Post Transplant Feelings

This page is designed for me to be able to share my feelings regarding transplant as they come up. It’s kind of a free floating open forum, so please bear with me. 

 

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

 

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.

 

 

4-19-12

 

I am blown away by this whole ordeal. Half a century ago I would have died – but today – I have the opportunity to live an even “healthier” life. Having said that, I have some weird feelings about the state of my body and mind now.

First, I am now dependant on medication to stay alive. That’s a new variable and one that scares me somewhat on a different level than having kidney disease. I am a walking dichotomy; I have to hurt myself to help myself. My immune system has to be suppressed so it doesn’t kill the new kidney that is keeping me alive. Huh?

Second, I am weaker – in some ways. My immune system being compromised makes me more susceptible to illness and disease. That’s hard to swallow as is, but most importantly, means there are many balls in the air. It feels like inevitably, something will get me. I know I am overwhelmed right now, but feel like similar to kidney disease and waiting for the kidney to fail, now I am waiting for something else to go wrong. The new kidney to stop working, another disease to get me, medication interactions, etc.

Third, did I cheat death? Is G D okay with this? Was I supposed to die? Maria said to me that G D wouldn’t have let the transplant happen if it wasn’t permissible, so to speak, and that I am getting a second shot at life. I also feel that kidney disease has been a blessing in many ways – helped my perspective, etc. However, in my mind, I feel a little guilty about being alive today. I also feel terrible that others have to endure similar struggles, and worse for those that don’t have the opportunity.

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