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 only be exacerbated by going to a children's hospital beyond the expected age.

However, all changes are stressful, even good ones. Transition is the change of an entire healthcare system (not just a doctor) for a young person with all the usual problems of adolescence and an organ transplant on top of it. Also, for obvious reasons, this transition may be especially hard for cognitively delayed young adults. The issues in transition for transplant patients are so extensive that the entire December 2006 issue of Progress in Transplantation (the official journal of the North American Transplant Coordinators Organization or NATCO) is devoted to the topic. The articles there present a more vivid and thorough description than I ever could, discussing transition from different perspectives (patient, nurse, physician), of patients with various conditions, and different models of achieving successful care. One recurring theme seems to be a lack of social connection in an adult center, the sense of being "the only one" who has a transplant at such a young age, while at the pediatric center there were "lots" of other young people. This isn't logically true, since the number of young adults with transplants is greater by head count than the number of children. However, spreading young adults out among the greater number of adult transplant centers probably fosters this perception. I wonder if specific "young adult transplant centers" is something any programs would consider. It may eliminate the convenience factor of multiple centers, but people just coming out of pediatric programs are used to traveling. The many challenges of transition could probably be addressed in a more intensive manner on the adult side if more than a few patients were at that stage. Finally, the social isolation would be less with a critical mass of fellow patients in the same situation.

Finally, aside from the mechanics of transitioning health care, there is the simple experience of growing up and being a young person with a transplant. The cliches of irresponsibility, confusion, isolation, and defiance in adolescents may be a bit overstated, but it's still a rough time, and having a transplant certainly doesn't make it easier or make one immune to these factors. For my part, I didn't encounter any peer pressure to neglect my medical care, but I can't say that I encountered a tremendous amount of support either. Your friends won't tease you into binge drinking, but they definitely won't stop because it's a bad idea for you! This leaves an incredible amount of pressure on the individual young transplant patient, and I can absolutely agree that growing up with a transplant is very hard to do. But I can also say that it gets better. Dorms become someone else's living space and apartments become yours, frat parties get replaced by dinner parties, one-night stands give way to relationships, and summer and part-time jobs turn into careers. All of the latter are much easier to manage and fit in with as a transplant patient, and while growing up with a transplant is challenging, the transplant makes a full life possible.

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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 Sunshine

The 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 to those who come to camp. One-on-one support is available to children who need it, yet at the same time the activities are designed to be as full and as active as any camp, letting kids enjoy themselves. Whether Camp Sunshine gets the best volunteers or whether Camp Sunshine brings out the best in the volunteers that come, it's a wonderful relationship for both sides. Camp Sunshine is supported by an incredible array of donors, and many of the donors take a personal interest in the camp, not only sending money but volunteering time and other services. The permanent staff is made up of approximately a dozen people. Far from being "back office" staff, they fully participate in every camp session. Of course, they also make the place run day-to-day and develop the program year-to-year. Even though the existing support is incredible, more donors and volunteers are always welcome!

Camp Sunshine has held dedicated sessions for solid organ transplant since 2003 and renal disease since 2001. In 2007, the transplant session will be from June 8 - June 12 and the renal session will be from July 29 - August 3. Families of patients with kidney transplants are welcome in either session, and evenly represented in both. For more information about Camp Sunshine, visit their web site or call them at (207) 655-3800. Whatever your plans are for the summer, make it one to remember.

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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 more...it 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..."

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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 Data

The 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 timepoints...it'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 it seem pretty fair.

Volume Data

The SRTR provides great statistical measures, but how many transplants a center does is almost as important. Is an organ transplant a rare event for the hospital, an occasional case, or an every-other-day thing? Beyond the total number, many patients are curious if the center has experience with their specific situation. For example, does a center do a significant number of pediatric transplants? Have they done many transplants in patients with a certain diagnosis? Do they perform rarer procedures such as multiple organ transplants or living donor transplants for organs other than the kidney?

All of this information can be found from the OPTN (Organ Procurement and Transplantation Network) Data Reports. These data are updated more frequently and go into more depth than the SRTR data, in exchange for not providing analysis or comparison, just pure numbers. Specific transplant centers can be looked up through a menu similar to the SRTR site (using a map by state), and information about the donors, recipients, and waiting list at that center is all available. To compare transplant centers around the country for certain variables (say, the number of pediatric kidney transplants performed in the past two years), the Build Advanced Report feature is especially useful. As long as a report row is set to "Transplant Center", you can compare every transplant center in the country on one table.

