Hello there!

Hello there!

Wednesday, May 29, 2013

Nothing funny, I just need your help.

This is probably going to be the hardest, most scrutinized (by me) post I will ever write. This goes against every instinct I have but this post is essentially going to be me telling you why I need your help.

I don't know really how to begin something like this so I guess I'll just come out and say what's up. Last week, in the course of catching up with my doctor at dialysis he basically laid my situation out for me in this way: Find a living donor that is either a match or can go into the paired donor exchange or face the fact that you most likely will never be matched to a cadaver kidney. Meaning basically, find someone to donate a kidney or stay on dialysis for the rest of your life. A life that would be significantly shorter because of the aforementioned decades on dialysis. I have no exact numbers but every study I've read on the subject suggests that long term exposure to regular hemodialysis treatments will result in a higher than average morbidity rate. In plain English, I will have many more years ahead of me (not to mention better years) if I get off dialysis as soon as possible.

This is not easy news to get. Or process. I was given the option, basically, to put it out there and basically ask all of you to consider helping me or just keep this to myself and do God knows what. A lot of options entered my mind. I'm not going to lie, one option was to just stop going and let nature take it's course. This is not uncommon among dialysis patients with no chance of transplant. I've decided to take some very wise advice and not go that route and instead put myself out there in this way. Something I've never been comfortable with. Essentially try to save my own life.

It's been suggested that my attitude towards my dialysis and health in general can be interpreted as flippant or nonchalant. I guess I do that on purpose. I generally go out of my way to seem normal, or to seem less affected by dialysis and kidney failure in an effort to avoid pity, or to avoid the guilt of making people worry about me. By doing this, however, I can see how I could make it seem like my health situation was no more than an irritant and not something much more troubling.

I know that I have also given the impression that things are "normal" with my actions. Namely my smoking and my blatant disregard for certain aspects of my care that would probably make my condition more noticeable if I took better care to follow. I've done these things mostly out of some sense of rebellion. End Stage Renal Disease and dialysis come with so many do's and don'ts (mostly don'ts) that to avoid the feeling of totally losing control over my life I chose to keep smoking and not following my diet as closely as I should have been. While these things caused me trouble with my health more than if I had just quit smoking, took my binders when I ate and ate the right things, I wrote off the consequences as the necessary collateral that comes with retaining even a tiny portion of my autonomy over my own life.

I've come to realize in the past 6 months that disregarding my diet, while freeing, was only hurting me and recently I learned that it gives off an impression of not caring about my health that I never meant to put out there.The smoking I realized was not good for me many, many years ago but that was and has been harder to change though I have. I've quit many times with varying degrees of success and I'm doing it again.

The bottom line is this (and the hardest part for me to actually write): I need a kidney. I'm not going to get one through the UNOS list of cadaver donors and that doesn't bode well for my life expectancy.

I know there are concerns beyond my commitment to my own health. What would donating mean to you? It is a major surgery and should not be entered into lightly. Everyone in your family should have input into your decision to help. If, after all the pertinent parties are consulted, you still feel this is something you want to do and you get through the testing you may wonder what consequences giving up a piece of yourself would have on your own health. What is the surgery like? Will I be limited in any way? One question I've heard more than once, do I have to quit drinking? First off, no, you don't have to quit drinking. It'd be nice if you weren't drunk the day of the surgery but beyond that go nuts. The surgery is almost exclusively done laproscopically meaning they make two or three tiny incisions instead of one long one. There will be post-operative pain from the fact that they will fill your abdomen with gas to make room for the laproscopes to maneuver around and grab the kidney. Getting rid of that gas from your body is not painless but you will be prescribed pain killers to help you deal with it. Donating a kidney has never been found to have any effect on getting pregnant or having a healthy baby.

From the University of Maryland Medical Center website: "The risks of donation are similar to those involved with any major surgery, such as bleeding and infection. Death resulting from kidney donation is extremely rare. Current research indicates that kidney donation does not change life expectancy or increase a person’s risks of developing kidney disease or other health problems"

The following links have every base covered. The answer to any question you can think of is answered on these websites but should a question not covered arise feel free to ask me and if I don't know the answer I will move Heaven and Earth to get it for you.

http://www.livingdonorsonline.org/kidney/kidneyfaq.htm

http://www.umm.edu/transplant/kidney/qanda.htm

 If you are interested in helping and want to know what criteria you need to meet, they are fairly straight forward. For an actual you to me transplant you're going to need to be my blood type first off. I'm A positive. After that you will have a lot of blood drawn for matching and to check you out to make sure you are in good health. If you do not match my blood type but still want to give this a go that's great too. We'd do what is called a paired donation. Essentially you would be worked up the same way by the doctors then they'd go out nationwide and find others in the program who have non-matching donors and find one of their donors that I match with. Once found I'd get that kidney then, in as many steps as necessary to complete the chain, your kidney would get donated to someone else in the program, then their donor would donate to someone, and on and on until the person whose donor I matched with would get theirs.

I don't know what else to say except I understand if you don't feel this is the right decision for you, for any reason. But I have to try. I have to put my actual condition out on Front Street so I knew that all of you knew what I was actually facing. I know this isn't an easy decision and it definitely shouldn't be taken lightly. I understand what I'm asking for is a huge sacrifice and an un-repayable debt. I understand that I'm asking you for my life. Any consideration you give this matter, whether known or unknown by me, is immensely appreciated. Again, any and all questions are welcomed and encouraged. This has to be a very educated decision on your part. Please don't hesitate to contact me at all.


2 comments:

Unknown said...

Jason! I am A negative, I just spoke with my husband. He is on board, I am on board. I know you and I will not match due to RH factor but if I could donate to someone and you ultimately end up with one I want to try. I will inbox you my number.

Unknown said...

you wanna smodcast we gotta podcast, check out "Two Strangers One Podcast" at 2s1p.com. We are on Stitcher and iTunes