September 2009


by George Taniwaki

A few weeks ago, my friend Carol Borthwick, who runs QEAN Medical, brought to my attention a website called MatchingDonors.com. It is a 501(c)3 nonprofit organization that matches organ donors and recipients.

2simRFLOGO  Image from MatchingDonors

The site is mentioned in a story that appeared on CBS News in 2005. The story featured two people who met via the website. Their surgeries took place at Porter Adventist Hospital in Denver (the city where the recipient lives) after their initial surgeon declined to perform them at an unnamed hospital that decided that donor-recipient pairs made over the Internet were ethically unacceptable.

The first donor-recipient pair to meet via MatchingDonors and follow through with a transplant also appeared on CBS News in 2004 (the story incorrectly states that the site is for-profit). By coincidence, these two people also had their operations in Denver, at Presbyterian St. Luke’s Medical Center. By another coincidence, I used their picture to illustrate my first blog post. And like the story in the previous paragraph, the surgeon who was originally scheduled to perform the operations declined after learning how the two met. The hospital ethics committee ruled that the surgery met guidelines and another surgeon at the hospital performed the operations.

Wanting to learn more about MatchingDonors, I joined almost immediately. Donors can register for free. Recipients pay from $295 for a 30-day membership up to $595 for a lifetime membership (meaning lifetime of the MatchingDonors website, not the patient). However, I wasn’t sure what my next steps would be. Until learning of MatchingDonors, I had never considered contacting potential recipients directly. Should I contact them one at a time or all at once? How do I pick? People post their pictures, bio, and story, so this is like a dating site, except to solicit organs. I expect that all of these patients are also on the national organ waiting list, so their use of MatchingDonors means they want to circumvent the list and find a compatible donor sooner. The MatchingDonors website says as much. I can see how this raises a variety of ethical issues. In an opinion piece in the Chicago Tribune in July 2007, Timothy Murphy, a bioethicist at Illinois College of Medicine, advocates against allowing directed stranger donations.

I realize that very few people ever consider making a live organ donation. It’s hard enough to make the choice if the recipient is a relative or friend. It is even harder to think about doing it when there isn’t an emotional connection to the recipient to drive the altruism. There may be many people who are in favor of the idea of a live donation, but are on the fence when it comes to actually making the donation to a “deserving” individual. I hope my blog pushes them to the “I can do this” side. But what if the unknown recipient is less than perfect? For instance, what if the recipient might be a drug abuser, or a convicted felon? What if the recipient might be mentally ill or poor and unlikely to maintain the rigorous and expensive antirejection drug regimen? Would you refuse to donate then?

If you aren’t willing to donate to just anyone, then services like MatchingDonors serve an important and valuable role in increasing the number of transplants by helping donors find a recipient with whom they can create a bond with that tips the scale in favor of donation. A well-argued rebuttal to the Chicago Tribune opinion was written by Tom Simon, who donated one of his kidneys to a woman he found using MatchingDonors.

The consensus regarding the ethical acceptability of various organ donation practices changes quickly. Thirty years ago, only donations from either closely related individuals were possible. But with improved immunosuppressant drugs, transplants from strangers, always deceased, became possible. Most hospitals preferred transplants using deceased donor organs over live organ donations because of the dictum of “do no harm” to the donor. However, because the outcomes were better, live donations became preferred, but still viewed with caution. Despite the availability of immunosuppressant drugs, hospitals only allowed biologically related individuals to be live donors. Then, about a decade ago, some hospitals began allowing spouses to donate. The permitted group then expanded to include friends, then coworkers, then nondirected stranger donations (which is the process that I am pursuing), and finally strangers that met specifically to complete a donation. However, this expansion of allowed donors is still controversial as can be seen in 2002 J. of Law, Medicine, and Ethics (subscription required). Today, about half of hospitals allow nondirected stranger donations. Currently, only a few hospitals allow directed stranger donations and the comments by ethicists are mostly negative, but I expect attitudes to evolve over time.

