A Self Portrait of the Artist As a Young Man

I saw M. this weekend, and he looks very good. He just finished another quarter at art school. This one was put on "the wall," the place for showering praise on students when they do well. N. is going down to visit him next weekend for St. Patty's day.

Cruel Effects of Organ Shortage

The ripple effects of desperation resulting from the organ crisis can be felt all around the world. As wait times grow, so does the black market for organs. The New York Times today published a story about kidney theft in India. An illegal transplant operation supplying domestic and foreign recipients was busted in Gurgaon, India this week, but not before an estimated 500 people's kidneys had been removed.

Many of the donors were day laborers, like Mr. Mohammed, picked up from the streets with the offer of work, driven to a well-equipped private clinic, and duped or forced at gunpoint to undergo operations. Others were bicycle rickshaw drivers and impoverished farmers who were persuaded to sell their organs, which is illegal in India.

Although several kidney rings have been exposed in India in recent years, the police said the scale of this one was unprecedented. Four doctors, five nurses, 20 paramedics, three private hospitals, 10 pathology clinics and five diagnostic centers were involved, Mohinder Lal, the police officer in charge of the investigation, said.

Obviously, there is a lot of money to be made off the failure of governments to address the organ crisis.

Anti-rejection advancements

NPR's All Things Considered had a story today about new techniques to prevent organ rejection in transplant patients. Interestingly, researchers at Mass General in Boston published results of recent trials with transplant recipients who also received bone marrow from their living donors. Apparently, the bone marrow from the donor keeps the recipient's immune system from recognizing the new organ as foreign--at least in the few cases that have been tried. While rejection drugs have become increasingly effective, they have many toxic and discomforting side effects, and they are very expensive.

By the Numbers

I downloaded and graphed some data from the Organ Procurement and Transplant Network.

First, the waiting list. Currently, there are over 74,000 on the list, so the trend has continued.

Source: OTPN/SRTR Annual Report 2006.


Each year, candidates are added and removed from the list for various reasons. This is the net result for each year. It is always positive.

Source: Based on OPTN data as of January 14, 2008.


Kidney donation rates are on the rise, but they are still not keeping up with demand.

Source: Based on OPTN data as of January 14, 2008.

Finally, these are the people who have died each year while waiting for a transplant in the US:

Source: Based on OPTN data as of January 14, 2008.

Revolutions Brewing Across the Pond

The UK newspaper The Guardian has posted a series on organ transplantation, "Calls Grow for and Organ Transplant Revolution." A task force will release a report on how to improve the UK's transplantation system, including the addition of an organ donation body in the National Health System and stepping up the quality and quantity of transplant coordinators in hospitals. England's chief medical officer, Sir Liam Donaldson, is advocating to change the organ donation laws in Great Britain from an opt-in to an opt-out, or "presumed consent" system in order to cope with the severe organ shortage crisis there. British Prime Minister Gordon Brown backs these changes. An editorial makes the case for the presumed consent system.

In the UK, there are 9,600 people waiting for an organ and it is considered a crisis that is demanding policy attention. An estimated 3 Britains die every day waiting for a transplant. In the US, meanwhile, there are 97,901 people waiting for organs (as of today), including 74,132 waiting for a kidney.

The article "One Transplant Kidney Can Save My Son's Life" relates several personal stories of people waiting for transplants and of families who have consented to donation. The article also provides a nice comparison of European transplant systems. Again, Spain is at the top of the list.

World view

· The UK has an opt-in system of organ donation. People have to be willing to donate some or all of their organs after death. They must sign the Organ Donor Register, a system sometimes called 'informed consent'.

· Germany, Ireland, the Netherlands, the United States, Australia, Japan, Canada and New Zealand operate similarly.

· Many other European countries operate a different system, known as opt-out or 'presumed consent'. Unless a person records in writing their unwillingness to give organs, it is presumed they have consented. This usually, but not always, produces higher rates of organ donation than in opt-in countries such as the UK.

· Spain, Italy and France have a 'soft' opt-out system, whereby the families of potential donors are still consulted and can, in effect, refuse permission for body parts to be retrieved.

· Many British transplant experts cite 'the Spanish model' as the best. Spain has the highest rate of organ donation in the world: 33.8 organs per million of population compared to just 12.9 per million in this country. In Spain, 85 per cent of relatives approve donations and just 15 per cent refuse permission.

· Austria has a 'hard' opt-out policy in which families are not consulted. If the individual has not opted out in writing, he or she is considered to be a donor.

· The US system of 'required request', or required referral, compels health professionals to inquire about the possibility of organ donation when someone is close to death. Under the required referral guidelines, 'it shall be illegal, as well as irresponsible and immoral, to disconnect a ventilator from an individual who is declared dead following brain stem testing without making proper inquiry as to the possibility of that individual's tissues and organs being used for the purposes of transplantation'.

Thanks to Miguel for passing on the links.

One of Many

The New York Times Magazine ran a story on the kidney shortage this week, "Desperately Seeking a Kidney." It was yet another personal narrative of waiting, uncertainty, and muddling through the transplant process. The author conveyed certain things very well, such as the frustrations and emotional roller-coasters associated with the transplantation process. She also discussed what it was like to have people promise a kidney only to back out later--numerous times. This is something I haven't read much about, but it must be tortuous to get your hopes up and then have them dashed over and over again. My brother was really lucky that he found a willing match so quickly.

