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Preview: Transplant Headquarters

Transplant Headquarters

Updated: 2017-07-09T05:49:09.144-05:00


In the past four weeks, I...


  • Scrubbed in on kidney transplants, liver transplants, living donor operations, and organ procurements
  • Rounded on a kidney transplant service 13 years to the day after receiving one myself 
  • Got in way over my head in the OR 
  • Told a patient that the lump in their neck was probably cancerous 
  • Plowed through a 1,000 page pediatric hepatology textbook 
  • Lived in New York for the first time and realized why it's one of a kind (in a good way!)
  • Worked with people from 10 different countries 
  • Got to tell two teenagers "Here's my deal: I've been there" and that having an organ transplant may be rough, but you can still live your dreams
(reposted from my Facebook page, so a few hundred of my "friends" have heard this one already!)(image)

Adult Kidney Donors for Pediatric Recipients


The story of Amelia Rivera is generating a firestorm of coverage, but it's also showing that there is such a thing as bad publicity (and not just for Children's Hospital of Philadelphia).  In addition to the distress that this whole conflict must be causing the Rivera family, the reporting on the story is sometimes spreading misconceptions about pediatric kidney transplantation and organ donation.  In particular, Arthur Caplan, a bioethicist at the University of Pennsylvania, is quoted as saying "Most adults can't donate an organ, because it won't fit...You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."  This point has been propagated, seemingly without any fact-checking, by NPR, Time, Fox News, CBS News, and others.

The preferred donors for kidney transplants in young children are adults, not other children.  Kidneys from pediatric donors can have more technical complications, simply because the blood vessels are smaller and more likely to clot.  Also, kidney function doesn't mature to adult levels in the first two years of life, so the function of a kidney from a young child may not work as well in a transplant setting.  Pediatric kidneys from deceased donors are used for transplantation, but they're typically transplanted as a pair to an adult, rather than individually to another child.  

The idea of using kidneys from children for transplants in other children sounds like common sense, and it was a standard practice in the 1980s, but the complications were quickly discovered and adult kidneys became the preferred donated organs.  This change in practice was followed by a change in UNOS policy, which resulted in significantly better outcomes for young children with kidney transplants.  While there have been a few instances of people under age 18 being living kidney donors, the youngest has been a 7 year old identical twin, and there's no indication that any of these donors were sought for size reasons.  Finally, 46 children under the age of 5 received a kidney transplant from a parent in 2010 (source: OPTN Data Reports) so the Riveras' idea that they could be kidney donors for their child is backed by a mainstream practice.

Maybe I shouldn't be surprised that the ideas being spread about pediatric kidney transplants are 20 years out of date, since the contraindication of "mental retardation" should be equally out of date.  But I do wish the coverage of pediatric kidney transplants was better than the news that's out there.  By "better" I mean that hundreds/thousands of parents have donated kidneys to their children, that pediatric kidney transplants are done in a huge variety of circumstances, and that most people working in the field are dedicated to all of their patients and show it every day.

Amelia Rivera


Amelia (Mia) Rivera is a young girl with Wolf-Hirschhorn syndrome who had an appointment at the Children's Hospital of Philadelphia last week and met their transplant team.  The understatement of the century would be to say that it didn't go well!  An organ transplant evaluation denied due to developmental disabilities.  Again.  This was one of the first stories on this blog, and I don't really have much more to say now than I did then.  Misty Cargill's case was five years ago and Sandra Jensen's was 17 years ago, so it seems like this question in the transplant community should have been resolved long before Mia Rivera was even born.As an aside, Mia's mother mentions a list of contraindications that includes hepatitis C and HIV.  Given that there are entire book chapters written about kidney transplantation in the hepatitis C positive patient, and a multicenter clinical trial of kidney and liver transplants in HIV patients has just completed enrollment, it's a little frightening to think that the transplant practices at CHOP could be so outdated.  The old days in organ transplantation really weren't good, so I hope that CHOP's practices are either very different than described or will change very soon.The stories from before were adults who were otherwise in reasonable health, which made the denials based on intellectual ability even more stark.  The syndrome that Mia has is more complicated, and her mother's blog posts detail her other medical problems, so there may be medical reasons why she wouldn't do well with a kidney transplant that I can speculate on.  The downside is that I don't have any specific knowledge of this particular case; the upside is that I'm not a fluent speaker of PR-ese.  If her seizure disorder would be exacerbated by tacrolimus to the point where she couldn't take immunosuppressants, or if her heart disease or other problems make a major operation too risky, then a kidney transplant may bring more harm than benefit to her overall health.  Maybe that's what the transplant team meant to say, but it certainly wasn't what the family heard.  Effective communication of complicated information is beyond essential for transplant teams and their patients, so even this best case scenario doesn't reflect well on organ transplantation at CHOP.Anyway, in the era of social media, the backlash is in full force.  CHOP is getting slammed on their Facebook page, and not doing so well on Twitter either.  I'm not sure how the story will continue for Mia, but it's definitely going to be a different experience than those who've had to deal with this before.My personal thoughts?  First, it's wrong.  There are a lot of ways to say it, but decisions about organ transplants shouldn't be based on intellectual ability, societal worth, or perceived quality of life.  Second, it's disappointing.  Part of the disappointment is from the long history of denying organ transplants to people with intellectual disabilities, part of it is from the prestige of CHOP in general, and part of it is from having met transplant surgeons and nephrologists from CHOP at the ATC and ASN meetings.  It's a sad day to be a kidney transplant recipient when patients and families still have to deal with these obstacles, and it's a sad day to be considering a career in transplantation when people in the field are showing such unacceptable values.[...]

Transplant Immunosuppression on Step 1


Like any workaholic second-year medical student, I'm spending part of the holiday break studying for Step 1 of the boards (the standardized Big Test after the first two years of medical school).  But since it is supposed to be a vacation, I felt justified in studying a more familiar topic, so transplant immunosuppression it is.

Wow.  Everyone says that the textbooks and the exams are ten years behind the times, but it's really striking in a field that changes as fast as transplantation.  Also, the testable facts are based on FDA labeling and the approved indications, which are quite a bit more limited than clinical practice, especially for transplants that are done less commonly.  So, what I've "learned" is:
  • Cyclosporine, azathioprine, and OKT3 are commonly used immunosuppressants.
  • Cyclosporine is used for kidney, liver, and heart transplants; tacrolimus is used for kidney and liver transplants; everything else is used for kidney transplants lung transplants must not need any immunosuppression at all!
  • Daclizumab (Zenapax) is used as an antibody against the IL-2 receptor, even though it's no longer manufactured in the US since Simulect (basiliximab) is now preferred.
  • Thymoglobulin, Campath (alemtuzumab), and belatacept don't exist (or rather, knowing them won't help me one bit on the test :-/).
Anyway, pretty obvious defense mechanisms in play with this post!  There's more to worry about than the anachronisms in the transplant immunosuppression section, like how much else there is to study, how out of date it may be (without me knowing it), and how much I'll have to unlearn or get a clue about before actually being able to take care of patients.(image)

Book Review: Intestinal Failure: Diagnosis, Management, and Transplantation


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Intestinal transplantation is probably the most esoteric area of organ transplantation, so learning anything about it can be nearly impossible.  The occasional article or meeting isn't nearly enough to get an overall picture of the field, so I was glad to find a book about it called Intestinal Failure: Diagnosis, Management and Transplantation(image) .

