Ask (and Tell) the Prospective Kidney Donor

Miscellaneous and Personal Stuff I Must Share
21

I know there haven’t been any more questions, but I just got back from my San Diego trip and I’m excited about it, so I’m going to share whether anybody wants to hear about it or not.

First of all, when I got into town, I got to meet the recipient and his husband for the first time. We spent a few hours hanging out in La Jolla, mostly at the beach, and got along swimmingly. It would have been so awkward if it had turned out that we didn’t like each other!

I spent nine hours at Scripps Green Hospital yesterday (Friday). I had a ton of blood drawn and had a chest x-ray, a CT scan of my kidneys, and an EKG. I also met with five people who will be involved in approving me as a donor.

The first appointment was with a general practitioner who did a physical exam and took a detailed health history. We had an in-depth discussion about why I wanted to donate, whether I understood the risk, and any questions I might have. This doctor is not an employee of the hospital and is there to be an advocate for the donor. He made sure I understood that I can change my mind at any time. He also has veto power. Even if the rest of the committee approves me, if he has any doubts, he can say “no.”

Next was the nurse who will be coordinating from this point. We went over consents and got paperwork signed. She pointed out that while she works for the hospital and obviously wants transplants to happen, I can back out at any time, and I can also always call one of the “neutral” committee members if I have questions or concerns. She answered my question about how I can be sure no one will accidentally throw my kidney away,like what happened in Toledo not too long ago. She explained that there would be three surgeons: mine, his, and the kidney’s. The third surgeon stays with the kidney at all times.

Then the social worker. More discussions of how I made my decision to donate, and more reiteration that I can change my mind.

Then my surgeon. More discussion of the risk, more reminding me that I can change my mind whenever I want. He showed me where the incisions would be and explained that the bikini line incision would involve less cutting through muscle than some other spots would. We discussed the medical gas used for laparoscopy, because I had more pain than I thought I should have after a previous laparoscopic surgery. He explained that, when they are removing a donor kidney, they put the gas in under lower pressure because high pressure can damage the kidney. This seems to result in less pain afterward. We’ll see. He is also willing to be in a silly video with me before surgery, which was one of my conditions.

Last of all was the nephrologist. He is another one that is there just for me, and not to try to make a transplant happen. He started right out with, “You know that this is basically legal assault and battery. If you do this, we are going to hurt you. We are going to cut you open and take out a perfectly healthy organ, and you are going to feel terrible for a while, and you could die.” More reminders that I can change my mind any time. That’s a big theme here. He also showed me a 3D computer image of my kidneys and the associated blood vessels, which was pretty awesome.

Everyone I talked to said that I seem to be an excellent candidate. They also said that if I change my mind, they will simply inform the recipient’s team (we each have our own team) that I have been declined for medical reasons. Half of my day was spent with people making sure I really, really understood that I could back out at any time and for any reason.

The committee meets the first week of every month, so if the rest of the blood tests get back in time and they are all good, we could find something out as early as next week.

22

Are you on any organ-donor specific meds?

I understand that China is now delaying (at least some) executions while feeding the condemned a med which somehow makes their (some) organs easier to transplant.
Did they slip you a bottle of anything? How long do they want you in the hospital per-surgery?

I don’t know the name of the drug or what it does - maybe dilate various bits of tubing to make it easier to sew?

23

They haven’t said anything about taking any medications ahead of time.

I will have to get some last minute blood tests during the week before surgery because they want to do another cross-match. I will be admitted the morning of surgery, and discharged after one or two nights if all goes well.

Speaking of medications, I forgot to mention that the first doctor said I shouldn’t take Motrin (ibuprofen) or Aleve (naproxen) afterward, only Tylenol (acetaminophen).

24

Is it just a case of having to match blood type, or is there more to being a match?

25

We are the same blood type and a 1/6 HLA match. The HLA match isn’t necessary, but it’s nice if you can get a higher match. They also have to do a cross-matching test where they actually mix my blood with his to see whether he has any antibodies that would cause him to reject my kidney. They do that one again the week before surgery just to make sure nothing has developed since the previous test.

26

This question may be a bit esoteric, but I have this recollection that in the past kidney failure patients used to build up quite a few antibodies to other people due to receiving many transfusions as part of treatment for anemia associated with kidney failure* but since the common availability of erythropoetinn this is no longer the problem it used to be. Is this true? If so, it would seem to make it easier to successfully transplant kidneys and lessen the chances of rejection.

  • Along with their cleaning/filtration functions kidneys produce a hormone called erythropoetin that instructs your bone marrow to make red blood cells. If your kidneys aren’t working they stop producing erythropoetin, which means your bone marrow stops making new red blood cells, which means life-threatening anemia down the line. Prior to genetically engineered erythropoetin, that meant regular blood transfusions to keep people alive.
27

Now, I’m confused - I read through the Lance Armstrong mess with EPO (clever use of new technology, kids) and am still uncertain.

As I understand the treatment (I am Stage IV CKD), Epogen (and Procrit, and one other) triggers the production of erythropoetin.
Now it seems that erythropoetin is being synthesized directly, as in "Amrstrong admitted using erythropoetin…).

So, are Epogen and its buddies now out of work? And, if erythropoetin is being directly injected, is it going into the marrow? If not, how does it get to the marrow?

28

Erythropoetin is the name of the naturally occurring hormone. Actually, one of several names, but let’s not get distracted.