However, there were also some parts of her article that bothered me. For example, she states a few times that she was afraid to ask her friends and family to donate. I have trouble understanding that because it seems like the first thing that came to mind for us, like an obvious choice. Whatever petty differences we may have, when it comes to saving someone's life I can't see how one could have been hesitant just to ask.

The other thing that bothered me a little bit is that she sometimes seems to judge potential donors for their choices not to go forward with it. I understand her anger at the man that she met through the online donor matching site, but I don't think it is fair to judge friends or acquaintances who consider donating but then decide not to for whatever reason. Its a very personal decision, and she should respect that.

She also seems keen to advocate for organ sales, which is another thing that I am very hesitant about for reasons I discussed in the last post. I agree that the lack of organ donation is a problem, but there are ways to incentivize and improve the system we already have. I did like the idea of giving all kidney donors Medicare for life. That is a step in the right direction.

Organs in the news

Some of the more grotesque sides of the organ transplant debates have shown themselves in the news this week, first with the Wall Street Journal reporting a renewed call for Organ Sales. The article tells the story of Dr. Matas who is traveling the country advocating that selling organs would save lives:

"There's one clear argument for sales," Dr. Matas told a gathering of surgeons earlier this year. The practice, currently illegal in the U.S., "would increase the supply of kidneys, save lives and improve the quality of life for those with end-stage renal disease."

Countering his argument, another doctor makes a case for the ethical implications of such a policy:

"Payments eventually result in the exploitation of the individual," says Dr. Delmonico, who also worries about encouraging black-market sales both here and in developing countries. "It's the poor person who sells."

Yeah, good point. Aren't there other ways to incentivize donation or otherwise restructure the organ donation system to overcome this crisis? Must we start with bodily exploitation of poor people?


In other news, four transplant recipients were found to have contracted H.I.V. and Hepatitis C from an organ donor, reported by the New York Times here. Imagine waiting (the average) 5 years for a kidney, going through grueling dialysis three times a week, paying $300,000 for a transplant, and then... you get H.I.V. Now, there's a case to make you feel like your life is brilliant in comparison.

Sounds like this was a cadaveric transplant situation, again raising questions about how to improve of the process of executing cadaveric transplants efficiently, safely, and with appropriate information management systems. Gee, there's another aspect to incentivize. I know I'm starting to sound like an economist, but sometimes a little bit of simplistic logic can go a long way.

Hiking with odd-numbered kidneys

Last week was fall break, and I took the opportunity to hop on up to big cities Philadelphia and New York, and spent some time in rural NJ with the fam. On Saturday we went hiking up near the Delaware Water Gap. It's been a while since I've been there, and it is always breathtaking in the fall. We all went hiking up near Millbrook (no longer a real town, now a fake one), and here is the evidence:





As you can see, both donor and recipient are doing very well. N. went back to work a couple of weeks ago. She said she saw her surgeon when she went for a check-up, and he was delighted to see her and check up on his masterfully small incision. M. is trying to avoid boredom at home before going back to school. Hopefully, he'll be back in Savannah by January.

The Fall

You might recognize someone in this short film.

Before and After

Here are some side-by-side shots.

Before:


After:


It's amazing what a working kidney will do!

And for those of you who are curious, but who can't make it over for a visit, this is what their scars were like about a week after the operation.


Notice how small the incision is on N. (left). It is amazing that they were able to do that, given that she had the older style of surgery, open versus laparoscopic. M.'s scar sure looks worse, but it was less painful and less intrusive. He has staples too, which will be removed in about 2 weeks.

Over the River and Through the Woods

"Als goed," as my grandmother (Oma) would say. M. and N. both made it over to visit her, now that she is also out of the hospital.


N. and M. are doing better every day. M. looks healthier than he has in years! His face is no longer swollen, his color is back, and his hair is thicker. It is amazing what a new kidney will do. He is also very fidgety, which could be a side effect of all those steroids or just your run-of-the-mill boredom. He can't "pump up" too much on those steroids, though, because he isn't allowed to lift anything over 15 lbs until he heals. And he has to avoid the sugar, since all the drugs impede his body's ability to process sugar (he is on insulin when it gets too high.). That is not an easy thing when all of our well-meaning visitors keep dropping off sweets as get-well gifts. We do appreciate the thoughts, though!

After a rough first week, N. is also moving around more freely and having some better days. She used to walk only up and down the driveway, but yesterday she made it down the street and around the bend. She has also been sitting up more and spending more time out of bed. Her lifting limit is only 10 lbs.

On Monday they will go back to U. Penn Hospitals to meet with the doctors. It will be M.'s third outpatient visit, and N.'s first. After that, I'll be going back to North Carolina in the evening, since classes start on Tuesday. ...And that's all for now!

6 Days Later

M. and N. are both home in NJ now. M., the recipient, went into Penn Hospitals today to have his first follow-up visit. They said that everything is looking very good so far, except that his blood pressure was high from one of the many drugs he's on and they increased his dose of blood pressure meds. He has to go in to Philadelphia twice a week for the next month or two so that they can monitor him closely. N., the donor, is still in a lot of pain, and she has been sleeping a lot from the pain drugs. M. is walking around quite a bit and seems to have a lot more energy.

