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Wednesday, August 24, 2011

More alphabet soup and painting a Poopcaso!

Howdy folks. Probably by now you've been thinking "Yeah that ole kidney bean has probably chickened out". No, the process is just slow.

I cut myself shaving this morning and air started leaking out......

Not really. Wouldn't be surprised if it did though.I have had a lot of blood taken out this week. I've just completed the next steps in this process which is more lab work up of my blood. Here's the list of what's being checked....

  1. CBC/Platelets
  2. Comprehensive Metabolic Profile
  3. Lipid Panel
  4. HEP B Surface AG
  5. HEP B S AB
  6. HEP B Core AB
  7. HEP B Core - IgG, IgM, Total Ab
  8. HEP C PCR - (Quantitative)
  9. HEP C AB
  10. CMV - IgG
  11. EBV (Epstein Barr Virus)
  12. VZV IgG (Varicella-Zoster Virus)
  13. HIV 1/2
  14. RPR
  15. PSA (males)
  16. 2 Hour Glucose Test (Oh yeah, finally something I understand)
And also, the necessary mention of .....
  1. Stool for Occult Blood
  2. 24 hour urine collection
Before this round of tests, I had to fast for 12 hours. First came the six vials of blood to analyze for various components of the alphabet (see above). Once that was done the glucose test started. Basically this involves sucking down some syrupy sweet orange drink and then having your blood drawn 1 hour later and then again 2 hours later. I thought I was going to pass out, but overall it wasn't bad.

On the way out I was given an orange plastic jug and was told to collect my urine for 24 hours. Skip the morning's first evacuation and then collect every stream for 24 hours. I thought I might have a problem with filling it up but I do love my coffee so no problem there. The rules are, you have to refrigerate it. The reason for the collection is to check for creatinine clearance and protein.

Also, there's the matter of the stool samples which these days involves taking a brush and painting an improptu "Poopcaso" on cotton panels. They're just looking to make sure there's no blood.

Now if all of this wasn't interesting enough, I also donate blood platelets every month and I was scheduled to donate the next day, something I did with enthusiasm.

I am somehow wishing that this blog would be more exciting (like my effervescent regular blog writing) but somehow I just don't seem to muster it. 

You might be wondering who I am and the only reason I have kept my identity a secret is that I have to have time to break this news to people about why I am doing this.

I have done that. I just have one last thing I need to do before coming out with everything and I promise to do that soon.

I see this donation as a very matter of fact thing. If you can save a life and live perfectly fine by giving something up  why not?

Stay tuned,
Kidney Bean

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.

Thursday, May 26, 2011


I think the part about this that makes me think the most is that making this decision, when thinking about all the facts, just seems like such an obvious one. Unfortunately obvious and popular aren't even on same street.
I feel immensely better now that I have sought out others in the living donor community. Turns out, there's more than I thought and I most definitely am not alone.

Slowly I'm beginning to make friends with other living donors and it swells my heart tremendously and only solidifies this decision.

Before the first tests can be ran, you have to speak with a transplant social worker and that discussion happens on May 31st.

I have seen the question "Why don't you wait until you're dead and donate then?". Well, it's easy, the success rate for someone to have a successful transplant with a cadaver donor is less than with a living one.

Maybe you need something a little closer to home. Do you know someone who suffers from diabetes? An estimated 21 million Americans have diabetes, but another 41 million people have the prediabetic condition of high blood sugar, putting them at high risk for developing the disease in the near future.

Type 2 diabetes, moreover, is being diagnosed more frequently in children, something that was virtually unheard of 25 years ago. A lot of people waiting for kidneys are under 18. These are kids with their whole lives ahead of them.

It is an epidemic and unfortunately diabetes is the leading cause of kidney failure, accounting for 44 percent of the new cases.

The odds are very good that someone you know will need a kidney at some point.

Admittedly being a living donor isn't the sort of thing that everyone is cut out for. You can start by becoming an organ donor upon your death. One organ donor can save eight lives! Head to and sign up as a donor in your state. Organ donation doesn't violate any religious beliefs of any major religion and virtually all religions view organ donation favorably. Think of it this way, if you think you've been a miserable little turd and have doubts about facing your maker, this might help your odds. Just saying.....

Even if you aren't ready to make that leap, consider donating blood. Everything help. It really does.

