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Wednesday, June 22, 2011

Now onto the typing.... (My blood not the blog. Well ok, maybe the blog too)

4 vials of my blood. Ready to go!
With my four vials of blood drawn and sealed, I marched to the Fedex office to send them to Johns Hopkins.

With this, I now finally feel like I am rolling. Up to now it's just been questions but now, here it is in black and white, or more accurately, red.

I won't be knowing anything for the next two weeks about this. This blood draw was for the tissue matching phase.

Tissue matching is complex and it's really only about matching my genetic material up with someone else. All people have genes and these genes express all of our features that make us unique. Blood and tissue proteins, which are unique to each person or they occur in unique pairs among several people. These proteins are called antigens and they can be quantified and determined in blood tests. A set of these antigens create a genetic profile of a person.

There are six specific antigens in each donor and recipient that doctors are concerned about. They are called the major histo-compatibility complex. It just relates to how a donor is more or less compatible with a recipient (or many!)

The best match is a six antigen match. This isn’t as easy as it sounds. Even among siblings having the same mother and father there’s only a 25% chance of a match. This made me think about altruistic donation for a bit. Even if one of my two sisters, who are full blooded to me, happened to need a kidney, there’s a 75% chance that it would never work.

Occasionally in the general population there is a random match. In terms of the testing that is done today, that is the best outcome. Donors who only match five antigens don’t do as well over the long term as someone with six.

The success numbers only go down from here i.e. someone matching five antigens does better than someone who matches four. Four does better than three,.. and so on.

The classic case of a body rejecting a kidney is because the antigens don’t match.
You might be wondering how anyone ever matches up to anybody in this situation. Well, here’s the good news: immunosuppressive medications have improved greatly to the extent that even poorly matched folks still have  a chance at life. In fact, and this is the amazing part, even zero matches can actually work!

What makes the success even greater is having the kidney to come from a living donor. That’s key and it’s something I think that tipped the scale in favor of me choosing to do this now, while I am alive, than to wait for my demise, however that may happen.
There are very real benefits to being given a live kidney versus a cadaver kidney.

1. Studies have shown that recipients of a live kidney just plain live longer.
2. Recipients who have had their transplant prior to dialysis have shown better long term survival rates
3. Receiving a kidney from a live donor actually gives the recipient, donor and their families the ability to schedule the surgery when it’s convenient.

Knowing all of this just made me feel all the better as I sealed up the bag with my blood and sent it on its way. In two weeks I’ll know more and frankly, time couldn’t be going any slower.

Instead of waiting two weeks, just leave your email address in the box on the right in "Follow by Email". You'll get the update automatically.

Kidney Bean

Tuesday, June 14, 2011

Friends, common chords and progress.

Hello friends and sorry about the delay. Things don't work extremely fast in the organ donation process so I haven't been able to update things as speedily as a well read blog should be.

Good thing this is not a well read blog.

About a week and half ago I met three living donors here in Washington DC.  A. from New York is a mentor to me on this journey and A. got to meet C. who was her mentor for the first time in person. R. also came and she is a friend to C. who happens to live in the same city. None of these are to be confused with G. who is another mentor of mine who lives in Seattle and I only include him because, well, I'm having fun with letters.

Over glasses of wine and sangria we sat around discussing the process they each went through. This, by the way, dispels myth #1, you can't drink with one kidney.

Of course, they each said that people looked at them oddly, probably not unlike the look you would get from a man who you've just informed that his daughter is going with you to Juarez. Complete puzzlement. I expected this much. No one of the C.A.R. (which I'll call all three) was particular about a religious affiliation except C. who happens to be Jewish. Which dispels another myth, you can't donate a kidney if you're Jewish. In fact it doesn't violate any religion, at least, any popular ones.

The talk later turned to movies and which ones we liked regarding organ donation. "Seven Pounds" was a favorite, as was "21 Grams". If I had thought about it I would have mentioned "Never Let Me Go" but the sangria dulled my recall abilities although I did manage to get "Heart Condition" in there and no one had seen that.

What touched me the most was the stories that each had about their recipient. I still stand by my position that I only care to meet my recipient if he/she wishes to meet me. I was informed by the C.A.R. that they each too had that same position and each recipient HAD to meet their donor.  I can understand that, how do you NOT want to meet the person that saved your life? Question is, what do you say to someone like that and I have no idea what that will be. A. has mentioned that one of the first things that her recipient informed her of was that she was overjoyed at being able to pee! Normally! I must admit that that threw me into a fit of laughter and at the same time just made me want to burst with happiness at knowing what that felt like being in her position. A.'s recipient is a 27 year old woman who was happy that she could now have a kid. Imagine!

We didn't sit around long talking much, but this much I know, the society of donors is a special one. If anything it was wonderful how we would each talk about how we felt about the process, and life in general and we all amazingly seemed to be on the same chord. 

As far as other updates, my social worker interview went extremely well and I'm happy to report that my tri-state killing spree, committed when I was younger, did nothing to render me as ineligible. I'm kidding of course, it was only in two states.

I am now waiting on my tissue typing kit to show up. My blood will get drawn and the process of matching up with a recipient begins. I'm so happy I could burst. Again.

Also, I'm not known as a Jeffersonian speaker unless you are talking about George. I work full time and I have two college courses I am taking so I don't have time to do rewrite after rewrite. Sadly my prose does not flow forth like oil from a 1972 AMC. Probably easiest if you just leave your email address on the right side of this page and my latest update will show up in your email box!

Wow, what will they think of next?
Kidney Bean

Wednesday, June 1, 2011


Today I spoke with my assigned social worker. This part of the exercise is intended to make sure that you aren't donating for the wrong reasons. It was supposed to be a 30 minute talk that ended up being an hour, mainly because I am a chatty Kathy sometimes.

OK maybe all the time.

Thing is, I shouldn't like to talk about myself so much and it surprises most people when I say that I don't. It's just that SO much has happened to me in my life.

What made you think to donate a kidney? I went ahead and recounted the answer that you, dear reader, can find in installment one of this saga. (See how I don't make you suffer?). Next came the questions about the risk. I do know the risk but the social worker felt compelled to point them out again. There's a risk of infection and there's a risk of death. These numbers are astronomically low, but still it is surgery after all.  I feel like I take much more of a chance with my life getting behind the wheel everyday and driving to work.

Am I ok with the possibility that my kidney might get transplanted, fail and it would have all been futile? Yes, absolutely. All you we can do is try.

Would I like to meet the recipient? Not particularly. I'm not doing it for any kind of applause, but I understand that the recipient may want to meet me for some sort of closure. I'm happy simply knowing that I have helped save a life.

If there's one thing I have learned it's the futility of pondering the infinite number of variables associated with this.

If it doesn't work am I really going to know anyway? Probably not. I'm just going to assume that it will.

Do I have a history of arrests? No
Illegal drug use? No

Now onto medical history. Any surgeries? No.
How about vaccinations?

Uh oh.

Since I travel so much I have had vaccinations for practically everything. Name it, I've had it. Yellow fever, rabies, mumps, rubella, the list goes on and on. The only thing I haven't been vaccinated against has been Japanese encephalitis. Thankfully my vaccination history was just a curiosity.

I was informed that as a non directed donor that my kidney would most likely be used in a chain. The idea behind a chain is that couple A (person A1 and person A2) come in and one of the two needs a kidney. Person A2's kidney doesn't work with A1 but mine does. So my kidney goes to A1 and A2's kidney goes off to be matched with a compatible donor. It's a pretty cool idea.

Overall it was an uneventful interrogation, although if I say that I wasn't nervous going into it I would be lying. Next step should be the beginning tests.