It seems like the operation was just yesterday and like the day of the surgery lasted about 6 months. In any case, we are very grateful to make it this far with no major problems.

They're Both Home!

We just got back from the hospital for, we hope, the last time until the scheduled check-ups. M. is now back and walking freely around my aunt's apartment. N. and my parents are heading up to NJ in a few minutes. I've finally had time to download some of my cell phone photos from when they were in the hospital, and they said it is alright to share these.

Here's M. after the surgery, with his kidney pillow:



And here they are on their first walk together around the 4th floor.



Thanks again to all of you for all your support and well wishes through all this. I'll keep this updated as things come up, but probably not every day from this point on. We're really lucky to have all this support and care from all of you, and we will never forget it.

One Home, One To Go

Today was a more eventful day. We took the bus to the hospital this morning, and checked in with N. and M. Both of them were in a bit more pain today because they had stopped the morphine and epidurals. That just made them a bit more easily irritated and uncomfortable. However, N. was completely taken off all the tubes, so she was able to move around more freely. M. still has the catheter in, which was causing him discomfort. They both started on solid foods today. Once they do that and don't need any tubes, they were told they would be ready to go home.

My cousin and his wife came early this morning from Long Branch, NJ, with their 3 year old son. He was bouncing around the place making everyone laugh, including the female medical students outside M.'s room. He loved M.'s sponge that they gave M. for keeping his mouth moist, so explored drinking juice in a new way. It was great to have someone around with so much energy for a change--at least for a little while. We all had lunch together, and then they made their way home.

N. also had some friends visit her in the afternoon, so she was able to hang out with them for a while and complain about the nurse (who was a bit neglectful). N. also managed to finagle a Penn Transplant bag from her post-op transplant coordinator, who took all the stuff out of her own bag and gave it to N. Since N. was now disconnected from all tubes and able to eat solid foods, she was allowed to leave with us tonight. We are staying at my aunt and uncle's condo for now, since the drive can be a bit painful. We picked up her pain medication from the pharmacy and headed out the door with her as she reveled her first wheelchair experience.

M. was a bit bored today, and was trying all sorts of ways to get rid of the discomfort from the catheter. They said they'd take it out tonight at midnight, so he should be feeling better in a few hours. In the meantime, his (excellent) nurse was very amused when he came in and saw M. had moved his whole bed up as high as it would go. M. was exploring all the different positions the bed could go into.

On a side note, Oma (my grandmother) is also out of the hospital now. She came home yesterday and has an in-home caretaker for a few weeks. I spoke with her yesterday, and she is feeling much better and more lucid now.

That's it for tonight! Thanks again for all the support, messages, and comments that you've been sending. It's wonderful.

Almost 48 hours

Not much has changed in the last 24 hours, except that N. and M. have both been sleeping and resting a lot. We were there for about 6 hours yesterday, and it was generally uneventful. M. went to have an ultrasound on his new kidney, so they are checking it out to see how it's doing. He had some intensive immunosuppressants last night for 6 hours to prevent rejection. They also had a very long conversation with someone who explained all the meds he will be taking--a big box of them. Some are for the next 6 months, but others are for the rest of his life.

The first 48 hours are the first major milestone after the surgery, so later today he should surpass that. If all goes well, they are likely to be released on Friday. M. has to be back here on Monday for tests, so we might just stay here for the weekend so that he doesn't do too much driving in his condition.

N. is still recovering nicely. She has been texting and calling us already this morning, so she is probably feeling better today. They took her catheter out this morning and will be taking her epidural out later today, so she's making progress. She called to tell us that she found out what movie they were filming here next to my aunt and uncle's condo--it's The Happening with Mark Wahlberg. No sightings yet, though. In fact, it looks like they want some background actors for the 13th and 14th. Any takers?

I met up with my college friend Gabi last night, who is a 2nd year resident at Temple University hospitals now. She said that N. and M. look "awesome". So, that is further encouragement. It was nice to walk around the Old City with her, where she just bought a condo. However, this morning I woke up with a burst blood vessel next to my eye, which makes it look like someone punched me. I was going to go for another run this morning, but now I'm just going to wear sunglasses. I can say I had a run-in with Marky Mark.

We're off to the hospital again. More later...

A Walk in the Park... Sort of

When we got to the Penn hospital this morning, N. and M. were just about to go for their first stroll together down the halls of 4th floor. M. seems full of energy and has gotten up and down a few times to wander around his plush room. N. walked for the first time when we got here. She's not moving around as much, but she said her pain is not too bad. She was just a little apprehensive about walking around with all those tubes attached to her, but the nursing assistant helped her out and she was off. They say that if all continues to go well, they could be out by Friday.

They're Safe in Their Rooms

Both M. and N. are resting in their rooms tonight after a VERY long day. N. came out first, and she was already quite awake when we first saw her. She was a little pale and her face was a little puffy, but the epidural is locally effective, so she was acting like herself rather quickly. In a few hours, she had more color in her face and she started to have more energy and pitch in her voice. So, all things considered, she is doing quite well.

M. is also doing well. He came out later than N., and he was a bit more groggy at first. He has a lot of morphine (I checked, but he said he wasn't 'flying too high' yet) and was still under the influence of the anesthesia when we first saw him in the recovery room. It was a little scary that he was so much more out-of-it, but his color was really good and they said he was doing well. In fact, they said he was already asking where his jello was.