For transplantation, this book has it all.  Surgery, immunosuppression, rejection, infections, evaluation...all the usual topics in organ transplantation are included.  In particular, it discusses the different transplant options--isolated intestinal transplant, liver-intestine transplant, and multivisceral transplant--and describes the differences and indications for each.  Piecing this information together from individual articles isn't nearly as useful, since most of them report on one particular procedure at one center with the conclusion of "look how well it worked!"  There could be more detail on some general aspects of transplantation, such as immunology, but there are many other sources for that information, so this book stays focused on its niche and gives plenty of information to understand its topic.

Even though most people reading about intestinal transplantation have an extensive background (either professionally or personally), the book begins with general information about the gastrointestinal system and intestinal failure, which is great.  If I had to name a weakness, it would be the information on parenteral nutrition, which is pretty limited given how important it is in intestinal failure, and doesn't provide nearly enough detail to understand a PN prescription.  Of course, prescribing PN is a specialty in itself for physicians and for dietitians, so it's understandable if it can't be covered here.  Intestinal and multivisceral transplantation is only an interest for me, not something I deal with personally or professionally, so it's great to find a book that explains it well.(image)

Nephrology - The Best Transplant Field?


I'm in Philadelphia at the American Society for Nephrology Kidney Week.  For me, it's a busy four days of meetings for their medical student program, the ASN Workforce Committee, and the Nephcure Foundation.  Of course, as a medical student attending a specialty meeting, the ubiquitous question is "What do you want to go into?"  I've been telling people something along the lines of "I want to go into transplantation but not sure about what specialty, since there are a lot of possibilities."  The obvious response, it seems, is that the best field for someone interested in transplant is nephrology!  They make some good points:
  • The kidney is the most commonly transplanted solid organ, by a pretty wide margin.  There are just more kidney transplants out there.
  • Related to the first point, it's feasible to practice transplant nephrology or kidney transplant surgery full time, while specializing in other organs usually requires more non-transplant-related work.
  • The immunology of transplant rejection has been best studied in the kidney, both in the pioneering work and in newer research on donor specific antibodies and antibody mediated rejection.
  • Renal disease affects many recipients of nonrenal solid organ transplants, due to some immunosuppressant drugs and damage during the serious illness of organ failure.  Luckily, the hearts, lungs, livers, etc. of transplant patients don't tend to be as uniquely harmed.
Anyway, nephrology deserves at least a few days of intense exploration, so tomorrow at 6:30 AM it begins again.(image)

St. Louis Children's Hospital


I spent the past couple weeks shadowing/observing at St. Louis Children's Hospital. I'm still not at all clear on the best practices for blogging about clinical experiences, so this post will be pretty short and far from a complete recap. Let's just say that they have the largest pediatric heart and lung transplant programs in the country, and that may have been a motivation for my visit.

For what it's worth, I was really impressed. The physicians there shared a realistic understanding of what transplants can and cannot do.  At the same time, they were innovative in trying new things, in the hope that transplantation can do better.  Families were very engaged and involved, which is a credit to both the families and the staff--the relationship definitely needs effort on both sides.  Finally, they were extremely welcoming when a medical student e-mailed from the middle of nowhere saying "I have an interest in transplantation--can I visit and learn about what you do?"

There's a mural outside the entrance to the Cardiac ICU, and the message made me smile every time I saw it.

Thank you, St. Louis.(image)



I'm not a guru of videos by any means, but vacations from school are typically a time to vegetate in front of a screen.  Of course, for this blog, it's all about transplant videos.

From the touching (the story of a young girl's heart transplant at UCLA)...

frameborder="0" height="225" src="" width="400"> the fascinating (a living donor liver transplant operation at Children's Hospital of Pittsburgh)...

allowfullscreen="" frameborder="0" height="349" src="" width="425"> the catchy (organ donor awareness from the Department of Health and Human Services).

allowfullscreen="" frameborder="0" height="349" src="" width="560">


Book Review: Breathless


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The history of lung transplantation is inexorably linked to the University of Toronto in the 1980s and the surgeons and medical team there at that time. The first lung transplant was performed in Mississippi in 1967, and patients with end-stage lung disease started receiving successful heart-lung transplants at Stanford and Pittsburgh in the early 1980s, but Toronto developed the procedures of single and double lung transplants as they're done today. The names of Drs. Joel Cooper, Alec Patterson, and Griff Pearson are mentioned most as the pioneers, but another member of this team, Dr. Thomas Todd, has documented the history of lung transplantation firsthand in his book Breathless: A Transplant Surgeon's Journal(image) .
Breathless is almost a Midnight's Children(image) of lung transplantation; when the first lung transplant in Toronto is performed, Dr. Todd is a senior resident still in training, and when the field is mature, Dr. Todd is retiring. In between, he takes on the roles of doctor to many lung transplant patients, donor surgeon traveling the country to procure lungs, a position at another hospital, and finally the director of the thoracic surgery department in Toronto. Compared to many books by physicians, he doesn't focus extensively on the medical details of his experience, but does a great job telling the stories of the hospital environment, the politics, and the patients. Some of the stories are inspiring (the first patient's recovery), some are frustrating (departure of the pioneering surgeons), and some are funny (a patient's question of "Can we have sex?").
One downside of the book is that the author's role was somewhat outside the historical limelight, so it's sometimes challenging to connect the stories he tells with the history of lung transplants as it's usually reported. He also takes some diversions into the non-transplant work of a general thoracic surgery service, but I found these to be interesting as well. Overall, this book provides a very interesting account of the history of lung transplantation and how it became the field it is today.