Beyond The Numbers

Much of the "quality" of a transplant center can't be captured in numbers. The qualification of the staff, the facilities, the dedication of the institution to transplantation, and the personability and attitude of the program towards its patients are vital to every patient's experience. Even news reports of substandard centers almost always discuss the personal aspects of the center that contributed to the problems. Unfortunately, this information is hard to capture. Investigative reporting is one method, but tends to cover only especially good or especially bad cases. The Internet can come in useful here as well--many people write blogs about their transplant experience, providing very personal insights into the program where they're treated. The blogroll on this page identifies specific centers, so is a place to start to hear about a program from the personal side.

I'm wondering if profiles of individual transplant centers would be useful here at Transplant Headquarters, maybe a "Center of the Month" feature. I could describe a center's history, the backgrounds of the staff, any niches in transplantation that they're especially noted for, and any good or bad news reports. I've been a patient at three or four transplant centers, and had family members or close friends at another three or four, so my personal experience is a drop in the bucket of the number of centers out there. The key would be the comments section, where I hope those with firsthand experience could share it for the benefit of those at the beginning of their journey in transplantation. Good or bad, identified or anonymous, it could be a helpful way to learn more about centers--things that aren't captured in the numbers, that may not be good or bad enough to capture media attention, but may shape an individual's experience, or just be good to know. Let me know what you think...

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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 Dysfunction

Regardless 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.

1. Acute rejection
   Even 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.
   
2. Chronic rejection
   In 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.
   
3. Infection
   Almost 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.
   
4. Recurrent disease
   Something 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.
   
5. Vascular issues
   Connecting 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.
   
6. Drainage issues
   Every transplanted organ except the heart has some form of "drainage" or a non-vascular connection. For kidney transplants, it's the ureter. For pancreas transplants, it's the pancreatic duct. For liver transplants, it's the bile duct. For lung transplants, it's the airway. These are often the last "connection" made in a transplant operation, and possibly the least often considered, but they shouldn't be forgotten.

Three Wishes For The Transplant Genie

Like many people, I've spent too much time thinking about what I'd wish for if a genie came out of a magic lamp and granted me three wishes. But unlike most people, in my dreams it's the transplant genie, and I've thought of three things that would improve the prospects of everyone needing organ transplants.

1. Highly effective treatment for chronic rejection
   Chronic rejection exists for every transplanted organ, and there are few or no effective treatments for it under most circumstances. The inevitability and inexorability of chronic rejection are what keep transplantation limited to being a treatment for end-stage organ failure rather than a cure.
   
2. A method to eliminate the need for immunosuppression
   Immunosuppression is necessary in almost all transplants, and carries the universal risks of infection and cancer, in addition to specific side effects of each drug available. The complications of immunosuppression are often like a separate disease, which leads many to describe transplantation as "trading one disease for another." Without the need for immunosuppression, this other disease could be cured as well.
   
3. An unlimited source of replacement organs
   Finally, As long as I'm dreaming, we may as well get rid of that pesky donor shortage. The need for donated human organs and the relatively short supply of them limits transplantation to a fraction of those who could benefit from it. While increasing organ donation is essential, many estimate that even utilizing all eligible organs will leave a shortfall. Xenotransplantation (using organs from animals), genetically engineering animals to make them more compatible with humans, tissue engineering, and mechanical artificial organs are all strategies and research areas that may make this wish come true.

The 10 most important things to do in the late posttransplantation period

1. Reduce immunosuppression whenever possible.
   
2. Adopt a strategy to prevent noncompliance.
   
3. Monitor renal function closely.
   
4. Perform biopsy early and often to detect late acute rejection.
   
5. Aggressively treat hyperlipidemia.
   
6. Aggressively treat hypertension.
   
7. Do everything possible to encourage patients to quit smoking.
   
8. Screen for breast, cervical, prostate, colorectal, and skin cancer.
   
9. Immunize against influenza and pneumococcal pneumonia.
   
10. Consider prophylaxis with aspirin, calcium, and hormone replacement therapy.

This list comes from the third edition of the Handbook of Kidney Transplantation by Gabriel Danovitch, which I've found to be one of the most useful books written in transplantation. The fourth edition has updated information but lost the "top 10" format. I'll leave more description of the items on this list to the book.

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