Unfortunately, he had to stay in recovery for 6 hours because his room wasn't ready, but that turned into a blessing later on when he landed the VIP suite! He has 2 huge windows with amazing views of the city, a couch, two fancy armchairs, and mahogany walls. The nurse said that's where Bill Cosby would stay, or where the (locally) famous Rabbi/Reverend kidney transplant stayed last December. Not bad!

After we saw M., we ventured out to have dinner. It felt great to leave the sterile, over-air-conditioned hospital rooms and eat out on an outdoor patio. We didn't know where to go, but we found a visitors map on the Penn campus and I led everyone around a few blocks to find a row of restaurants that is nearby. Eventually we found them, and we ended up at The White Dog Cafe, a place that my mom recognized because it is her boss's favorite restaurant in Philadelphia. They serve delicious food with a socially conscious approach (and a really fantastic waitress who served us).

It was named after Madame Helena P. Blavatsky, a woman who founded the Theosophical Society. She almost lost her leg to infection, but it healed unexpectedly. She had her white dog sleep across her leg every night. Here's a quote from her on their website:

Behold the truth before you: A clean life, an open mind, a pure heart, an eager intellect, an unveiled spiritual perception, a brotherliness for one's co-disciple, a readiness to give and receive advice and instruction, a courageous endurance of personal injustice, a brave declaration of principles, a valiant defense of those who are unjustly attacked, and a constant eye to the ideal of human progression and perfection - these are the golden stairs up the steps of which the learner may climb to the temple of divine wisdom.

It seems quite amazing, that of all restaurants in the vicinity of the hospital, we'd end up there on this particular day. The food was also amazing.

We wandered back to the hospital. The surgeon who worked on M. came in later (he was still there at 9 pm, the third time he checked in) to check on him, and he said that his new kidney was already producing a lot of urine--far more than they usually see. That's a great sign. He spent a long while answering our questions and said it is a tremendous thing for N. to do for M. because of the alternative (the waiting list, and a cadaver kidney that doesn't last as long).

So far, we have been really lucky to have a great surgical team and some good nurses as well. My aunt has also been doing all that she can with her Jin Shin Jyutsu to work on them as soon as she was permitted to. And, as one of my other Aunt's said, over a thousand people were praying and thinking of us--and I think that's quite accurate. All of these are blessings, and we're all feeling very supported, very relieved, and very tired. Back tomorrow...

Everything Went Well So Far

We just finished speaking with M.'s surgeon, and he is out of surgery now. We spoke with N.'s surgeon earlier, and she is going into her room right now from recovery. Her surgeon came out first, and he said that everything went as well as it possibly could have gone for her. He said he made a very small incision and she had a very healthy kidney. In his words, "She's as beautiful on the inside as she is on the outside." He also said it was a pleasure to meet her, and that she was an angel. Nice surgeon!

M. just finished up, and he had a different surgeon, who is also very nice. He said that everything went smoothly and that he was going to recovery right now, which he would be in for a few hours. He spoke very calmly to us, which was nice to calm my mother, but he also said, "This is only the beginning."

We're off to see N., because she's in her room now, and then we'll wait for M. when they bring him in.

Hugs and Kisses

We got up at 4:30 this morning so that we could make it to the hospital to check in at 5:45. After we waited around for a while to do the check-ins, they sent us upstairs to the ambulatory procedures section. Soon after, they told N. to give us all her valuables and "hugs and kisses," and then she went in to be prepped. She was very nervous, but she managed to sleep well the previous night because they gave her something for the anxiety. Everything seems to be running on schedule, because 2 hours later they came to tell M. to give his "hugs and kisses." My parents were allowed to go in just before both of them went to the OR. N.'s surgery started around 9:10 this morning, and they expect it to finish around 11 (that is now). After that, she will be in the recovery room for a few hours. They said everything has gone smoothly so far. M. hasn't started yet, but he should start very soon. It will probably take another 4 hours for him, before he is in the recovery room.

After M. went in, we all went to the cafe for some breakfast. 2 of my mother's sisters are here too, and my father's sister should be here soon, so there's a nice support system. When you're in the middle of it, it's a battle to stay calm, but you have to try to focus and relax in order to continue on. So far, everyone seems to be handling it pretty well, with no major crises. My grandmother is also in the hospital now (back in NJ), so my mom's third sister is there taking care of her. She should be coming home today or tomorrow. A lot is going on at once.

That's it for now. I'll write again after the surgeon reports back when N. is done. Thank you all for thinking of us.

The City of Brotherly Love

One day to go now... actually, just 14 hours until N.will check in for her surgery tomorrow. We arrived in Philadelphia, "City of Brotherly Love," late last night with M. and N. came this morning with her boyfriend. She's very nervous today, and hasn't eaten much lately, but the doctors gave her something to help her sleep tonight so that she can get as much rest as she can. N. will check in first tomorrow, just after 6am. Her surgery will last about 4 hours. M. is going to go in a little bit later, and they hope to finish around 6 or 7 pm if all goes well. We'll be in the waiting room for quite a while, then. M. seems to be more calm and sleeping/eating normally, so that is a good sign. He is currently in dialysis back in NJ--hopefully his last one for a long time. Our parents are coming back to Philly with him later tonight. I spent most of my afternoon getting some groceries and cooking some dinner. Actually, it's been wonderful to have some time to myself.

