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A Transplant Recipient's Story

Posted Aug 24 2008 1:49pm
MARK POCHAPIN: Welcome to our webcast. We're going to talk about a topic that is becoming more commonplace with increasing and improved surgical and medical techniques. That is transplantation. Organ transplantation we often think is something that really belongs in science fiction. With me today are two people who know quite a bit about transplantation. A friend and colleague, David Pearl, who works with me, is a liver transplant recipient. He is an ultrasound technologist at New York Presbyterian Hospital. Welcome, David.

David, let's focus on your story for a little bit. The reason I say "story" is because it really is quite a thing. We've discussed this in the past -- we've presented it to some of the medical students -- but I think it's important for people to understand what you went through. Currently you're an ultrasound specialist and you perform ultrasound on many people -- in fact liver ultrasounds, right? But that wasn't always the case before you were quite ill. I want to go back to the beginning of when you were diagnosed initially with not liver disease, but intestinal disease. Tell us a little about that.

DAVID PEARL: At the age of 18 I was diagnosed with colitis, which is basically an autoimmune disease where your body attacks your own intestines. Initially, it was just the colitis, but they realized that some of the inflammatory process had worked its way into the liver and was attacking my liver. I was diagnosed with an autoimmune disease called sclerosing cholangitis.

MARK POCHAPIN: How old were you at that time?

DAVID PEARL: I was 18 years old.

MARK POCHAPIN: So you were 18 when you were diagnosed with the liver disease or with the colitis?

DAVID PEARL: With the colitis and the liver disease at the same time. Possibly the liver disease a few days later. They had done a liver biopsy and they diagnosed me with the liver disease.

MARK POCHAPIN: Now, the sclerosing cholangitis, as it's called, is a liver disorder. What did they tell you when you had the diagnosis of this?

DAVID PEARL: Actually, they really didn't handle it very well with an 18-year-old. They had told me that they were doing a lot of research and that they didn't know what would happen down the road but that they had hoped that transplant would evolve to give me my life back.

MARK POCHAPIN: So at this point, what year are we talking about, approximately?

DAVID PEARL: This was, I think, in '75, '76.

MARK POCHAPIN: So liver transplantation was really just something that people spoke about but wasn't, in fact, reality at that point.

DAVID PEARL: Right, because they hadn't come up with the magic drugs to ward off the rejection. They were just doing kidney transplants at the time.

MARK POCHAPIN: So what happened to you clinically? What type of symptoms did you develop?

DAVID PEARL: With the combination of the colitis and the liver disease -- sclerosing cholangitis is a very slow-moving disease. It's something that doesn't sneak up on you quickly. It works very slowly. So that wasn't so much of an issue. Occasionally I would have bouts of jaundice, some fatigue and stuff like that. But the colitis at that point, until they got that under control, was more of a difficulty -- frequent bowel movements, weight loss, trouble eating -- that was the issue at that point.

MARK POCHAPIN: When did the liver issue become more of a problem, something that was not easily handled?

DAVID PEARL: Actually, they were watching my enzymes as I saw a gastroenterologist through the years, and my liver enzymes were starting to bump up and get elevated. I'd actually gone out to Minnesota, to the Mayo Clinic, to look at the transplant team out there. I guess I was an educated consumer, but I was a little leery about being transplanted in New York. Being a native New Yorker, maybe I thought if they couldn't fill the cracks in a street how could they give me a new liver? So after I came back from Minnesota a few months later, I had gone up to Mount Sinai and I met the transplant team up there and I was very impressed with how well they had handled everything and spoken to me, and I was pretty comfortable with them. Actually, the day after I saw the transplant team I had a bleed, an esophageal bleed.

MARK POCHAPIN: What does that mean? It means you were vomiting blood?

DAVID PEARL: I was throwing up blood, projectile blood, which is very dangerous. It's very easy for you to bleed to death at that point with a bad liver.

MARK POCHAPIN: The medical term is called a variceal bleed, and the varices are due to the increased pressure in the liver trying to get the blood away from the liver, and the way we're wired up, it forms around the esophagus. So you had a major life-threatening bleed the day after, in fact, you had seen this transplant service in New York. Now, what year are we talking about?

DAVID PEARL: This was December of '91. It was the day after Christmas, December 26. My wife was out -- she's a nurse -- she was out with a friend who is a doctor, actually -- and I just started throwing up blood and I had seen the transplant team the day before. I called them up and they told me, "Get into the city right now." Some of my friends drove me into Manhattan. It was a gastroenterologist was trying to stabilize me at that point. They were trying to tie off the varices in my throat and get me stabilized and assess the situation at that point.

MARK POCHAPIN: Now, how long did you stay sick to the point where you finally did get a liver transplant?

DAVID PEARL: I was badly sick from that day of the bleed until the transplant.

MARK POCHAPIN: How did it come about that you found out you got a transplant? Was it something that came about at a time when you were really critical, or could it have waited longer?