Pediatric vs. Adult Transplants


Pediatric transplantation has been a focus of this blog, mainly because I'm especially interested in the stories and unique issues of children who need organ transplants. Many aspects of transplantation are similar between children and adults, but there are some key differences. Kidney Percent pediatric: 5% Indications in adults DiabetesHypertensionGlomerulonephritis Indications in children Renal dysplasiaPosterior urethral valveFocal segmental glomerulosclerosis Differences in surgical approach In adults, a kidney transplant is placed in the pelvis and attached to the blood vessels going to the leg (usually the external iliac vessels). For children between 10 kg and 20 kg, the kidney is placed in the abdomen and attached to the main blood vessels in the body (aorta and inferior vena cava). For children under 10 kg, dialysis is generally preferred to a kidney transplant. Young children actually do better with adult kidneys rather than kidneys from other children. Liver Percent pediatric: 12% Indications in adults Hepatitis C infectionAlcoholic cirrhosisPrimary biliary cirrhosis (PBC) and primary sclerosing cholangitis (PSC) Indications in children Biliary atresiaMetabolic diseasesFulminant hepatic failure Differences in surgical approach Children can often receive the left lateral lobe of an adult liver, either from a deceased donor (split liver transplant) or a living donor (living donor liver transplant). The left lateral lobe is relatively easier to identify and divide than the right lateral lobe (relatively easier--both are very challenging operations!), and children were the first recipients of partial liver transplants. Children can also receive a whole organ liver transplant from another child. Heart Percent pediatric: 13% Indications in adults Ischemic cardiomyopathyIdiopathic cardiomyopathy Indications in children Cardiomyopathy (particularly dilated cardiomyopathy)Congenital heart disease (particularly hypoplastic left heart syndrome) Differences in surgical approach Patients receiving heart transplants for congenital heart diseases (usually children, sometimes adults) often need a longer segment of donor aorta with the transplant. The native aorta may have been part of the original problem and reconstructed as a "neoaorta" as part of the Norwood operation, so the aorta may also need replaced at the time the heart needs replaced. Lung Percent pediatric: 4% Indications in adults COPD (chronic obstructive pulmonary disease)Cystic fibrosisIdiopathic pulmonary fibrosis Indications in children Cystic fibrosisPulmonary hypertensionCongenital lung malformations Differences in surgical approach The younger and smaller a lung transplant patient is, the more likely they are to receive a double lung transplant and need cardiopulmonary (heart-lung) bypass for the operation. However, the operation is generally the same in children and adults. Small bowel Percent pediatric: 57% Indications in adults Mesenteric ischemiaCrohn's diseaseIntestinal tumors (desmoid and carcinoid) Indications in children GastroschisisNecrotizing enterocolitis (NEC)Malrotation and midgut volvulus Differences in surgical approach One of the challenges with intestinal transplants is that the donor usually needs to be of a smaller body size than the recipient. Since children needing intestinal transplants are small already (because of their intestinal failure and...because they're children), finding a smaller donor than the recipient can be especially challenging.[...]

Underlying Diseases


Organ transplants don't often "just happen." For a vital organ to lose so much function that it needs to be replaced, some disease has progressed to the point that it's causing serious problems. While the underlying cause is sometimes unknown (a single-digit percentage of cases), some underlying diseases are pretty frequent in the transplant world. Despite the commonalities of the transplant experience between patients, specific diseases tend to share an even more common experience. Also, many of these diseases have effects, stories, and communities that go beyond the subset that are transplant-specific. To highlight some of the places where transplant patients come from, this post is a summary of four specific underlying diseases.DiabetesDiabetes mellitus is what happens when the body has a lack of insulin activity, either because insulin can't be produced (Type 1 diabetes) or it can't be used (Type 2 diabetes). It's an extremely common disease, affecting 20.8 million Americans in 2005. Diabetes doesn't just affect sugar metabolism, but the use of carbohydrates, fats, and proteins. It can affect almost every organ system, including kidneys, peripheral nerves, eyes, and blood vessels of all types. A number of treatments are available, from medications of all types to injected insulin to insulin pumps to better regulate blood glucose levels to transplants.Diabetes has a strong interplay with transplantation. It isn't just the indication for essentially all pancreas transplants; diabetic nephropathy is also the #1 disease causing the need for kidney transplants as well. Beyond those who have a transplant for diabetes, many transplant patients have diabetes as an additional disease. Also, diabetes can be a side effect of immunosuppression after transplantation, which is categorized as post-transplant diabetes mellitus (PTDM). Finally, type 1 diabetes is an autoimmune disease, and both diabetes and chronic rejection of transplants affect blood vessels, so basic research in diabetes and transplantation play off each other to lead to new advances for both groups.Any disease that is so common is bound to have a large community on the Internet and in medicine in general. The American Diabetes Association is the center of this community, supporting everything from educational resources to research funding and advocacy. Unfortunately, there aren't too many blogs about diabetes or kidney or pancreas transplants related to diabetes. There are a couple in the "Adult Kidney & Pancreas Transplant Blogs" section, and other great blogs about diabetes in general such as Diabetes Mine and Six Until Me. Still, beyond the blogs or broadcasted stories, diabetes is an important part of transplantation.Biliary AtresiaBiliary atresia is the most common underlying disease for pediatric liver transplants, responsible for about half of all pediatric cases and a much greater proportion of those in the youngest age groups. Biliary atresia is a rare and poorly understood disease. The number of new cases each year number in the hundreds, and the cause is not congenital, not genetic, not contagious (though possibly infectious), and...not known. The ultimate problem is that bile ducts "drop off" and don't develop fully enough to drain bile from the liver. No organ does well when it's not drained, and the liver is no exception, which leads many biliary atresia patients into cholestatic liver failure. The stories between patients are shockingly similar: initially assuming it was typical neonatal jaundice, undergoing a Kasai portoenterostomy to attempt to restore bile flow, and children going through the transplant experience at a very young age, with parents and families thrown into this world with them. Even though the condition is extremely rare, and everyone's l[...]

Donation After Cardiac Death (DCD)