That's all the news for today. Let's hope all that brotherly love will really work its wonders over the next few days.

2 Days to Go

Just a quick check-in. Everyone is doing fine, but a bit nervous. My brother M. went to Dorney Park today to enjoy his last day of freedom for a while, and my sister N. went to lunch with some friends. My aunt is here to visit, and she practices Jin Shin Jyutsu for over 2 decades now. She has been giving them both some bodywork sessions for relaxation and balancing. We're also cleaning the house and packing up some food for our time in Philadelphia, where another aunt and uncle have graciously allowed us to stay during all of this. Some old family friends will be coming over this after noon to visit.

M. and I will head down to Philadelphia tonight with another family friend. Tomorrow, M. and N. will have their final blood work done (cross-match), and then M. has to zip back up to NJ for dialysis. Then, he has to go back to Philly after dialysis with my parents to get ready for the surgery the following day. Lot's of driving! So far, though, he seems quite relaxed about the whole thing. My sister is a little more nervous, understandably so. With some bodywork and relaxation breathing, hopefully she'll have it under control soon.

That's it for today. We're grateful for all this support from family and friends. Enjoy the Sunday.

Keeping Score

When I first started this blog, there were just over 69,000 people on the waiting list for a kidney nationwide. By April, that figure had risen to 71,067, and today the figure is up to 72,558 people. (Source: OTPN.) It serves as a reminder that the number is still headed in the wrong direction. At what point does something get done to change this?

Since I don't have any photos up yet of my sister and brother, I thought I'd share one:


3 more days until the transplant... He's very lucky to have a donor.

How to Get Updates

Welcome to all friends and family who are checking this site during the transplant. We are truly very lucky to have your support, and we appreciate all that you have already done for us.

We're not sure if we will be immediately reachable during the surgery or after, and it will probably be good to keep the number of phone calls down during the midst of it. Since we appreciate your concern tremendously, I will be putting updates on this blog so that you can keep up.

You are welcome to check this page for updates as often as you wish, or you can also create a live bookmark in your browser that will tell you when it has been updated, using an RSS feed. This website has a guide for using Live Bookmarks in Firefox browser. If you don't have Firefox browser, I highly recommend installing it because it is better and safer than Internet Explorer (and it is free).

To get started, click on the orange button that looks like a signal is coming out of it. If you have Mozilla Firefox, it will be in the right hand corner of your website address bar. To add a live bookmark to the toolbar (the area below the website address) in your browser, first add it to your regular bookmark folder, and then drag it to your toolbar--simple, eh?

If you have Internet Explorer, you will see the RSS feed button below the address bar. However, I don't know exactly how live bookmarks function in Internet Explorer. You'd have to do a google search.

Thanks again for your support. We are very comforted to know you're there.

4 Days to the Transplant

The transplant is still scheduled for Tuesday, August 7th, although there was a minor change in the preparatory stage. Because my mother and my grandmother have been sick with a cold, they decided to put my brother on antibiotics. That meant that they had to reschedule the final cross-match and blood work for Monday, the day before the surgery. In order to accommodate that, he will have to go to UPenn at 9am for the blood work, then come up to NJ (1.5 hour drive) for dialysis, and then go back to UPenn that evening so that he is in Philly the night before the surgery. So, that means at least 3 hours of driving, and maybe 4.5 if we don't go down Sunday night. All these things are being sorted out.

A cold can be dangerous because of the immune system suppression that my brother will undergo during and after the surgery, and in fact for the rest of his life. It will be most severe during surgery and in the first week or so, and then they will reduce the amount of the drugs to the level that they feel is safe.

In the meantime, the stress and anxiety levels are certainly building this week, which come in waves. It is easy for old tensions to get aired under those conditions, and for minor things to be blown out of proportion. I'll leave it at that. Soon enough, we'll be pre-occupied with the surgery itself, so hopefully the focus will come back to the transplant.

For those of you who haven't seen SiCKO yet, I recommend it. We're lucky to have coverage for the transplant (at least that is what we have been told), although in the future coverage for my brother will become a serious problem. First, there is the cost of the drugs, which are expensive even on insurance (with the actual co-pay amount variable depending on the plan). Then, even if one can maintain coverage, the premiums are likely to skyrocket. But, the worst thing is that once he loses this coverage (which he will eventually because he is currently on as a dependent), it will probably be rather difficult, if not impossible for him to get coverage at all. Without Medicare, the GOVERNMENT run program, it would be a disaster.

But wait, this article from March 2007 says that Medicare coverage for immunosuppressants runs out 36-44 months after transplantation!

Healthcare costs for the majority of transplantation procedures in the USA currently are covered by Medicare, but coverage ends for outpatient immunosuppression medications 36–44 months after transplantation. Two or three immunosuppressive agents typically are included in post-transplant regimens with a total annual cost that can exceed $13 000. This represents a significant financial burden for families no matter if they have adequate health insurance coverage because of co-payment obligations. Evidence suggests that some patients have reduced immunosuppression doses because of an inability to afford their medication, increasing the risk of graft failure. (Pediatric Transplantation, 11:2, March, 2007, pp. 127-131.)

I guess that means that he better get a really good job when he gets out of art school. Or move to another country.