Friday, May 20, 2011

Alphabet Soup

It’s May 20, the day before some religious nutjobs are saying that the world is going to end. I can't say that I'm worried (Matthew 24:36).

Frank Zappa said that it isn't necessary to imagine the world ending in fire or ice. There are two other possibilities: one is paperwork, and the other is nostalgia. Religious prophets notwithstanding I bring you paperwork.

The first thing I needed to get together was an authorization for release of medical records. These are the things that the hospital are interested in. Physical results, colonoscopy results, exercise stress tests, and if you’re a woman, mammogram and pap smear results.

Next is the kidney donor questionnaire. The usual suspects are there such as height and weight. There’s also, not surprisingly, a short section about your kidneys. Have you had any kidney problems? Ever had blood in your urine? Any history of heart disease?

Recipient info? Well this is the part I couldn’t fill out so instead I just wrote “Surprise me!”.
Another question was "nationality". This part surprised me a little. When researching donation resources I stumbled across a website that matched donors. I was very surprised to see that some recipients preferred other Americans or specific nationalities. Really? Your life is being saved and you want to know if someone is the same nationality as you?

Other questions I had to give some thought to.
“Have you discussed kidney donation with your family?”
Answer: Yes (Reality: No)

“If yes, are they supportive of your decision to donate?”
Answer: Yes (Reality: I don’t care)

I only say this because, while I am from a large family, I left home at an early age. I don’t have children and my love life has always been an absolute flaming pile of wreckage, so really it’s just me in this world. Being apart from my family and that environment for almost 30 years, I have almost nothing in common with them anymore.  I would never let them sway my decision about this or even decide my burial for that matter. (“Cremation” is the answer to your question).

Then there’s the tough question: “Why do you wish to donate a kidney?”. I was given 4 lines, which is nowhere near enough,  to answer it. The reasons are numerous, but the biggest is the simplest and most glaringly obvious. I have two of something and I can live perfectly fine with one. If the other could save someone’s life then why wouldn’t I donate it? It isn’t as if the science behind transplants is suspect or experimental anymore.

Amazingly if you sign up for the military and agree to go off to foreign lands to kill people, everyone wants to commend you while offering to give up a piece of yourself to save someone’s life is looked upon as being ridiculous.

Ever think that maybe our priorities are a little screwed up?

Lastly, the hospital needed a clinical documentation of my blood type which I duly requisitioned. In my case it’s A positive. “BAG”, “HGB”, “HCT”, “MCV”, “WBC” and a whole cornucopia of other indecipherable acronyms were on the form indicating various measurements of things in my blood, presumably all of which were ok. Not being a doctor nor staying in a Holiday Inn Express last night means I'm just in the dark about some things.

Staring at the list of acronyms, I never would’ve guessed that in my veins was not blood, but alphabet soup.

Thursday, May 19, 2011

The Thunderstorm

My memory is an angel that is swimming upstream in the river of time. It’s swimming to where it was born in Western Africa. I can trace to almost the very moment when I decided that I was going to do this. It was at the Tizi N’Test pass in Morocco, near the tail end of a traveling adventure in Western Africa and seeing this place was a near religious experience.

I’m a traveler and a buddhist, two things that go well together.  Constant meditation cultivates what’s known in Tibetan as “shamatha-vipassana” or, in English, mindful-awareness. The result of this is that every now and then, at very opportune times, I become very aware of where I am. I was very aware of the Tizi N’Test.

At the time all I could think of was how beautiful it was. It’s the place where the many valleys of Marrakech meet the Sahara. Lush greenery juxtaposed with red clay hill made for some beautiful scenery and I felt lucky that I was able to see it. I was then saddened when I realized that there are many who will never see it. 
Or on a smaller level, even things in their backyard.
People who have husbands and wives to love, children to raise and grandchildren to spoil. 
It was yet another moment of realizing how truly wonderful my life was (and still is!).

And then the thunderstorm rolled into my head, I actually could give life to someone. If you have two of something and can live perfectly fine on one and the other could save someone's life then why not? The science is certainly well trodden territory at this point.
I have no idea why or how this idea arose, but I made the decision at that point that I would at least keep it in my mind; an angel perpetually swimming backwards to that place in Morocco.

Swim no more angel, that current you resist is progress. It is now time to let go and let the current carry you to now, this moment.  You have evolved from memory into a determination.