After joining MatchingDonors, I do a few quick searches. First, I find that there over 7,000 donors registered but fewer than 500 kidney patients. This is the opposite of what I expected. This may be due to the high cost of membership for patients, but it also shows the power of social networking websites to attract and engage like-minded folks to participate. I filter the 500 patients for AB+ blood type and find 11. Then I filter those 11 for Washington state, and find zero matches. So there is nobody on the list that matches me that might already be a candidate for surgery at UWMC. I could broaden my search to include other states or other blood types (with whom I could form an incompatible pair in order to participate in a pair exchange) but I’m not prepared to do either.

I occasionally receive email messages from patients on MatchingDonors. They all appear to be blast mails by a new member, a form letter saying why they need a kidney and why I should either donate my kidney to them or form an incompatible pair if we don’t match. The emails are a bit unnerving, but since they are not addressed to me personally, I don’t respond. I don’t think I will contact any patients and will continue to pursue a nondirected donation through UWMC.

For more ideas on finding a donor, see my Kidney patient guide.

[Update1: I just noticed that the Virginia Postrel article in Forbes that I cite in a July 2009 blog post mentions MatchingDonors as well as other ways that kidney patients search for donors.]

[Update2: Forming an incompatible pair with a recipient would not be a good strategy as explained in a Mar 2010 blog post.]

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I make a quick visit to the Univ Washington Medical Center to drop off my second 24-hour urine sample and have a blood sample drawn. Both are needed to calculate my creatinine clearance rate. This is my third appointment at UWMC.

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On my way back home, it is a clear day and I can see Mt. Rainier while driving across the 520 floating bridge. It is the mid-afternoon and there is little traffic as I whisk back to the office.

RainierFrom520

Photo by Radar Rider

It’s an enjoyable trip. However, I can’t imagine having to drive across the bridge every morning and night during rush hour. Ugh.

520_traffic185

Photo from WSDOT

Buried in the House and Senate versions of the mammoth health care bills pending in Congress are provisions that were previously separate bills, S.565 and H.R.1458, to extend the Medicare entitlement for coverage of immunosuppressive drugs after a kidney transplant.

As I mentioned in an Aug 2009 blog post, Medicare covers the cost of most dialysis treatment and kidney transplants, regardless of the patient’s age. However, it will only pay for 36 months of anti-rejection medication after a kidney transplant. After that, the kidney recipient must pay for the immunosuppressive drugs themselves (or through a pharmaceutical discount program, or private insurance, or through Medicare if the patient qualifies because of age or disability status).

I’m a libertarian and am usually against government subsidies for specific goods since they distort markets. But once the government decides to fund kidney transplants it is a waste of taxpayers’ money to not cover the cost of meds. As the Renal Support Network states:

“Immunosuppressive drugs are expensive, but the alternative is even more costly. Medicare spends $17,300 per patient on anti-rejection medications to maintain a transplant, but if the kidney transplant fails, the person returns to dialysis at a cost of over $68,600 per year to Medicare. And because dialysis is physically draining, quality of life often suffers too. This also includes the loss of an organ that can cost between $100,000 and $210,000 to transplant. The gift of organ donation is too precious in these times of scarce medical resources not to provide for sustaining its viability.”

There is a frustrating story in the New York Times last week that highlights this issue. It describes how a woman who received a kidney from her mother lost it because she became unemployed, no longer had health coverage, and was unable to afford her immunosuppressant medication. The story has a promising ending as she has received a second transplant, but the 36 month clock is counting down once again.

NYTimesKidney  Photo from NY Times

I would be very disappointed if the kidney I donate was lost simply because the recipient couldn’t afford his/her meds. I hope that doesn’t happen. However, knowing that the transplant may fail doesn’t deter me from proceeding without reservations.

[Update1: The House version of the health care bill, H.R.3962, passed on Nov 8. It contains the extension of Medicare coverage for immunosuppressive drugs after a kidney transplant.]

[Update2: Not everyone agrees that increasing the subsidy is good. See this later blog post for details.]