That is, unless we demand a better healthcare system. If you can vote, I urge you to write or call your representatives in the House and Senate about the healthcare crisis in this country. You can even tell them to support H.R. 676, if you feel so inclined. As we're learning, you never know when this crisis will affect you in a very personal, very expensive way.

Getting Ready

Last week my brother and sister both returned to the transplant center to proceed with the tests and consultations that are required before the transplant can occur. Mainly, this involved a few blood tests, meeting one of the surgeons, and learning more about the pre and post-operation experience from the transplant coordinator.

They have transplantation and living donation honed down to a precise schedule. The information that the relevant parties receive is carefully parsed and delivered at specific times so as not to overwhelm the patients nor share information that may not apply to them (nor to waste time, because time is a whole lot of money in health care). For example, in this session they shared with my sister all the possible complications that could arise from the two surgery options, laproscopic and open. Given that the right kidney is the one she will donate, they (and she) decided that the open surgery is probably a better option. For my brother, they shared general information about how he will have to be on anti-rejection medications for the rest of his life. This is the sort of information that they are careful not to discuss earlier in the process, so as to allow the patient to focus on comprehending the transplant as a whole.

Assuming that the tests come out good from this session and the next one, which will be one week prior to the operation, they are both going to proceed to the transplant. The only other things that could get in the way of the August 7th date are illness of either patient or if an emergency cadaver transplant comes up for another patient (those need to be performed immediately to preserve the organ for the recipient).

Our family is currently on vacation in Cape May, NJ, an annual ritual. It is a good thing that they will have the time to relax and revitalize in preparation for the month of August.

As it turns out, August 6-10th is National End Stage Renal Disease Education Week, organized by the American Nephrology Nurses' Association. That means that the transplant will be occurring during a week where politicians will be invited to attend their local transplant centers and dialysis centers and will be given a policy guide for kidney disease awareness and education.

Green Light... Feels Like Yellow

It's official! My sister was approved to donate to my brother. That's the good news. The bad news is that she can't donate her left kidney for medical reasons, so she has to donate her right. That is an important distinction because it means that they can't do the laparoscopic procedure, the newer procedure that entails less pain and recovery time. Instead, they will perform the open technique. This article gives a pretty good comparison of the two (WARNING: they do show photos; not for the weak-of-stomach). Basically, the two procedures are equally safe, but laparoscopic took an average of 16 days to get back to normal activity, and the open surgery took 51 days on average. that's a pretty big difference. So, it is not really the best news. Still, the end result is likely to be the same: a kidney for my brother.

She's still in the running!

My sister went for her second (and last major) medical evaluation yesterday to donate, and so far everything looks good. We should know by next week if she is fit to donate for sure, and then they can schedule the transplant. Nice to have some good news for a change!

Study finds growing prevalence of chronic kidney disease

An study just published in the Journal of the American Medical Association reports that prevalence of Chronic Kidney disease has increased from 14.5% of the population over 20 from 1988-1994 to 16.8% from 1999-2004. Diabetes and cardiovascular disease were particular factors in the growth in Chronic Kidney Disease. There were also racial disparities in prevalence, with African Americans and Mexican Americans more likely than whites to have it.

A rant about waiting

I haven't posted about our family situation in a while, and that is mainly because the people at UPenn Transplant Center are taking their sweet old time to schedule my sister's evaluation visits (my sister is the potential donor). In order to donate a kidney, you have to jump through many hurdles. These hurdles are necessary, of course, but it seems to be taking an inordinately long time for us to pass through this process.

My sister went for the initial blood type and cross match tests in early January. Having passed that stage, she then had her initial medical evaluation in mid-March, during which they do a full day of testing to ensure that she is fit to donate. Another full day of testing is needed, but they didn't schedule that until late April. That means that we won't be able to set a date for the transplant (assuming all goes well), until early May! If she is not a match, then we have to start all over, and my brother is going to have to wait even longer (especially if we can't find another donor). In addition, many of us have been planning for a potential kidney transplant this summer (myself included), and if it doesn't happen, then it is all for naught. I find this delay to be very inconsiderate of my family's, and especially my brother's, needs. Isn't it bad enough that we have to go through all this? Do they have to drag out the donor evaluation for 5 months?

I think a lot of it has to do with the power dynamic between patients and medical professionals, in which the medical professionals have all the knowledge (and thus all the power), and the patient's role is to willingly accept whatever is given to them. In addition, the patients often don't feel empowered to question or critique the advice or information that they are given, even if it is misleading, inadequate, or outright wrong. Now, I appreciate that transplant coordinators and other medical workers are extremely busy, but it is their JOB to make this process go smoother.

They are also dragging their feet on getting my brother on the waiting list. He's not on it yet!! This country is so messed up.

In other news, I found out that I can't donate. That means it will have to be my sister. If not her, then we will have to plead with other family and friends to see if anyone is willing to donate. If no one is, then our last resort is the waiting list, which now has people 71,067 on it and counting. The median waiting time for my brother's blood type from 2001-2002 was 5.5 years, according to the national Organ Procurement and Transplant Network. That's the highest of any blood type, and the waiting list was at about 50,000 people at that time. So, we may need to get used to waiting.

Dangers of anemia drugs

An article in the LA Times reports that the FDA has advised doctors to treat anemia in chronic kidney disease patients less aggressively due to the dangers of the drug. Apparently, the drugs, such as Aranesp and Epogen, have been linked to higher incidences of heart attacks and blood clots in some patient groups.