The very first experimental organ transplants came from donors who had recently died, whose hearts had stopped beating. These were superceded by living organ donations between twins and other relatives for the first "successful" kidney transplants, but "dead donors" would ultimately make up the bulk of organs donated. The earliest and most logical definition of "dead" was supremely intuitive--those whose heartbeats and breathing had stopped. Over the course of several years, brain death came into the picture as a new definition of death, and the 1968 Harvard Ad Hoc Committee on Brain Death formalized its definition and criteria. Brain death generated some controversy, but has become accepted as a medical and legal definition of death, and brain-dead patients became the pool of candidates for organ donation. However, some in the transplant profession had not forgotten the early donors, and in the mid-to-late 1990s the practice of recovering organs from donors whose hearts had stopped was resurrected as "donation after cardiac death" or DCD.The principles of each are simple. Brain death is when the brainstem has been damaged beyond repair, when someone cannot breathe or maintain essential life functions without artificial support. Brain death can be diagnosed and declared by standard criteria, and after brain death is declared, death is declared as well and life support is removed. This time period is also the window for possible organ donation. DCD is for donors who do not meet brain death criteria but still have no meaningful chance of survival. In these cases, mechanical support is withdrawn as it commonly is for many people in these circumstances. The only difference from the usual practice is that organs are recovered after death for transplantation.UNOSIn the decades between the early and the recent use of DCD, the biggest change in the US transplant system was the development of UNOS. Its history is another very long post, but the end result is that UNOS allocates organs for transplant, sets up the rules and systems by which organs are allocated, and sets conditions that member hospitals have to follow to legally get organs for transplant. UNOS is responsible for current DCD practices, and it also holds responsibility for an extremely long waiting list and a huge number of transplant centers. Recently, faced with criticism over its effectiveness, incoming UNOS President Sue McDiarmid, a pediatric liver transplant specialist at UCLA, set the amazing goal of eliminating death on the waiting list of children. No child would die waiting for a transplant...this is a result that could definitely show UNOS's effectiveness to be beyond question. It would obviously require an increase in organ donations (in addition to tweaking current practices) and this increase could logically come from DCD donation.UNOS set forth with proposals to increase DCD donations, including requiring all hospitals to have a DCD policy. This effort was not met with unbridled enthusiasm, but instead with a lot of resistance. The report of a recent meeting of the UNOS Pediatric Committee details the resistance, which is especially strong for pediatric donors. This is ironic given that the push was partly designed to help children needing transplants, but it is also very understandable given the medical uncertainty of prognosis in children and the pure tragedy of a child's death. To understand and work through this concern, UNOS recently held a Summit on Pediatric Organ Donation and Transplantation, including both pediatric transplant professionals and pediatric intensivists (ICU physicians). A report from this summit is not available, but one fact that has been brought up is that pediatric intensivists are often in the unique position of caring for both p[...]

Beth Israel Deaconess Medical Center


Like every transplant patient, the Beth Israel Deaconess Medical Center (BIDMC) has been through a lot, but sweeping changes have made the transplant program stronger than ever. Kidney transplantation began at the Beth Israel Hospital in 1973 under the direction of Dr. Anthony Monaco, and liver transplantation began at the New England Deaconess Medical Center in 1983 under the direction of Dr. Roger Jenkins. In 1996, amid drastic changes in the US health care system, the hospitals decided to merge. The merger led to a serious culture clash, prompting the entire liver transplant program to relocate to the Lahey Clinic. Bad turned to worse, as the hospital re-established a liver transplant program with grand plans: pediatric liver transplantation, living donor liver transplantation, and a "model program" for the rest of the world. One year later, the program was suspended in the wake of five deaths, which represented 25% of the transplants performed. The drama of the merger as a whole is the subject of the book Code Green, which thoroughly documents the events of the merger, mostly from the perspective of the nursing staff and with a seeming bias towards the Beth Israel side. The book ends with the recruitment of Paul Levy as CEO of BIDMC.ResurrectionPaul Levy saved BIDMC, using every viable tactic imaginable. He offered joltingly honest assessments of the hospital's situation to the staff. He created a partnership with the Boston Red Sox. He even started a blog. However, development of clinical programs would rely on new clinical leadership as well as strong administrative support. Dr. Josef Fischer had recently joined the institution as Chairman of Surgery, and he in turn recruited top doctors to reinvigorate major divisions. Dr. Douglas Hanto was selected as the new chief of transplantation. He proceeded to recruit additional staff members and lead the existing ones, and together they set to the task of restoring the transplant program. All of the people in the multidisciplinary team, from surgeons to coordinators to administrators, were co-located to the same office and clinic area, fostering both patient convenience and close personal interactions among the staff across traditional boundaries. To ensure safe and thorough clinical care, detailed clinical pathways were established and a transplant-specific electronic medical record (EMR) system was implemented. The services of the transplant center were also expanded to include: a Dialysis Access Center to ensure essential care for patients with end-stage renal disease (often awaiting transplantation), a hepatobiliary surgery program for liver diseases that may not require transplantation but still require major surgery, and a strong relationship with the Joslin Diabetes Center, which includes a kidney-pancreas transplant clinic at Joslin as well as a program in the evolving procedure of islet transplantation. These changes have been a success, and today Beth Israel Deaconess has a balanced and busy program in kidney, liver, and pancreas transplantation with solid outcomes. They have also used their clinical and research strengths to create educational programs for future transplant specialists, including a transplant nephrology fellowship that is the only one in Massachusetts accredited by the American Society of Transplantation and a transplant surgery fellowship that is the only one in all of New England accredited by the American Society of Transplant Surgeons to fully qualify surgeons to perform kidney, liver, and pancreas transplants (other fellowships in the area are limited to one or two of these organs). Dr. Hanto summarized the efforts and results of the transplant program: "What has occurred has required real team work, hard work, commit[...]

About the Center Profiles


After the general post on how to look up a transplant center, I've decided to include profiles about specific centers on this blog. The purpose of these profiles is to describe transplant centers beyond the easily-obtainable information. They won't be simple links to the information described in the earlier post, but will include information (on the Internet and otherwise) that show what a center has done, what they're "up to" currently, and anything that is truly unique about one center versus most or all others. I'm thinking of doing approximately one a month, though this frequency may change depending on how the blog evolves and how busy a news day it is in the rest of the transplant world.

Centers will be chosen to be profiled with roughly the following priority:

  1. Request of a transplant center to be included
  2. An inquiry from a transplant patient or candidate, or a caregiver of one, about a specific center
  3. Nomination by a previously-profiled center
  4. A center that has been in the news, has a vivid history, or just flat-out intrigues me

I'll be writing these profiles myself, so any opinions expressed will be mine. I will attempt to contact the director of the transplant program being profiled and ask them to actively participate in two ways: first, to bring key features of their program to my attention, and second, to check what's written for factual accuracy. However, they won't be writing the profile and will not be able to censor unflattering-but-accurate content.

Comments will be open, and I hope that this will be the more interesting portion of the post. Anyone who has information or an opinion on a specific center is welcome to comment. Anonymous comments are fine. That said, "flaming" or personal attacks won't be permitted and will be deleted. Also, if you have a concern or question about a specific clinical situation, please contact the transplant center directly rather than post a comment.

Let's see how this goes...