[Update3: The Senate version of the health care bill, H.R.3590, passed on Dec 24. It does not contain the provision to extend Medicare coverage for immunosuppressive drugs.]

[Update4: A 2008 study published in Health Care Financing Review shows that adding coverage for immunosuppressive drugs after transplantation to Medicare would cost the government more than paying for dialysis. The analysis ignores social costs and tax effects.]

I’m returning to the UWMC for my second appointment to have my PPD skin test examined. I also drop off my first urine sample for the creatinine clearance rate test and have blood drawn to measure my serum creatinine level. I check in at the front desk of the organ transplant center and take a seat.

While I am waiting, I overhear the receptionist telling a patient that even though he is the donor, he has to sign a financial responsibility form. The receptionist says, “Its difficult to explain, but you just have to sign the form.” The patient doesn’t look happy but signs his name. (Hmm, the UWMC really ought to address this source of anxiety for kidney donors.)

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Afterwards, as I am leaving the medical center, there is a crowd of people blocking the main entrance. They are all wearing business attire and saying farewell to a man wearing a black suit and black shoes. Then I notice his shoes are streaked with bright-colored paint. As I approach the group I realize the man in the center is the artist Dale Chihuly. Not sure what to do, I say “Hello,” tell him that I am a big fan of his work (which is true), and shake his hand.

DaleChihulyatPilchuck

Dale Chihuly. Photo from Wikipedia

This reminds me of an anecdote. Several years ago, my wife and I were in London on vacation. One day we visited the Victoria and Albert Museum. In the lobby there was a very large, amazingly beautiful chandelier consisting of hundreds of snake-like glass tubes. I mentioned to her that the design was highly reminiscent of the Chihuly style (I think “rip off” was the phrase I actually used). Of course, it turns out that it was a Chihuly. We had traveled a quarter way around the world in order to see a masterpiece produced by an artist who lives a few miles from our house.

VandA_Rotunda

Chandelier in lobby of the Victoria and Albert Museum. Photo from Wikipedia

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Oh, and my PPD skin test is negative, I don’t have tuberculosis.

by George Taniwaki

Yesterday, I had my (rescheduled) first appointment at the University of Washington Medical Center. The visit consisted of a physical exam by a nephrologist, an interview by the donor advocate, and a variety of medical tests that I’ll describe later.

My physical exam by the nephrologist, Elizabeth Kendrick, goes smoothly. I trust Dr. Kendrick as well as the other physicians and surgeons at UWMC because of its reputation as an excellent research and teaching hospital.

The UWMC has only recently joined the National Kidney Registry, so I may be the first donor from the Registry list that the UWMC has evaluated. I tell her I have been on the NKR donor list for almost two years. She is surprised. She posits that the reason I’ve been on the list so long is that hospitals use the NKR list as a last resort when a sensitized patient cannot find a local match. Since HLA-type matching is a low probability event, it means few chances of me finding a recipient.

Kidney Care

I meet with Dr. Kendrick. Photo by UWMC

I also have interviews with a donor advocate (part 2), transplant surgeon (Oct 12 and Mar 5), and a psychiatrist (Feb 10). All four must agree that I am a suitable candidate before the surgery can proceed.

For more information on becoming a kidney donor, see my Kidney donor guide.

[Update1: I’ve come up with a different explanation why donors with AB blood type are in low demand in kidney exchanges, see Mar 2010.]

[Update2: Added a photo taken by UW Medicine publicity department. This photo was taken in Oct 2010 during a follow-up visit a week after my surgery.]

by George Taniwaki

This is my first visit to the University of Washington Medical Center (UWMC) to be evaluated as a potential kidney donor. In addition to the interviews and a physical exam, the staff at UWMC performs several simple tests described below. If I pass these tests, I will be asked to return for more invasive ones.

Electrocardiogram

A standard electrocardiogram (ECG) consists of five pairs of electrodes attached to the body. I have to unbutton my shirt, but do not have to take it off. The nurse is quite proficient and applies the self-adhesive electrodes to my arms, legs, and chest in only a few seconds. There is no pain and the whole test only takes a few minutes.

