Finn and Patient-Centered Guides editor Linda Lamb envisioned Organ Transplants as a guide to the specialized needs of transplant recipients. It complements the donor perspective of The Nicholas Effect, Reg Green's memoir of his son's death from a drive-by shooting in Italy and of Green family's decision to donate their son's organs.

Why should a transplant patient need a book? Aren't there teams of doctors, surgeons, social workers, and financial counselors to answer any questions a patient might have?

The fact is that success in getting exactly what you need from the healthcare system depends more and more on being well-prepared. This is particularly true in organ transplantation, where the gateway--getting on the acceptance list for a transplant--is controlled by a stringent evaluation process developed by the United Network for Organ Sharing (UNOS).

An entire chapter in Organ Transplants prepares readers for the kinds of questions they will be asked and the kinds of answers that will help or hinder their chances of making the list. There are chapters on each of the major organ transplant procedures (heart, lungs, liver, kidneys, and pancreas), on making the decision to have a transplant, financial issues, and even what is perhaps the most difficult part of the transplant process: waiting for a transplant.

This wide-ranging guidebook also addresses emotional and religious considerations in organ transplant and donation, transplants in children, and many aspects of organ donation. A final chapter speculates on the future of transplantation, and a sizable appendix directs readers to resources for further research and support.

True to the patient-centered guide tradition, there is scarcely a page in Organ Transplants that does not echo with the voices of the dozens of transplant recipients, donors, and transplant professionals interviewed by the author.

Allen:

Let's begin with a little background information. Can you briefly sketch the history of transplantation?

Finn:

The history begins with a legend: the first transplants were performed by twin brothers, Saints Cosmos and Damian, who lived in the third century A.D. In a story that has come to be known as "The Miracle of the Black Leg," they removed the diseased leg from a Roman named Justinian and transplanted the leg from a recently deceased Moor, a black person from Africa. According to the legend, the transplanted leg survived on the Roman. That, of course, almost certainly never happened.

True solid organ transplantation started in the mid-50s with kidney transplants between identical twins. You can transplant organs between identical twins without even using any immuno-suppressive medications, because their genetic makeup is so similar that the immune system of one twin does not recognize the organ of the donor twin as being foreign.

In the early 60s, immuno-suppressive medications became available. The first successful heart transplants became nationwide news during this era, but it wasn't until the early 1980s that the development of powerful immuno-suppressive drugs, most particularly a drug called cyclosporine, allowed transplantation to really take off.

In addition, new surgical techniques were developed that allowed surgeons to transplant organs that had previously been too difficult to transplant, such as the liver. It took a long time for surgeons to develop the techniques and skill necessary to transplant an organ like a liver.

Allen:

How does your book differ from other books on the subject?

Finn:

The only other book is ten years old and does not include recent medical developments. In addition, my book is more detailed and it contains much more about emotional and support issues.

Allen:

These issues seem particularly important in the transplant process, with its combination of scarce resources and an intense regimen following transplantation. And, as in any area of medicine, there is a "system" in place that transplant patients need to understand. What are some of the issues transplant candidates face when working with the system?

Finn:

The number one issue for people with organ failure is how to get on the list. You have to meet the medical qualifications of the UNOS; but you also have to meet socio-economic qualifications. There's something that they call the "green screen"--also known as the "wallet biopsy." If you don't have enough money for a transplant or your insurance company won't pay, you don't get the transplant.

This may seem harsh, but transplants are extremely expensive and hospitals cannot afford to transplant people unless they're going to get reimbursed for their efforts. A liver transplant could easily cost $400,000 for the surgery alone, not to mention another $15,000 a year for the pharmaceuticals that you're going to need for the rest of your life. So unless you pass the "green screen," you're not going to be listed for a transplant.

Another screen you have to pass is called a "psycho-social" screen. You're extremely debilitated in the weeks before and after the transplant, so you need to have a lot of family support during that time. If you are a single person with no family and no friends who can spend 24 hours a day with you, the transplant team will probably not list you.

In addition, you have to have the type of personality that can deal with the extremely rigorous regimen following transplantation. You have to take your pills two or three times a day, depending on the pill, without fail. Unless you're the type of person who can maintain that regimen without ever missing a dose, you are not going to be listed.

So the transplant team is evaluating not only your medical condition, but your financial condition and your family's psycho-social condition as well. The chapter called "The System" offers many suggestions for passing those various screens. There's not much you can do about the medical tests, but there are ways to present yourself to help pass the psycho-social evaluation.

Allen:

What are some of the medical challenges a person faces following a transplant?

Finn:

First and foremost, dealing with the immuno-suppressive drugs. People take a lot of them, usually for the rest of their lives. These drugs have very significant side effects, and they are also very expensive.

It's true that newer and more effective surgical techniques and immuno-suppressive drugs have made organ transplants more successful; and that the transplant itself changes people's lives--they almost universally describe themselves as being reborn. But one of the things that people in the transplant field like to say is that a transplant is not a cure; you are merely trading one medical condition for another.

Allen:

So people who are considering a transplant have to consider trading the certainty of what they have for the uncertainty of a transplant.

Finn:

Yes, people who need transplants are usually very, very ill and, in many cases, the transplant may be their only hope. However, transplant is a very serious surgery followed by a significant recovery period and a lifetime of vigilance and very strong medications. A person needing a transplant has to very carefully consider whether he or she can withstand the rigors of transplantation.

Allen:

So, there's a sense of not wanting to waste a very precious resource?