Growing Up With A Transplant


Transplants in children make up a small but significant number of organ transplants. Even though they represent only about 8% of transplants, their differences generate a lot of attention. The conditions causing the need for transplant in children are different, mostly congenital diseases. End-stage organ disease can not only threaten the lives of children but also impair their development, so different criteria for children are built into organ allocation systems, and often a higher priority. Finally, many of the "best" stories and the most positive public images of transplantation come from the times when a successful organ transplant is performed in a child. Even better, more and more children are growing up with transplants and becoming adults. This process is great overall, even a miracle, but comes with unique pitfalls as well.The overall experience of growing up with a transplant was discussed at the American Society of Transplant Surgeons (ASTS) 6th Annual Winter Symposium in a talk by Dr. John Magee, and summarized the experience perfectly with the title "Growing Up Is Hard To Do." Dr. Magee's research shows that regardless of the age at transplant (infancy to adolescence) there is a substantial increase in graft loss during the teenage and young adult years. That is, a transplant in a 3-year-old has a drop in success 15 years later (when the recipient is about 18) and a transplant in a 13-year-old has a similar drop at 5 years (when the recipient is about the same age). The causes can't be directly inferred from the SRTR data, but could include growth (and a transplant "not growing with you"), differences in adult health care, or noncompliance. A recent study in the journal Pediatric Transplantation has received a great deal of press attention, and describes how adolescents often lose health insurance. It can happen by exceeding time limits on Medicare eligibility, exceeding lifetime maximums, or losing coverage through parents that comes from being dependents. In the transplant setting, losing health insurance can make medications unaffordable and medication noncompliance more frequent. The transition to adulthood clearly seems to have many practical challenges that transplant patients may feel even more acutely.In the medical world, the Society for Adolescent Medicine's 1993 position statement defines transition as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems," and they provide more updated guidelines in their 2003 position paper. Transitioning to adult transplant care is beneficial in many ways. From the practical standpoint, there are: a larger number of transplant centers (so presumably more convenient access to care), more resources, staff, research, and programs devoted to adult transplantation, greater specialization within adult transplant (for instance, far more adult nephrologists practice exclusively transplant nephrology, while few if any pediatric nephrologists can restrict their practice in this way, so they "do transplant too" in addition to other areas of interest),familiarity with general health care needs (such as sexuality and reproduction) that are more significant for adults than for children.Beyond the practical benefits, adult health care approach the patient as more autonomous than pediatric health care does, which considers every decision to be primarily or exclusively the parents' call. Finally, "normal" young adults (those without chronic illnesses) are seeing adult practitioners rather than pediatric ones, so the sense that young people with transplants have of being "different" can on[...]

Transplant Camps


With the first weekend of spring upon us, and the last snow of the season melting (I hope!), thoughts quickly turn to summer. For many kids, summer camp is a key activity for the time of year and a great memory beyond. Swimming, arts and crafts, sports, playground time, meals, and campfires are just some of the experiences to look forward to, offsets to activities in school or daily life. Children with transplants have opportunities to enjoy summer camp as well, and they need all of these activities, medical supervision to keep the time healthy, and a way to meet other children who have been through similar experiences.Transplant Living, the UNOS-sponsored patient education site, offers a listing of summer camps. Many of the camps are affiliated with a disease-specific program (e.g., a renal camp, a heart camp). They're usually supported through organizations such as branches of the National Kidney Foundation and individual hospitals. Several include children who are pre-transplant as well as post-transplant, and those who have related conditions but may not have a transplant in their future. These camps typically rely on generous financial donations for funding, and medical personnel donate time and effort to design and supervise camp activities. Since these experiences may be hard to find for transplanted children, and can be so beneficial for them (and so much fun!), I'm grateful to anyone who supports these camps and the needs of the children who attend.Camp SunshineThe one camp that I have firsthand experience with, however, goes beyond the typical "transplant camp" to provide a truly extraordinary experience for children with organ transplants and their entire families. Camp Sunshine is a family retreat for children with a variety of chronic illnesses. The camp is located in Casco, Maine, is open to children of all ages (from birth to age 18), from anywhere in the world, and is free of charge to families.Camp Sunshine is the only "family camp" to my knowledge (versus a "kid's camp") and this has several ripple effects. First, there is no lower age limit--infants and toddlers who have received transplants can come and enjoy age-specific experiences in the nursery and Tot Lot (most transplant camps have a minimum age of approximately 8 years old). Siblings are also welcome, so they aren't left out of the camp experience. Parents have the opportunity to meet other parents and families with similar stories--for parents, part of the day features discussion and support groups led by a social worker and the other part of the day is for camp activities, including the legendary Super Duper Blooper Games. Since families are together, parents can supervise their own children, and can choose to spend time as a family rather than being herded through activities. Finally, for the entire family, the ability to take a trip that is designed for their needs, medically feasible, and safe and comfortable is something that isn't too easy to find.The people that support Camp Sunshine are simply extraordinary. In all honesty, when I first considered volunteering seven years ago, this was a greater concern than the families (who I knew would be great). Would other volunteers be coming out of obligation and not care? Would they be excessively pitying? Would they be too young and inexperienced to contribute meaningfully? Would there be an excessive and dictatorial staff? Would the camp be chronically short on funding and have facilities and services that reflected that? NONE OF THE ABOVE! The volunteer staff is plentiful, with a range of ages and experiences. Every volunteer I've met has been dedicated to providing an amazing experience t[...]

Little Things


Everyone from Mother Teresa to Sherlock Holmes to Little Debbie has something to say about "the little things" and there's no shortage of little things in transplantation either.I'm writing this post while watching a documentary about a multiple organ transplant, part of the "Surgery Saved My Life" series on the Discovery Channel. Like most portrayals of medicine on TV, the narration, background music, and scene setup exude overdramatization, but real life has an intensity that television could never capture. They describe the complexity of the procedure in every way possible, but the explanation that most caught my attention was that the surgeons would "...perform virtually every abdominal procedure devised, back to back, and as fast as they can."Yikes. Every abdominal procedure...every last one, huh? Even though some steps of the multivisceral transplant operation are the more challenging procedures in medicine (such as removing the liver or pancreas), the real challenge seems to be how extensive and all-encompassing such an operation is. The same seems to hold true for the medical aspects of transplantation (versus the surgical). For example, all transplant patients are at an increased risk of skin cancer from chronic immunosuppression. Renal transplant patients have usually faced bone disease with renal failure, and may still have bone disease after transplantation. Finally, non-renal transplant patients have a risk of developing renal failure that ranges from 7-21%. These are just a few examples, and volumes have been written on medical complications of transplantation. Looking at the whole picture, it sure feels like every last problem devised can show up in one way or another, and that they come on you as fast as they can.The climax of the surgical story is when the surgeon steps out to talk to the patient's mother. This happened after the organs were reperfused (had a blood supply restored), but the narrator brings forth a caveat: "A long series of minor procedures lies ahead."The minor procedures of that day probably include surgical adjustments such as creating a stoma and placing a feeding tube, but the "minor procedures" (surgical or not) will continue a lot longer. For me, this week's features were blood tests and a bone density scan. Not an excessive list, but the previous week had a few and next week will have a few adds up. Of course, the burdens of post-transplant care and this slew of tests is a lot less than that faced by patients on dialysis, and doesn't even compare to those who are critically ill and awaiting a heart transplant or liver transplant. Transplant patients' lives are generally in the realm of chronic illness. Jon Carroll recently wrote about the boring but unending nature of being diabetic, and entire blogs have been written about chronic illness.Finally, in the last scene of the show, the narrator makes the only drastic understatement of the program: "Gretchen's medical odyssey is not quite over..."[...]

