right? Kidney disease has helped teach me to cherish life and do things I probably wouldn’t have been able to do; finish my 1-year project at work 2 weeks before transplant, drive a race car, get up every morning and be happy I did, etc.

If nothing else, kidney disease has given me perspective. It has helped me to live life, not just be alive.

3-27-12

Today was a mixed bag. I slept most of the morning and for the first time ever, didn’t go to work because I didn’t think I could. In the past, I have had bad days and stayed home (I work from home often – it’s a 2 hour each way commute to my office in New York City), or been concerned about over-exerting myself. However, last night, I decided that I felt ill enough that the idea of being that far from home and having to travel on a long train ride were too much. I missed a meeting, but was able to have co-workers, who were supposed to be part of the meeting anyway, cover for me.

Something else weighing on my mind is how much my illness is affecting my wife Maria. She is very stressed and I don’t blame her. For me, it’s easy; I have to deal with it. I don’t have a choice. I have accepted that I am mostly powerless to control this. Maria has to watch me suffer though. In many ways, I think that’s harder and she feels more helpless and out of control than I do.

3-26-12

The stomach pain/discomfort, accompanied by the pain/lightheadedness got real bad this afternoon.

I had been feeling okay when I got up this morning, then, took a 3 hour nap. By mid-afternoon things were going downhill fast.

I had hoped to get some things done tomorrow, but will likely stay home and try to rest. The past three days things have gotten progressively worse. I have a pretty high tolerance, and my patience is waining. The discomfort is getting really old fast.

3-25-12

Another day of sleeping and having stomach pain. The best way to describe the stomach discomfort/pain is to equate it to sea sickness. It feels like my stomach is tied in a knot and is often accompanied by lightheadedness and/or dizziness when it gets really bad. My wife (Maria) got me ginger tablets and I am taking those 2X a day. They seem  to help a little.

Despite all this – I was able to finish a major project for work. It took me significantly longer than I would have liked – months vs. a week or two – but I finally finished it today. It has to do with something I plan to work on after transplant and it turned out well. It’s nice to know I can go into surgery feeling optimistic about work instead of having many questions unanswered.

It’s been really hard to balance taking care of myself and getting the rest I need with my intellectual needs. I want to work. I enjoy work. I have a family to support. Being a driven person makes being sick even harder.

3-24-12

4 hours later. At around 9PM my stomach started hurting, badly, and I felt somewhat lightheaded. I lay down for a minute…and woke up now. I am still tired. I also took a 3 hour nap during the day. I spoke to my  almost 93 year old Grandfather today (he turns 93 a week before my surgery). He informed me it was okay if I need to sleep 14+ hours a day at some point before the surgery. I told him I am already there. We then went on to have a lengthy conversation about being too proud not to drive a car when feeling ill. My Grandfather refuses to call an ambulance, under what seems like any circumstance, because God Forbid, he might end up in the emergency room. He of course, felt dizzy the other day and drove himself to the doctor. I had to explain that I don’t drive even when I feel sick to my stomach and/or lightheaded; a common occurrence these days. I don’t want to be off my game and I am 32 and a great driver (I drive a race car by the way – a story for another day).

At 32, I have to teach my 93 year old Grandfather about humility. I guess Kidney Disease is a humbling experience.

3-23-12

Today is my 32nd Birthday. I am thrilled. The doctors weren’t sure I’d make it to 30 before transplant after my FSGS diagnosis. With surgery now less than 3 weeks away, I have accepted what needs to happen, but of course, I am still somewhat scared. Yesterday was a bad day. I was going to start the blog yesterday, but was so fatigued I couldn’t handle sitting at the computer or even recording my first video entry. I slept about 15 hours and am feeling much better today…for now anyway.

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