Epogen, Procrit, and many others are the product of genetic engineering to replicate natural erythropoetin. There are slight variations from what your body produces (or would produce, if you’re in end stage renal disease).

So Epogen, Procrit, et al don’t trigger erythropoetin production, they trigger/stimulate erythropoiesis, which is a fancy way of saying “red blood cell production”, and the two terms are probably easily confused due to length and similarity of spelling.

The difference between naturally produced erythropoetin and what comes in Epogen, Procrit, and others is roughly analogous to the difference between naturally produced insulin and “Humalin”, which is insulin produced via genetic engineering.

Erythropoetin doesn’t need to be injected into the marrow directly, normal blood circulation will get it there. After all, it is supposed to go from being produced in your kidneys to the bone marrow and there aren’t a lot of alternatives under that scenario to normal blood circulation.

29

As I understood it, Epogen, Procrit, Aranesp stimulated the production of erythropoetin in the marrow, and there would be no difference between the hemoglobin/hematocrit produced in response to epogen et. al. and the hemoglobin/hematocrit produced by entirely natural processes.

So, did Lance and co get direct erythropoetin, or did they simply get Epogen or other “erythropoetin-stimulating agent”* and let their marrow produce the actual erythropoetin?

If this is correct the media stating that Armstrong and co “received” erythropoetin (EPO) injections is just sloppy - they received some chemical which caused their marrow to produce EPO.

    • aka “erythropoiesis-stimulating”, refering the process of red cell production
30

Erythropoetin is produced in the kidney, not the bone marrow. Epogen etc are synthetic forms of erythropoetin which, like the natural form, stimulate erythropoesis in the bone marrow.

31

l or r?

32

Just one more time, as you still seem misinformed:

Erythropoetin is produced in the kidneys, NOT the bone marrow. It’s what stimulates the bone marrow to produce red blood cells.

They got the genetically engineered erythropoetin and their marrow produced red blood cells. Again, erythropoetin comes from the kidneys, NOT the bone marrow.

Again, this is incorrect. The bone marrow does not produce erythropoetin. It responds to erythropoetin by producing red blood cells.

33

So epogen et al are simply synthetic erythropoetin. No new technology used for the doping.

My mistake was thinking there was a chemical between epogen and erythropoiesis.

Thanks for the patience!

34

I can’t answer this one, but I have forwarded it to my transplant team to see what they have to say.

35

Have you been informed of the medical condition and chances of survival of the recipient? I ask because of an article in yesterday’s Boston Globe (which is behind a paywall so I can’t link to it) about a person who donated part of his liver to his wife’s sister’s husband, and died during the removal procedure. The recipient still got the transplant, but died within a year. Years later, the recipient’s wife admitted to the donor’s wife that he had been so ill that he wasn’t eligible to go onto any transplant waiting lists - they thought his odds of survival were too low to justify using an organ that could go to someone with better chances of surviving. I don’t remember the exact details of the article, but I believe they’re trying to put guidelines in place to require or at least recommend that donor’s be given information about the recipient’s condition, subject to privacy laws.

36

Most likely the left, which is standard because it has longer blood vessels and is somewhat easier to get to. There is some question in my case because I have a lap band that they will have to be careful of, but my surgeon has dealt with that before.

My recipient is in pretty good shape aside from chronic kidney failure due to IgA nephropathy. He has lost a lot of weight in preparation for the transplant and hopes to go back to his old job of leading bicycle and hiking tours when this is all over. According to the nephrologist, living donor kidneys last an average of 17 years. When you take out other causes of death and just look at the people who don’t die of something else before the kidney fails, the average goes up to 25 years. My recipient will be 50 next month, so that’s pretty good.

37

Ok, here is the answer that I got:

“Yes, that is true. However, transplant recipients can also develop antibodies anytime they have foreign DNA enter their body. For example, people can also develop antibodies from pregnancies and previous organ transplants. Also, even with the availability of Epogen (erythropoietin)…it sometimes in not enough to treat anemia and renal failure patients still require the use of blood transfusions.”

38

Thanks for the info!

39

Hello everyone. I’ve been lurking here for years and enjoying you all very much, but this is my first post. I felt compelled to reply to this topic for one reason. Sixteen years ago I donated a kidney to a friend. Of course, as some of you have pointed out, any surgery has risks – even from a tonsillectomy. The medical center where mine was done wasn’t yet doing laparoscopies, so I have an approximately five inch scar on my right lower back/side. While of course there was pain for a couple of days I found it to be way less than the two abdominal surgeries I’d had years before; I think because abdominal muscles weren’t cut. My recovery time was short, though I have to admit I took a month off because I could.

Some people are asking why anyone would do this if it wasn’t a family member. The main reason I gave to the few who asked me was, “because I can.” I know that sounds terribly simplistic, but it’s really the truth. None of his family members were able to because of nephritis in his family. I did a great deal of research first. When I was found to be a great match, even though I’m in no way a religious or spiritual person, I just knew it was meant to be.

And, no, I was not a young person who thought nothing could happen to me; I was 53! Yes, I’m old now and my remaining kidney is fine. Better still, after 16 years, my friend’s new/old kidney is doing fine, too.

So, Silvorange, my very best wishes to you and the donee.

I’ll be more than happy to answer any questions.

40

Thanks for sharing your story. It’s good to hear that you are both doing well.