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!)

Read More...

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.

Read More...

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.

Read More...

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 only...so 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.

Read More...

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

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.

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.

Read More...

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.

Read More...

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.

Read More...