The National Kidney Foundation updated their guidance in response to these FDA and scientific findings.

Anemia in end-stage renal disease (ESRD) is associated with increased mortality and hospitalization, decreased mental acuity, cardiac enlargement, heart failure, reduced health-related quality of life and impaired rehabilitation. “The work group clearly felt that the evidence is even stronger now that their initial recommendation to choose Hb targets below 13.0 g/dl is very appropriate for CKD patients,” says Dr. Michael Rocco.

The recommendation to keep Hb targets below 13.0 g/dL is based on a review of all-cause mortality and adverse cardiovascular events in clinical trials where patients were assigned to Hb targets exceeding 13.0 g/dL. Evidence showing a trend toward greater number and severity of cardiovascular events in dialysis and non-dialysis patients assigned to Hb targets above13.0 g/dL was rated to be of moderately high quality for showing harm, and of high quality for showing lack of benefit.
(Source: PharmaLive)

On another note, the LA Times article has a very unfortunate name, "Kidney Guidelines Could Hurt Anemia Drug Sales," which speaks to the ways in which kidney disease is seen by many not as a health crisis, but as a profit opportunity. This may be the subject of a future article.

Promise for Stem Cells

The BBC News reports today that scientists have successfuly grown a heart valve from stem cells. The hope is that they can ultimately grow new organs for people in need of transplants that do not require anti-rejection drugs because it would be grown from the person's own tissue. While it looks like it will be quite a few more years until it is ready for prime time, it is very promising for addressing the long-term organ transplant crisis.

Potential Treatment for Polycystic Kidney Disease

Traditional Chinese Medicines are reported by Yale scientiste to be effective at controlling polycystic kidney disease in mice, says this article in Science Daily. Polycystic kidney disease is the result of a mutation that leads to the lack of regulation of cell growth in the kidneys, leading to the proliferation of cysts. It is pretty gross to see photos of it, and it enlarges the kidneys tremendously. So, this potential therapy that may help reduce the growth and size of cysts is great news for those who have polycystic kidney disease. My brother doesn't have this type of kidney disease.

New Legislation to Facilitate Transplants

According to this yahoo news/AP story, the House unanimously approved new legislation that clarifies that paired transplants are legal. A paired transplant occurs when a willing donor for a friend or family member is not a match for them, but they are a match with someone else (and the same for a willing donor for that person). In other words, they do a trade (i.e. "I'll donate to your brother if you donate to my sister"). It's called the "Charlie W. Norwood Living Organ Donation Act," for the late Representative who passed away recently and who was waiting for a lung transplant. It is amazing to me how having a member of Congress affected by an issue personally can be so influential for national policy. Too bad Congress is still so overwhelmingly white, wealthy and male!! That said, I'm thankful that they're paying attention to the transplant crisis and living donation. Thanks to Bharat for passing this article on to me!

An uphill battle

A study in Pediatric Transplantation reveals that young transplant recipients who lose their health insurance following a kidney transplant are more likely to forgo their immunosuppressants and, therefore, lose their transplanted organ. The drugs that patients with transplants need to take can cost up to $13,000 per year, so without insurance, many patients have difficulty paying for the drugs (and even with insurance, the co-payments are very high). Young patients, such a teenagers and those in their early twenties, are more likely to be uninsured than older patients, so this problem is particularly acute.

It also becomes particularly difficult for younger patients who initially had insurance to maintain it consistently after a transplant because they get kicked off as dependents and face exorbitant rates.

Time to move to Europe yet?

The Other Face of Fistulas

Until recently, my only acquaintance with the word "fistula" was obstetric fistula, a gruesome condition which has become a rather high-profile public health problem, particularly in Africa, affecting women with poor access to health care. A harsh social stigma is associated with obstetric fistula because it is often mistaken for an STD and can lead to incontinence, the inability to have children, unpleasant smells, infection, and paralysis.

But, apparently there's more to fistulas than that. In fact, there appear to be many types, affecting all kinds of organs. And, in end stage chronic renal failure patients, like my brother, a cimino fistula, or arteriovenous fistula, is intentionally created for hemodialysis. This is an outpatient procedure in which the surgical team creates a connection between an artery and a vein in the arm. It works because it increases the blood flow such that the dialysis can work to filter the blood.

M is going in to get a cimino fistula put in on Wednesday. Right now the dialysis access is through a catheter near his heart, which has more serious risks of infection than the cimino fistula in the forearm. He needs to wait at least 6 more weeks to use it.

How interesting, though, that what can be a source of such great suffering in one part of the body (and one part of the world), can save someone's life in another. It is another story about the contradictory anatomy, and the uneven geography, of medical science.

Transplant Disequilibriums

As it turns out, the world of transplantation is rife with inequality. According to this article in Nature, people in the United States are 25 times more likely to get a kidney transplant than people in Japan. In Spain, which leads the world in closing the gap between organ supply and demand, patients in need of kidneys are 75 times more likely to get a transplant than their Japanese counterparts.

In addition, the likelihood for getting a transplant also varies by age, race, and income.

Factors associated with higher rates of transplantation included younger age, nonblack race, less comorbidity, fewer years on dialysis, higher income, and higher education levels.

And so, it appears that some people's kidneys are more worth replacing than others. Actually, the United States organ allocation system also has some significant regional disparties, according to another article.