How To Look Up A Transplant Center


Many people seem to be finding this blog while looking for the statistics and reputation of specific transplant centers, or transplantation overall (with the exception of the diverse and dedicated crowd at Grand Rounds). In the spirit of "giving the people what they want", this week's post is the short course on some ways to find this kind of information on the Internet.A few notes at the outset. First, there's no single best transplant center (like all rankings, the various players jiggle around in position from year to year), but there are better and worse ones. Second, like almost all information on the Internet, information about transplant centers is scattered about in many forms, none of them perfect. Finally, this is limited to information in the United States. Transplantation is a worldwide enterprise, but I wanted to keep the length reasonable, and I'm not as familiar with other countries' systems.The first place to start is the transplant center's web site. These are invariably "puff pieces" (I've never seen a center with a "weaknesses" section on their site!) but they do show who has a transplant program, and give plenty of practical and objective information like contact information, names and background of staff members, and usually some of their guidelines and practices. UNOS (United Network for Organ Sharing) and TRIO (Transplant Recipients International Organization) maintain lists of transplant centers' web sites. Like all links, these can be outdated or nonspecific (e.g., linking to the hospital's main page), but they are a place to start. However, there are sources that allow you to compare transplant centers more objectively.Outcome DataThe Scientific Registry of Transplant Recipients (SRTR) is an invaluable resource for statistics in transplantation. It provides summaries for the entire country in an annual report (under the National Transplant Statistics tab)--how many people were added to the waiting list, how many transplants occured, and what current success rates are in terms of patient and graft survival for various's all here.The two most important measures for patients to compare transplant centers are (1) how long the wait is and (2) how well patients do after transplant, and this information is thoroughly described and analyzed by the SRTR. Waiting times vary both by center and by the local organ procurement organization (OPO), and there are several tables of information on this (Tables 1 through 6 in the center reports and Tables 1 through 7 in the OPO reports). Post-transplant success has fewer measures, which makes it easier to comprehend. Graft survival (Table 10) and patient survival (Table 11) are reported for each center, with permutations for different time frames, adult vs. pediatric transplants, and living vs. deceased donors. All this good stuff is available under Center and OPO-Specific Reports. From this link, you can compare every transplant center in the country on a specific measure (such as patient survival) or dig into a specific center and get all the information on it. It's updated every six months.The most intelligent aspect of the data from the SRTR is that it compares each center's data to "expected" results based on national averages adjusted for characteristics of the center's patients. Therefore, if a center reports information about their patients that makes success less likely, the expected values are lower. If their results are lower still, it's not likely to be due to the patient mix. Of course, people can debate the validity of the methods, but the thoroughness and uniformity of it make i[...]

Numbered Lists


To shuffle things around here, this week's post is a few shorter lists on the medical and scientific aspects of transplantation rather than a single long essay on the social and political aspects. The first two are original to the best of my knowledge, so please use a citation or reference when using them.Six Basic Causes of Transplant Organ DysfunctionRegardless of the organ, the fastest way to panic for anyone with a transplant, and the most important problem in transplant medicine, is a sign that the transplanted organ isn't functioning properly. A specific list of all the possible causes would be long and vary by organ, but the problems can be broken down into six general categories that applies across all organs.Acute rejectionEven though acute rejection rates are decreasing, acute rejection is still the "classic" problem in organ transplantation, and without immunosuppression, or if left unchecked, it will still destroy almost any transplant (the exceptions are fascinating, but few and far between). So, even if it's not all that common anymore, it still has to be first on the list.Chronic rejectionIn kidney transplantation, it's called chronic allograft nephropathy. In liver transplantation, it's called vanishing bile duct syndrome. In heart transplantation, it's called accelerated graft coronary artery disease. In lung transplantation, it's called bronchiolitis obliterans syndrome. Regardless of the organ, it is marked by "obliteration of lumens" of tubes in the transplanted organ, both blood vessels and other tubes. There are very few treatments for most cases of chronic rejection, and it's one of the most feared long-term problems in transplantation, so it has a permanent spot on the worry list.InfectionAlmost every patient must take immunosuppressive medications to prevent the immune system from recognizing the transplanted organ as foreign and attacking it (rejection). Unfortunately, since the immune system is responsible for handling infections, suppressing it limits this ability, and transplant patients are susceptible to infections, Specifically, unusual infections are more likely, and the transplanted organ can either be a source of infection from the donor, or more susceptible to infections than usual given all the manipulation it's experienced. Recently, infections exceeded rejection as a cause for hospitalization post-transplant.Recurrent diseaseSomething happened to cause the need for an organ transplant, and in many cases, that condition may still be in play after transplantation. Autoimmune diseases of any organ can recur--for some diseases and organs this is extremely common. Metabolic diseases (such as diabetes) may still be present and unaffected by the transplant. Finally, damage to organs other than the one being transplanted may affect the transplant, such as bladder damage related to kidney diseases and transplants or heart damage related to lung diseases and transplants.Vascular issuesConnecting blood vessels is the first step in every transplant operation, and I've heard transplant surgery described as "vascular surgery with immunology" (immunology accounting for most of this list!). Blood vessels that have been operated on can develop clots, stenosis (narrowing), or leaks and bleeding early or late after transplants. This category may be a bit more "elementary" than the others, but can be just as damaging if not more so. It's easy to check for, and often can be fixed, so shouldn't be forgotten.Drainage issuesEvery transplanted organ except the heart has some form of "drainage" or a non-vascular connection. F[...]