The ECG trace shows that I have a functional systolic heart murmur. I’ve had it since a child and it doesn’t preclude me from undergoing surgery or being a kidney donor.

What is it? Electrocardiogram (ECG)
Why is it needed? Ensures your heart is normal
How is it done? Several self-adhesive electrodes are attached to your arms, legs, and chest. The electric potential is recorded on a strip of paper
Preparation None
Test time A few minutes
Risks None
Discomfort You have to unbutton your shirt/blouse. The test is not painful. The adhesive can leave glue on your skin but they rub off easily

Chest radiograph

A standard chest x-ray image is used to confirm there are no heart or lung abnormalities.

ChestXray

Sample chest x-rays (not mine), normal in A, Q fever pneumonia in B. Image from Wikipedia

What is it? Chest radiograph (chest x-ray image)
Why is it needed? Ensures your heart and lung function is normal
How is it done? You stand or lie on a table while an x-ray source is positioned next to you. An imaging plate is placed opposite you and an  x-ray image is taken. The image is then reviewed by a radiologist
Preparation None
Test time A few minutes to take the images. A few hours to review it (you do not have to wait for the results)
Risks Repeated exposure to x-ray energy can increase the chance of cancer. The risk from a single x-ray is negligible
Discomfort You have to remove your shirt or blouse. X-rays are not painful

Blood panel

The transplant center wants to review the results of five different blood tests, which require a total of 15 vials of blood to be drawn. I think this volume exceeds any other blood samples I’ve had taken in my life. Luckily, I’m used to having blood drawn since I’m a regular blood (actually plasma) donor. The blood tests include a complete blood count (CBC), hematocrit, human leukocyte antigen (HLA) profile, serum creatinine, and blood urea nitrogen (BUN).

The phlebotomist is quite proficient and the draw goes quite quickly and is nearly painless.

BloodVials

15 blood vials and paperwork. Photo by George Taniwaki

What is it? Blood panel
Why is it needed? Ensures you are healthy
How is it done? A blood sample is taken and collected into small vials and sent to the lab for testing
Preparation You should not consume sugary foods or drinks for 2 hours before a blood draw
Test time A few minutes to take blood sample. A few hours to run the tests (you do not have to wait for the results)
Risks None
Discomfort A needle prick in the forearm, there may be a slight bruise.

Urinalysis

Another common diagnosis tool is urinalysis. A variety of tests can be performed on a urine sample to assess kidney function and metabolism. Simple paper test strips can measure the concentration of chemical and biological compounds in the urine. These include nitrate, sodium, potassium, calcium, and phosphate.

The concentration of larger molecules such as protein, glucose, ketone, and creatinine are also measured.

Finally, other tests are used to measure pH, osmolality, specific gravity, and presence of cells, including bacteria and blood.

What is it? Urinalysis
Why is it needed? Ensure your kidneys are functioning properly. Also ensure you are healthy
How is it done? A urine sample is collected and sent to a lab for testing
Preparation You should not consume sugary foods or drinks for 2 hours before providing a sample. Drink a pint (500 ml) of water about an hour before providing the sample
Test time A few minutes to produce a stream of urine and fill a small sample jar. A few hours to run the tests (you do not have to wait for the results)
Risks None
Discomfort Some people (like me) find it difficult to urinate on command

PPD skin test

A nurse starts a test for tuberculosis antibodies called a  purified protein derivative (PPD) skin test. She injects tuberculin antigens in my arm, just under the skin. If the injection site becomes inflamed (called induration) over the next 48 hours, it means I have been exposed to tuberculosis. The injection doesn’t hurt, but the injection site looks like a blister. The swelling goes away after a few minutes.