The current system has led to regional disparities in organ allocation; for example, the median waiting time for a lung transplant is more than 600 days; however, the waiting times range from less than 200 days in some of the southeastern states to more than 800 days in Michigan.

Once again, the organ allocation system in Spain is presented as an exemplary model for more equitable distribution. Of course, Spain also has a nationalized health care system, which helps.

Why is Spain so successful? The answer lies, in part, in the way that the organ allocation system is structured, such that transplant managers are very involved in organ procurement and less separated from the process than they are in the US. But most importantly, the Spanish system is based upon the idea of presumed consent, or an opt-out rather than opt-in system. That means that individuals and families of potential donors are considered to have given consent unless they (or their family) state otherwise (rather than the other way around, like it is in the United States). Here is another article on the topic, which is very informative (Gundle, Kenneth, Cambridge Quarterly of Healthcare Ethics (2005), 14: 113-118 Cambridge University Press).

Given that the waiting list for organs in the US is now over 94,000 (and counting), and that it has tripled in the past 10 years, maybe it is time to consider these alternative systems more seriously.

On the Infectious Qualities of Disease

My mom said it the other day--that sometimes she feels as if her kidneys were failing and not my brother's kidneys. I wonder if there is a word for this vicarious feeling. I have felt it too--a slight tenderness in my mid-to-lower back during all the haste and confusion the week he was in the hospital. I felt my blood pressure go up, and my mental state go down. Of course, it isn't happening to me. It is happening to him, even though he often acts like it is not. And while I try to calm my mother down, I often feel as if my own panic level is getting too high. It's like a strangely intertwined system that we all function in these days, with one emotion, one feeling, bouncing from one of us to the other and back. Soon, you lose sight of who is holding it all together, and who needs to be rescued.

Not an Every Day Choice

Given that the national kidney transplant waiting list has 69,000+ people on it with an average wait time of 3-4 years, it is highly advantageous for my brother to receive a transplant from a living donor. My mother has hypertension, so she is not a candidate. My father has the wrong blood type and had an acute kidney infection when he was younger, so he is out. That leaves my sister and I.

As it turns out, we are both compatible by blood. We both have compatible blood types, tissue types, and passed the cross-match. My brother is a very lucky young man. Now, as the transplant coordinator said, it is up to us to decide who will go forward for the in-depth kidney evaluation. Up to us.

How does one make such a decision? What are the logical criteria for deciding who will have their stomach cut open? Oddly enough, it has come down to logistical matters--my sister lives closer and has a job that allows her time off, while I am in a PhD program in North Carolina and would lose some income and research opportunities. So, there you have it. Signed, and sealed.

Yet, given that this is such a serious procedure, it seems wrong to make our decision based on something as mundane and practical as location or money. There should be some larger reason for the choice, or some medical justification. (Of course, she will have to pass the full medical evaluation to go through with it, but it seems likely that she will.) There should be some clear-cut explanation for why one of us should wake up with nightmares about scalpels, while the other sleeps through the night. There should be some force that dictates from the heavens why one of us is destined to give this gift of life and health to our brother, in need. Is there any way for it not to be unfair? Is there any way for this not to feel so wrong in so many ways?

No, afraid not.

What happened to his kidneys?

This is the question that no one seems to know the answer to. Kidneys, it turns out, are complicated organs, and one could also argue that they are understudied. M's doctors, the nephrology team, says it could have been an infection that prompted the auto-immune response, when the body's immune system attacks itself. One doctor described it as being similar to diabetes, except that the attack is of the kidneys instead of the pancreas.


(photo courtesy of the NASA tomography website)

All we know is that, around the time when M was diagnosed a month ago, his kidneys were half the size of normal kidneys. They had been failing, most likely, for a long time. When he checked into the hospital his hemoglobin levels were extremely low, creatinine levels were very high, and he was very anemic. The anemia explains why his skin had the yellow tone to it for so long, and he was always tired.

Here are some kidney facts that most people don't know:

• When the kidneys fail, they both fail together. One never loses just one kidney (except to transplantation, of course).

• Kidneys are not only responsible for clearing waste from the blood stream and producing urine, they also play a key role in regulating blood pressure.

• When kidneys are transplanted, they do not remove the old ones--they place the new one beneath the old ones.

• Humans can survive with one kidney as if they had two. In fact, I've read that transplant donors tend to live longer, on average, because they are more healthy than the population as a whole--having passed an extensive medical evaluation in order to donate.

• To be a compatible donor, one must not only have the same blood type, but also match at least 3 of 6 tissue antigens--the more the better, of course. In addition, the blood samples are combined in a cross-match process to see if one person's blood causes the other to die.

A Somber Debut

On December 20th, 2006, our family found out that my brother, age 22, has End Stage, Chronic Kidney Disease. He didn't have any pre-existing conditions, and his symptoms were relatively minor--tiredness, pale skin (symptoms of anemia). All of the sudden, we were thrust into a new world--the world of dialysis, nephrologists, transplant coordinators, dieticians, social workers, disability counselors, surgeons, insurance providers, and so on. This world is bigger than any of us had ever imagined.

This blog is an attempt to gather all the new information that I've encountered, to process all that has been going on, and to share with others who may be experiencing (or have experienced) something similar. Comments are welcome.