Finn:

Yes. There are about 64,000 people on the waiting list for various organs right now. Only 20,000 people received organs last year. That means that every single day in 1999 approximately 13 people on the waiting list died while waiting for an organ. Those statistics don't include the people who didn't meet the strict criteria for being listed. So, yes, organs are a very precious resource indeed.

Allen:

Tell me a little about the donor side.

Finn:

There are two ways that people can receive organs: From living donors and from people who have died. Kidneys are the most common organ for which living donation is a possibility, but, in addition, we have seen the development of techniques for living liver donation and even living lung donation. In cadaver donation, the typical donor died by suffering a serious head injury that resulted in what is known as brain death.

Allen:

How can people ensure that their organs will be available for donation after they die?

Finn:

It's very important for them to sign an organ donor card. But that's not all that's necessary. You must also tell your family about your decision, because no matter what is on that card, if your family decides not to donate, your organs won't be donated. But if they know that you feel very strongly about your decision to donate your organs, then they are likely to make the decision you would wish after your death.

Allen:

What keeps people from taking the necessary steps to become potential donors?

Finn:

I think a lot of people just don't think about signing the card, or they put it off. They don't want to think about what's going to happen after their death.

Some people may be concerned that if they sign that card, their organs will be taken prematurely, when they're not really dead. There are procedures that absolutely prevent that from happening. Two different doctors have to declare death. The doctors who declare death are not the same people who are procuring the organs for transplant. There's never been one case in all the medical literature where somebody has recovered after being declared brain dead, so people can rest assured that their organs will not be procured prematurely.

Allen:

This is one of several myths about donation that you discuss in your book.

Finn:

Yes. Another myth is that there is a black market in organs where people can sell their organs for a large sum and then rich people can buy them without waiting their turn. And there's the urban legend in which a person goes to a bar, gets drunk, and wakes up in a hotel room in a bathtub full of ice with a note saying to call 911 immediately because his kidney has been taken. In this country, and in all Western countries, that has simply never happened. It is unfortunately true that in some countries, notably India and possibly China, people can sell their kidneys. But that does not happen in any Western country.

The myth that wealthy or famous people receive preferential treatment gained prevalence after Mickey Mantle, the famous baseball player who was in liver failure, received an organ fairly soon after he was listed. But this had nothing to do with his fame or his name; he happened to be the sickest person in his region at the time that that organ became available. Organs are always allocated to the sickest person on the list. A person's name does not even appear on the list, so there's no chance that a person can get an organ before someone else just because of being wealthy or famous.

Allen:

The book The Nicholas Effect makes the point that when a person becomes a donor, they don't just save one life.

Finn:

Nicholas Green is the perfect example of that. His parents very generously donated all of his organs, and seven people are alive today with Nicholas' organs. So one little boy affected seven lives directly and, of course, many, many others indirectly: all the families of the recipients. In addition, the publicity about the Greens' generous donation resulted in the tripling of organ donation rates in Italy just a few months after his death.

Allen:

Will increased awareness be enough to raise organ donation rates to meet all needs?

Finn:

Probably not. The list of people awaiting transplants is going to grow. While the number of available organs may grow through increased use of living donation, and through increased education and certain changes in policy that I discuss in the book, they will certainly not increase enough to meet the need.

The ultimate answer is to find another source of organs. My chapter, "The Future of Transplantation," outlines several possible approaches to increasing the number of available organs. One is to use organs from animals, particularly pigs. This is a field of study known as xenotransplantation. But the first usable artificial organs are probably at least ten years away. And xenotransplantation poses even more significant rejection problems than transplantation from another human.

One possible way around rejection is to genetically alter pigs so they contain proteins that would fool the human immune system into thinking this is a human organ.

However, another very serious problem with xenotransplantation is the possibility that diseases could be transmitted from animals to humans. It's known that the AIDS virus, for instance, originated in a type of monkey. Pigs harbor many kinds of viruses, including retroviruses, which can become part of the DNA. So while it's probable that there will be experiments in xenotransplantation from pigs to humans, these very serious obstacles would have to be overcome before xenotransplantation could become widespread.

Allen:

What about the possibility of inducing new organs to grow, using undifferentiated tissue?

Finn:

That's the field of artificial organs. There's a lot of very interesting research going on right now, but artificial organs are also probably at least ten years in the future, if not more.

Allen:

In your chapter on the future of transplantation, you mentioned something called "tolerance induction."

Finn:

Scientists are working on various techniques to fool your immune system into thinking that the transplanted organ is not foreign. These are generally known as anti-rejection strategies, or tolerance induction. Unlike xenotransplantation, this is a very promising and near-term field of research that is in clinical trials already. However, none of the strategies has yet been proved absolutely to work.

Allen:

Can you recommend some good on-line resources?

Finn:

There are many, many resources listed in my book. I'll just mention two here. The organization that allocates organs and maintains the list nationwide is called UNOS, the United Network for Organ Sharing. They maintain an extremely good Web site. Another more patient-oriented site developed by transplant patients and physicians is called Transweb, with an enormous amount of very practical information for organ recipients.

There's also an excellent email discussion list called TRNSPLNT-L. Not only are transplant recipients on this list, but so are transplant surgeons, transplant nurses, and various other people who are extremely knowledgeable about the transplant field. Every issue relating to transplants is discussed over the course of time.

Allen:

What would you like to say in closing?

Finn:

I'd like people to know that while all the things we have been talking about--xenotransplantation, artificial organs and future advances in transplantation--are interesting and important, these are all in the future. The real target of this book is people who are potential or actual recipients today. For example, what to do about all those medications; how to live your life after transplant; and the remarkable relationship between donors and recipients. There's really too much to cover in an interview, but it's all in the book!