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The Journey to Transplantation Begins


Its been a long time coming, but I've finally decided I'm ready to pursue a transplant. With almost three years of hemodialysis "under my belt" (or in my case "stuck in my arm") I guess its about time for me to be ready for this, right?

I wish it were that easy.

I haven't been writing in this blog very frequently for the simple fact that I've had a hard time facing my own emotions about kidney failure, dialysis and transplant, as of late. I realized I needed to go through what I've been feeling in order to prepare myself for what is ahead. I know how I've been feeling is "normal" but I just had to do it alone, on my own terms.

To some, a kidney transplant might seem like the simple, obvious choice. But for me - well, it never has been. Its a complicated and sometimes confused thought-process, and I'm just starting to figure it all out. Or at least I'm ready to face it and do my best to figure it out...

Kidney disease has been a part of my life for the majority of my life. When I reached kidney failure three years ago, it had been part of my life for almost half of it. I can't really remember, anymore, what life was like as a "normal, healthy person" because it feels like I never have been. And I certainly have never been "normal" or "healthy" as an adult. So, in a way, kidney disease was just part of who I am, like you might think of having curly hair as a part of you, or a deformed pinky-toe, or even a birth mark. Its just always been there, and I know no different life. No, kidney disease has never been "WHO" I am, but it has always been a part of me.

Getting a transplant immediately following my kidney failure would have been too soon. It would've presented a lot of opportunities for unstable emotions and thoughts. After all, kidney disease is all I've known, right? In a sick and somewhat twisted sort of way, I've been afraid to change... even though the logical voice in my head argued otherwise.

So, my kidneys failed, and life went on. I started dialysis and that was that. I always knew in my mind from the very first minute I was diagnosed with this annoyance that my kidneys would one day fail... and, frankly, I'd accepted it long before reaching that point. In the beginning of kidney failure, and for a little while after, knowing a part of me no longer worked the way it should hurt (emotionally) - but only in the way that one knows they have to get a shot in the arm, then it happens, it hurts briefly, and then everything moves forward, uninhibited by brief moment of pain. I'm good at moving on, plowing forward, burning bridges, etc.

In the beginning of kidney failure, I wanted... no, NEEDED... to prove to myself that I could live a perfectly 'good' life while on dialysis. I felt this way because I know that like dialysis, transplantation is just a 'treatment' for kidney failure, not a cure. When I first began dialysis I wanted to reassure myself that I could live just fine on dialysis, just in case I had a transplant that didn't work. I realize that this makes me sound like a pessimist; I think of myself as more of a realist - transplants do fail and they don't usually last as long as you see on the Discovery Health channel. The real reality is, I will probably need more than one transplant in my lifetime because 1) I will hopefully outlive the statistical lifetime of a graft; 2) there is a 1 in 5 chance that my specific kidney disease (FSGS) will reoccur in the transplanted organ. Knowing those two things made me pause (for about three years) to consider how a transplant would change me.

First off, knowing I might need more than one transplant is a very nerve-wracking thought. Not only is it a major operation, but the more transplants one gets, the more antibodies one's body builds up aginst another transplant - making each transplant more difficult.

Secondly, knowing that my kidney disease reoccurs 20% of the time in the newly transplanted organ has always felt like a gamble. I know 20% means I have an 80% chance of no reoccurrence... but, like I said, I'm a realist - I've always focused on the 20%, instead. I don't know if I could go through another 12 years of slow kidney decline before kidney failure again. Doing it the first time was difficult enough. But a second time? The verdict is still out...

I bet you're wondering what changed my mind... what finally made me decide a transplant might just be a good thing? I guess the loss of five of my close "dialysis friends" in less than 12 months, and the 4 surgeries I had on my malfunctioning access arm earlier this year pretty much sealed the deal. I decided enough was enough.

This isn't to say that the decision to try for a transplant has been easy. It hasn't. Its be wrought with emotion and stomach-twisting anxiety. But you know what? I think that's good. I think it means that I really understand and appreciate the responsibility of a transplant. I think it means I've analyzed my thoughts and every side of the idea from an objective viewpoint. Most importantly, I think it means that I do not take the idea of transplantation lightly, or for granted. And, I think that's a pretty healthy outlook.

In my next post I will write about my beginning experience with the "transplant information class" I attended last week and the "transplant evaluation" I also completed. Its all very nerve-wracking for me to think about, but I'm working through it in the only way I know how - after all, isn't that what BLOGS are for? *smile*

Test Results

At today's doctor's appointment I found out a few interesting facts about the heart tests I had week before last. My heart is slightly enlarged and not pumping as much blood as it should. I also have one leaky valve (it only leaks a little, though) and one of the chambers of my heart is the wrong size, I think the doctor said too small. Nothing to panic about, nothing dangerous, just something to keep an eye on. I've never had any heart tests done before so all I know maybe I've had this all my life. Or it could be related to kidney failure and hemodialysis. Next week I have to go back for a stress test and two other tests that I can't remember what they are. Then I might be referred to a cardiologist to be monitored.

Heart Tests

Today I had some tests done to look at the function of my heart and lungs. I had a nuclear lung scan, a chest x-ray, an ECHO cardiogram, and and EKG. On May 2nd I go for two more tests. All of these tests have to do with transplant requirements, but also because I've had a lot of shortness of breath lately.

Transplant - The Beginning

I decided this week that I'm pretty sure I'm ready to begin the process to get a kidney transplant. This has been a long hard road to reach this point of emotional and mental acceptance, but I'm ready to take on the challenge. I filled out the initial paperwork and mailed it today and my doctor's office has scheduled all the testing (EKG, ECG, chest x-ray, abdominal ultrasound, etc.) over the next month. My brother is interested in donating a kidney to me and he happens to be the same blood type as I am (although we don't know if he's a tissue/type match) my mother also has the same type. We'll see what happens next.

It will be a couple of months before I meet with the people at the transplant center. It gives me more time to get used to the idea of going through a major life-changing surgery.

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