Transplantation

Maybe it's because I've had a lot of extra time on my hands, but I've been looking into PKD stuff lately. It's really lame, but I like to be informed. Now, there is a 50/50 chance that a person with PKD will progress to end stage renal failure and need a transplant or dialysis. So I've been looking into what I would want if I happened to be one of those unfortunate 50%.

You have to know that there are different gene mutations that cause PKD. The most common is the PKD1 gene mutation. Someone with this mutation has the shortest life expectancy of approximately 53 years old.

In this case, I would want dialysis. If we can afford it and I am not suffering too much, I would probably do it. Maybe I would have kids by then, and I'd definitely miss Stephen, so I'd want to stay with them as long as possible. Obviously I'd want to stop sometime, and that would be 60, I imagine.

There is another mutation, PKD2, that is much rarer, but has a higher life expectancy of 69.1 years old. If this is the case, I would most likely end it there. 69 years old is a long life, if you ask me!

Most importantly, as things stand now, I would not want a transplant. No matter what age. Members of my family have already volunteered to give me a kidney, which I love and am grateful for, but I would not want one. I don't know how to tell them this, because I don't think they'd understand.

As they see it, a transplant is the best option. New kidney, everything goes back to normal, and life goes on. However, that's just not how it is. All the heart problems will remain. If I don't get a live transplant, those suckers stay in and the pain they cause would continue.

But that's not even the worst of it. I'd have to take up to 30 pills a day just to keep the new kidney from being rejected. I know I'm going to forget one of those. No one tells you these pills DOUBLE your risk for 32 types of cancer. They cause you to gain weight in weird places, high blood pressure and cholesterol, DIABETES, cushing's disease, facial hair growth, paper-thin skin, bruising, hair loss, and they increase your risk for all kinds of infections because these drugs are suppressing your immune system.

I realize they are working on things to help with transplantation and they're working on one drug right now to slow the progression of PKD, but if there are no changes to the way things are done, this is how I'd want it.

Want to see something gross?
http://www.nejm.org/doi/full/10.1056/NEJMicm0905399

EDIT: Well, I seem to not be a perfect candidate for transplant anyway, due to my heterozygosity for Factor V Leiden. http://www.ncbi.nlm.nih.gov/pubmed/11502996