Kidney Allocation and Age


UNOS held a public forum on proposed changes to the kidney allocation system on February 8, 2007, in Dallas. For those who didn't attend, the slides presented at the meeting are available, as well as a more understandable but narrowly-focused summary from the PKD Foundation. Approximately 200 people attended in person and an additional 150 attended by web conference or phone, and they had a lot to talk about.The proposed change that has been focused on the most is incorporating age into the allocation system. To be specific, the changes would incorporate the age of adult candidates as one factor in prioritizing the allocation of standard criteria donor (SCD) kidneys. All of those qualifiers are important, since reading most accounts could lead people to believe:that older age doesn't currently play a factor in candidacy for transplantation (it does, in evaluating and deciding to list patients for transplant), that younger age isn't currently used in the allocation system (it is, in that children are given extra "points" in the current system), that all kidneys available will be allocated through this system (they won't, since expanded criteria donor [ECD] kidneys will be allocated purely on waiting time), or that age will be the only factor used in allocation (it won't be, it will be one of many factors).The current system strives to be as fair as possible. Fairness coexists with utility, which depends on "matching" donors and recipients into combinations most likely to have the best outcomes. Over the years, the importance of "matching" based on HLA antigens has decreased, but the logic of matching based on age is still solid. A 25-year-old kidney in a 75-year-old patient is likely to outlive its recipient, still having years of potential function when the recipient dies of other causes. The current system has no way to account for this form of "matching." Kidneys from donors over the age of 60 are considered expanded criteria donor (ECD) kidneys, as well as those from donors over the age of 50 with less-than-ideal conditions. While these kidneys may be less likely to last for decades than standard critera donor (SCD) kidneys, older recipients are also often less likely to live as long, which lessens the chance that donated kidneys will outlive their recipients. ECD kidneys will still be allocated primarily by waiting time, so older recipients will still be able to receive kidneys based on their waiting time, kidneys that could likely work well for them.Most of the news coverage of this story seems to be from Chicago, starting with an article in the Chicago Tribune the morning after the public forum. The article is clear and reasonably balanced, though a bit opposed. Two patients with polycystic kidney disease were interviewed for the article--Jack Fassnacht wondering if the new proposal is "suggesting the life of a 30-something has more value than the life of a 50-something" and Norma Knowles asking ""Who's to say an older person's five years of life are any less important than a younger person's nine years?" Both of these are impossible questions to answer, and the new proposal is NOT attempting to answer them. It measures each additional year of adult life as equal, whether your 20th, 50th, or 80th, basing its priority on whether one is likely to see that year. Some are wondering whether UNOS is valuing one person's 30th year over another's 70th year, which is dicey, but the converse of valuing one person's 70th year over another's 30th year is even less justifiable.These issues were more recently tackled in[...]

Politicians and Transplantation


Politics is as much a part of transplantation as it is of any other part of life, transplant is arguably the most politicized and regulated field of medicine, and politicians have played many roles in the history of transplantation.The most obvious role is that of transplant recipient. Like thousands of their constituents, several politicians have faced the seriousness of end-stage organ failure and experienced organ transplantation firsthand. The first politician to receive a transplant (that I know of) was Kansas City Mayor John Reardon, who received a heart transplant in February 1987. The next prominent example was Pennsylvania Governor Robert Casey, who received a heart-liver transplant for amyloidosis in June 1993. More recently, Texas state Senator Mario Gallegos (D, Houston) received a liver transplant last month for alcoholic cirrhosis. Questions of preferential treatment were raised when both of these politicians received their transplants surprisingly soon after being listed, but no evidence of favoritism was found, though Governor Casey's case led to changes in the allocation rules for those waiting for multiple lifesaving organs. Representative Charles Norwood (R, GA) unfortunately died of cancer this past week, having received a single lung transplant for idiopathic pulmonary fibrosis in October 2004. In Canada, Quebec finance minister Michel Audet received a heart transplant in 1992 and retired a few days ago on Valentine's Day. There may be more transplant recipients who are politicians that I've missed (feel free to leave comments), and the overall number isn't huge given the number of politicians. But at least some of those making laws and running the government do so with the perspective of a transplant patient.Fewer transplant professionals have been politicians, since doing so means choosing to change careers, an entirely different decision than choosing to treat a serious illness. The only one I'm aware of is Senator Bill Frist (R, TN) who was a heart and heart-lung transplant surgeon at Vanderbilt University Medical Center before being elected to the Senate in 1994, and intends to return to medical practice since his term ended in 2006.Finally, even without firsthand experience, many politicians have played major roles in the development of transplantation in the United States. Transplantation greatly expanded in the early 1980s with the development of cyclosporine--kidney transplant success rates went from 50% to 80-90% at one year, and liver, heart, and lung transplants first reached viable success rates and wide application in these years. Increased success and increased application led to dramatically increased demand, which until that time had been met by smaller, local systems with few uniform processes and little sharing across geographical areas. In response to a number of pleas for donor organs, many directed to him, President Ronald Reagan [1][2][3][4][5] directed Congress to devise a system for organ allocation in the United States, which took shape in the National Organ Transplant Act of 1984, written by then-Congressman Al Gore. The development and implementation of the Act reflected tension between the Republican administration and the Democratic congress, ultimately resulting in the government not taking control of organ allocation, but assigning the responsibility to a private contractor: UNOS.By the late 1990s, transplantation had expanded futher and the disparities in organ allocation between different regions of the country had become even wid[...]

Transplant Pathology


I had another biopsy last weekend. It's become a familiar routine of 6 AM departures, four hours bedrest, and waiting for a phone call in the evening with results. The details vary by organ, by institution, and by patient, but biopsies are a part of life for almost everyone involved in transplantation.Biopsy samples, of course, go to pathology, and the development of transplant pathology is one of the more interesting spinoffs in the history of transplants and of pathology. Rejection was identified in early laboratory research in transplantation, and characterizing rejection pathologically led to several important insights into transplantation. In this way, pathology played a role similar to pharmacology, as the identification and development of immunosuppressant drugs helped show exactly what was needed for transplantation to be a success. However, from the pathology standpoint, transplantation isn't a "natural" condition like cancer--it has similarities to autoimmunity, but pathologists had to identify and diagnose rejection and other problems with transplanted organs only after surgeons and other clinicians began transplanting organs. Even if the role of pathologists wasn't thought of initially, they willingly came along for the ride, and certainly got to work in developing the field.Transplant pathology is fairly standardized, and much of this standardization started from the Banff conferences. These began as meetings to reach a consensus on what characterized kidney transplant rejection, later weaving in the NIH-CCTT (Cooperative Clinical Trials in Transplantation) guidelines, and expanding to describe rejection of the pancreas and liver. The ISHLT (International Society of Heart and Lung Transplantation) took a similar lead in characterizing heart and lung transplant rejection. Having these standards is invaluable for the transplant world to communicate clearly about rejection (diagnosing and treating it) when many individuals may focus more on an organ or organ system rather than transplantation itself. Many of these standards, and all sorts of other information, can be found at the TPIS (Transplant Pathology Internet Services) site.It hasn't stopped there, though. One purpose of making the early systems was to have a standard way to describe rejection for clinical studies, but thanks to these clinical studies, serious acute rejection and graft loss aren't nearly as common as it once was. So pathologists have worked on developing new ways of characterizing rejection and organ function to serve as "surrogate endpoints" to identify more subtle issues in transplant function. These have successively incorporated the latest techniques in biology, such as cytokine profiles, DNA microarrays, and genomics and proteomics. They have also helped describe problems such as acute humoral rejection (by C4d staining) and infections (such as BK virus) that wouldn't be nearly as well-understood without pathology input.My biopsy turned out fine--recovered quickly, got the results, no huge surprises, a few changes in treatment, but still some unanswered questions. For now, transplant pathology can recede in my mind, but I'm sure the field will continue to develop and will be there the next time I need them.[...]

