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.

 

 

Comments
9 Responses to “8-11-13/Stable, but still tired/Organ Donation/Medications”
  1. Wife says:

    For those of you who are visiting David’s blog from New England (US), you can register to be an organ donor with the same organization that we did by visiting: http://www.donatelifenewengland.org
    Please remember that registering simply means that after you are dead and the organs are of no use to you, they will then be used for patients waiting for life-saving organs.

    If you want more information on organ donation, there are a bunch of great informational links here: http://www.donatelifenewengland.org/resources.html

  2. GodMan says:

    Hi There- I do not know how to reach you on email. I don’t have your contact details (email,phone etc). When I read some of your posts, you mentioned rejection etc, I want to know at times of rejection or after transplant post 2 months did you experience blood or protein in urine (1+ or 2+ not trace). Putting other ways, at time of rejection episodes, do we notice above in urine or it wont be found or if found, it comes back normal once it is set?

    • dakski says:

      I do not recall a high protein reading in my urine. I also had mild rejection episodes that were dealt with swiftly.

      I could be mistaken, but it seems like something I would recall and/or have put in the blog.

      Currently, I do not have a high reading either. My protein urine random is .16 G/L- just normal. My Protein/Creatinine Ratio, Urine, Random, is .2 MG/MG CR. It should be .1.

      Neither are items of concern, as they would be much higher if the FSGS was reoccurring.

  3. Mallory says:

    I just found your blog and I have to say your story is inspiring. I am 26 and need a heart/liver transplant. It is comforting to hear how other people cope and show such courage. Thanks for sharing your story, your family will be in my prayers.
    Mallory
    http://transplantlifeasweknowit.blogspot.com/

    • dakski says:

      Mallory,

      Thank you for your kind words.

      I wish you the best. Be strong. You don’t know how strong you really are until you face something like this. You will surprise yourself with your strength.

      Also, as hard as it is sometimes, try to keep a smile on your face. It will help you and your caregivers get through this ordeal.

      Take care and be well.

      David

  4. Sherri Jones says:

    David- I am post transplant now for three weeks .All my tests come back great and doctors say everything Is on track . The problem us anytime I have a weird feeling , or a minor pain , I think my body’s rejecting the new kidney . How do i relax and not be so scared of rejection all the time ?

    • dakski says:

      Sherri,

      First, congratulations on your new kidney.

      In my experience, I never had pain in rejection. I had pain from the surgeries, but never from rejection itself. The test the doctors do regularly should spot rejection.

      Also, and they should tell you as well, look for changes in urine output, signs of dehydration, etc. I don’t think pain is a symptom, or at least wasn’t for me.

      My 2 cents is you are still healing from the surgery itself. It takes a long, long, time for that to heal completely. In fact, it still feels tight 2 years later! From the incision I have down the belly for the ureter revision, I still have pain and tightness when I cough or sneeze. It feels like it will all rip apart! It doesn’t though.

      Regarding relaxing and state of mind. Sometimes we just have to have faith. Most importantly faith in ourselves that we can handle whatever comes our way. Secondly, an understanding that some things are not in our control and trying not to worry about those things.

      You have enough to worry about. Watch your diet, take your medicine, and try to enjoy life! You should be feeling much better already, and if not, soon. Control the things that you can control and let the doctors and faith take care of the rest.

      Wishing you the best in a speedy recovery.

      David

      P.S. Feel free to reach out anytime.

  5. GodMan says:

    Hi There – I am doing perfectly fine till last week with creatinine 2.2 post Transplant suddenly I see BK Virus <5000 copies (High) and I didnot reached the doctor yet hoping it would go off or medical error.Then I turned to your blog after an year to see if u had such and surprisingly, I see you with BK virus ( treated). I really wanted to know, what to do? How Can I get this off? What was the procedure or medicines you got for the BK virus treatment? How did the creatinine effected? Is BK VIrus really off from your blood? Does this BK Virus has special tests? How often you did Creatinine tests when your immosupression is reduced? Did they started with a biopsy?What is my next steps? If possible, can you reply me ASAP.Your response will let me take next steps….

    • dakski says:

      I think more people get it in their blood than get it in the kidney. So you may not have to panic yet. All I can say is what they ended up doing for me to get the virus down to trace amounts in my blood.

      For me, they ended up reducing my cellcept and raising my prednisone. Apparently BK is more sensitive to cellcept. There are drawbacks to being on a higher dose of prednisone, but I have not had a rejection episode since they figured out the right mix almost two years ago.

      Basically, it’s a balancing act. They have to increase (at least part of) your immune system to fight off BK, but not so much that you go into rejection.

      Good luck.

      David

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