PPD

Tuberculin injection site. Photo from Wikipedia

What is it? PPD skin test
Why is it needed? Ensures you do not have tuberculosis
How is it done? Tuberculosis antigens are injected under your skin. If it causes inflammation, you have been exposed to TB
Preparation None
Test time A few minutes to inject the antigen. Two days wait time for reaction. Then time it takes to travel back to the hospital or doctor for inspection of the injection site
Risks None
Discomfort A needle prick in the forearm, there may be a slight bruise. You have to return to the hospital or doctor’s office after two days to record the result

CCR test

Finally, the transplant coordinator asks me to collect two 24-hour urine samples taken one-week apart in order to conduct two creatinine clearance rate tests. They cannot use the result from the test I had done in Mar 2008 since it is over one year old now. I am sent home with the two 2-liter orange jugs I will need to collect the two 24-hour urine samples.

For a description of the CCR test and the summary table see Mar 2008 blog post.]

2LiterUrine

Two-liter orange sample jug. Photo from General Plastics

For more information on becoming a kidney donor, see my Kidney donor guide.

[Update: Added a summary table for each test.]

by George Taniwaki

Today, I had my (rescheduled) first appointment at the University of Washington Medical Center. The visit consisted of a physical exam by a nephrologist, an interview by the donor advocate, and a variety of medical tests that I’ll describe later.

My second interview is with the living donor advocate, Paige Kayihan,  a clinical social worker responsible for representing my interests during the transplant process. The purpose of the interview is to ensure that I am making my donation for the “correct” reasons (altruism) and not for personal gain, ego gratification, or because I don’t understand the risks.

PaigeKayihan

Paige Kayihan (left) with Ethiopian refugee children she mentors. Photo from International Rescue Committee

The interview is done jointly with my wife. Ms. Kayihan begins her interview by asking if I understand that having this surgery will bring me no medical benefits. (Yes.) Do I understand that surgery has rare but serious risks? (Yes, and given my background in statistics, probably better than most.)

Do I understand that I can decline to donate at any time, up to the day of the transplant surgery, even in the operating room, and there will be no consequences. The recipient will never know why the surgery was cancelled. (Yes.)

Do I understand that if I switch insurance providers after my operation, that any complications may be considered a pre-existing condition and not be covered? (Yes, that makes sense, but I didn’t know that until now. Wow, the potential financial costs that may result from post-operative complications are much higher than I thought. For an additional comment on the cost of post-operative complications, see an Aug 2009 blog post.)

Then she asks some emotional stability questions. Do I expect any emotional, financial, or social status benefits from my donation? (No, but would happily accept any that result.)

Am I under the care of a psychologist or psychiatrist. (No.) Have I ever had depression or anxiety? (No, but I can get depressed or anxious.)

Do I smoke, use alcohol or drugs? (I drink beer and wine, but only the good stuff.) Have I ever used illegal drugs? (Gee, yeah, I went to college in California in the ‘70s.) Which ones? (I don’t remember. But only because it’s been so long ago, not because my brain is fried.)

She asks if we (my wife and I) have discussed my decision to donate. (Yes we have.) Does my wife support my decision? (Yes, though she has concerns, especially if the surgery is not performed locally.)

Have I told my family about my decision to donate? (No, I haven’t, but I guess I will now.) Why haven’t I? (I’m not sure. I signed up to be a donor almost two years ago, but it never seemed pertinent enough to tell them until now.) Am I close to my family? (Yes, my parents and brother live in Denver, but I’m in contact with them regularly, by phone or email. I have cousin who lives here in Seattle and see her often.)

Would I continue to pursue the transplant if my wife asked me not to? (No, but I don’t think she will say that.)

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I also have interviews with a nephrologist (part 4), a transplant surgeon (Oct 2009 and Mar 2010) and a psychiatrist (Feb 2010). All four interviewers must agree that I am a suitable candidate before the surgery can proceed.

For more information on becoming a kidney donor, see my Kidney donor guide.

[Update: The new Affordable Care Act signed by President Obama on Mar 23, 2010 will forbid insurance companies from excluding pre-existing conditions from coverage. This may improve insurance portability for kidney donors. The ban on excluding pre-existing conditions doesn’t kick in until Jan 2014 though.]

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