USC Liver Transplant


Hearing that a transplant program has unexpectedly low graft or patient survival rates brings the assumption that the program's staff must be unqualified or inexperienced (not doing enough), or uncaring or incompetent (not trying hard enough). But what if the problem is actually that they're doing too much and trying too hard?At the end of the year, the Los Angeles Times reported on the unexpectedly high death rate of patients in the liver transplant program at the University of Southern California (USC). They told the stories of several individual patients who were extremely sick, who would likely die with or without a liver transplant, who may have received marginal donor organs, but ultimately were transplanted at USC when other programs had turned them down. The available data support the notion that USC has a very high-risk patient population: the "expected" survival rate for USC was lower than the national average, and USC patients had a higher risk of dying before a transplant, not just afterwards. There were also systems problems within the program, as detailed both by the LA Times and the USC Daily Trojan student newspaper--these should be corrected, and plans to do so are in place. But the USC dilemma generates the more vexing question of who is an appropriate transplant candidate and who is "too sick" to receive a treatment designed for "end-stage" presumably fatal disease.Much of the response to this story was defensive, with letters to the editor in defense of both the field of liver transplantation and the USC program in particular. For a field founded on treating otherwise untreatable diseases, and that has made untreatable diseases treatable, this defense is perfectly understandable. Also, the line between acceptable and untenable transplant candidates is a moving target that has generally become more permissive over time. Personally, I can't imagine the despair of being "too sick to transplant" and can fully understand why patients would seek out any program that would offer them a chance, and why a program would strive to give them that chance.Yet the fact remains that the outcomes of patients treated at USC are poor by national standards, and as insightfully stated by Dr. David Mulligan, chairman of transplant surgery at Mayo Clinic Hospital in Phoenix: "They're pushing it as hard as they can and having the results that you'd expect to see." Beyond the "push" for individual patients, though, is a "push" on much larger systems: The staff is devoting its considerable training and talents to some patients who stand little chance of benefitting from them. USC is dedicating resources to a program that may ultimately harm it more than help it as an institution. Organizations such as OneLegacy (the organ procurement organization serving Southern California) and UNOS are spending their time and energy matching donors and recipients who may have very little chance of success. Medicare, Medicaid, or private insurers are paying for an expensive treatment that has less chance of succeeding than it may under more normal circumstances. The follow-up to this story indicates that, however good the intentions of USC's previous practices, they are changing. It will take time to see if these changes improve their survival rates and repair their reputation. But the patients who are too sick to transplant are still out there, and someday treating them successfully is a challenge to the field of transplantation and medicine in general[...]

Transplant Rebirthdays


My kidney transplant was seven years ago today. "Rebirthday" seems to be the most common term the transplant world has for this day, but I've heard "anniversary" and all sorts of permutations that aren't really words I can comprehend ("transplantversary" for one). Transplant patients I know have marked it with recognition of their donors (living or deceased), special activities or indulgences, and even organ-shaped cakes (these tend to be the same ones who have names for their transplanted organ...a bit over the top for those out of early childhood).

For my part, I haven't usually thought of my transplant anniversary as a particularly joyous occasion. At the time, it was an incredibly rough week, and the improvement afterwards wasn't nearly as immediate or dramatic as advertised. Since that time, as each year passes, I'm reminded that the chance of a transplanted organ lasting gets lower. For those interested in numbers, there are good statistics available on current graft and patient survival, projected survival of kidney transplants done recently, and long-term survival of children with end-stage renal disease.

I recently heard a saying about parenting that "the days are long but the years are short" and living with an organ transplant seems to follow the same rule. Taking medications, getting lab tests, and monitoring our health make for long days (and clinic appointments at most places can make for VERY long days!). But whether average graft survival is 10, 20, or even 30 years, it's far less than the 80 year life expectancy most people expect. Each year seems especially short, and they go by fast.

What do I do for my transplant anniversary? Over the years, I've spent this day at everything from a belated holiday party to a cancelled doctor's appointment, and only last year was there a cake involved. I've tried to forget (not possible since I have a fairly good memory for all anniversary days), thought about doing something especially memorable, and graciously accepted well wishes from January 24 to February 2 (the caring is there, but some people's memory for dates is less durable).

In the end, living with a transplant is a day-to-day process, and regardless of the predictions from statistics, no one can predict the future. But having a transplant is a fairly monumental event and change in life, so for that reason alone I'd say that every transplant patient deserves a special day. Enjoy!

New Allocation Policies


Allocating organs has always been the most contentious issue in the field of transplantation. Which patient should get an organ from the limited supply available has been regulated, debated, modeled, and revisited for as long as transplants have been performed. Historically, fairly simple "point" or "status" systems were used, relying heavily on the judgement of individual physicians and centers and on waiting time. As part of the 2000 Final Rule, the OPTN was charged with creating systems that would rely more heavily on measurable laboratory criteria and place a priority on transplanting the sickest patients first.The first "modern" allocation system was the MELD (Model for End-Stage Liver Disease) and PELD (Pediatric End-Stage Liver Disease) systems for allocating livers. These are fairly simple systems based on a few variables, with scores that are designed to roughly correlate with the chance of death from liver failure. These systems did provide a degree of objectivity to liver allocation, but their implementation was complicated by the fact that patients with some diseases (such as metabolic diseases and liver cancer) may have a need for transplantation that is not reflected by the variables in MELD/PELD, which are based on cirrhosis. Revisions of the MELD system for patients with hepatocellular carcinoma and a fairly high proportion of "exceptions" from regional review boards (RRBs) for pediatric candidates have been needed, so it's still unclear how fully the system has reached its goals.A new lung allocation system, based on a simply-named but mathematically-complicated Lung Allocation Score (LAS) went into effect in May 2005. The LAS attempts to predict the one-year survival of candidates without a transplant and with a transplant. Those that have the greatest difference between these scores will presumably have the greatest benefit, and therefore get the greatest priority. The LAS has dozens of variables, which vary based on the disease type, and appears to encompass everything important in organ allocation. Ironically, the most elaborate system currently in place replaces what was previously the most simple--lungs used to be allocated based solely on waiting time, a pure waiting list. Despite its complexity, or maybe because of it, the LAS appears to be very successful, having reduced waiting times and deaths on the waiting list. The New York Times recently chronicled the success of the new system and the failure of the old one.Kidneys are next. The waiting list for kidney transplantation is by far the largest, accounting for the most patients, the longest waiting times, and the greatest absolute number of deaths while waiting. Each of these is a unique issue for the kidney transplant community, bringing up several questions: Should older patients get kidneys from younger donors? How should "marginal" kidneys be used to the greatest benefit? In a system where the average waiting time approaches four or five years, does a system that gives one person a kidney within one or two years mean that someone else will have to wait nine or ten years?How should racial and ethnic disparities be limited? These issues were covered in a New Year's Day front page story in the San Francisco Chronicle, and in a much more personal documentary by the Los Angeles Times.It appears that a new kidney allocation system will resemble the lung system, calculating a "Net Lifetime Survival Bene[...]