DAVID PEARL: When I had the bleed, from what I understand, I don't think they would have wanted to transplant me. They wanted to stabilize me. I had blood clots in my lungs. I was critical. They had to get me a little bit more stable and put me on the list.

MARK POCHAPIN: But you were in a life and death situation at this point?

DAVID PEARL: Yes. What happens is, until you get the new liver, it's always life or death, because you could always have the next bleed, and the next bleed could be the one.

MARK POCHAPIN: So did you think that you were going to die at that point?

DAVID PEARL: I thought it was a good possibility. I was pretty concerned.

What happened was, I went to the transplant clinic up at Sinai every six to eight weeks and watched my blood work, and I had to go back to work. I had two kids, a wife, a house to support. I couldn't stay home and wait for a liver. I think it probably would have driven my crazy. Probably my wife would have killed me, also. But I had to go back to work. I went back to work every day wondering if I was going to get a call.

MARK POCHAPIN: So you were just waiting for a phone call.

DAVID PEARL: Carrying a beeper and hoping that the phone would ring, yes.

MARK POCHAPIN: What happened?

DAVID PEARL: There is a picnic that they have every year or so up at Central Park for the Sinai transplant services. I was on the list. I was on for nine months at that point, and they knew that I was near the end. I was going to meet somebody who worked for the New York donor network who is a heart recipient. I was going to do a donor booth. I wanted to try to raise awareness about the donor shortage. They procured the liver that night. I went home and got transplanted on my birthday. Actually, the phone call occurred on my birthday, and they bring you in that night. They brought my immune system down and started the pre-op stuff. I got transplanted the day after my birthday. I got the call on my birthday, and it was quite a nice birthday present.

MARK POCHAPIN: What happened afterwards?

DAVID PEARL: The road back was hard. It's probably one of the biggest and hardest surgeries to undertake as a patient. But I was back at work in four months at New York Presbyterian Hospital, and now I get to do the ultrasounds on the patients that are waiting, so it's quite ironic.

MARK POCHAPIN: You got the transplant through someone else's misfortune. We've talked about this before, but how does that make you feel? What is that like?

DAVID PEARL: It's actually hard to know that somebody died so that you could live, but you have to understand, there's always going to be people in car accidents and skiing accidents and pedestrian accidents and bicycle accidents. At that point there's nothing that they can do for that person. If that person is brain-dead, there is absolutely no chance of recovery. It's not a coma. They're on life support and there's nothing that's going to bring that person back. Eventually all the organs will fail and the person will be buried with their organs that could have saved eight lives, 10 lives. I feel awful for them, but I'm grateful for their decision.

MARK POCHAPIN: What has happened to your life since then? I know there was quite a blessing in life afterwards.

DAVID PEARL: As I said, I went back to work after four months. Eight months after my transplant I was backpacking in upstate New York, and three years later I had a daughter, Melanie. She's unbelievable. I had two sons before her, and they are just as cherishable. They gave me my life and gave me my daughter and let me watch my children grow up. It's fantastic. You can never get a gift like that.

MARK POCHAPIN: What would you say to the family that was involved in this donation, the donor family?

DAVID PEARL: I've written them letters, and the reply was very favorable, and they knew that they had made the right decision.

MARK POCHAPIN: Do you have a letter with you?

DAVID PEARL: I have a letter, and they're very supportive of me, and they were very happy. When I was transplanted in '92, there wasn't as much emphasis to try to make the circle complete. But they've found now that a lot of the recipients and the donors want closure. They want them to know that they had made the decision, that it was the good thing to do. It was the right thing to do. Out of all the heartache that they were going to face and the long road for their recovery, that somebody else was able to benefit from such a tragic thing. That is, in essence, organ donation. Somebody benefitting from a horrible incident where it's a lose-lose situation, maybe, for that family, and the other families that get transplanted, it's at least win for them.

MARK POCHAPIN: It's life.

David, do you want to share the letter that you wrote to the family?

DAVID PEARL: Sure. I have two letters that I wrote. This is the letter that I wrote. I unfortunately didn't bring the reply, but this was printed in a hospital activities thing that was sent out to all the people that work at New York Presbyterian. It's called "The Recipient's Appeal."

"Dear Donor Family:"

"It has been five years since our lives had crossed, and I must apologize for not writing sooner. I am sorry for your loss. Your family reached out from within at a time when most are not thinking of giving, when you had lost so much, and you gave. You gave me life, and I will be forever grateful. Thank you. Please rest assured that I will safeguard and cherish this gift you have bestowed on me. I hope you can be somewhat comforted by the fact that after I received my new liver on my birthday and I returned to a completely normal life. I continue to work and enjoy my family, but there is never a day that I fail to understand where I have gained so much, when another has lost so much. Life is precious. Thank you for giving me back mine."

I got a beautiful reply from that, just very supportive.

MARK POCHAPIN: It's an unbelievable letter. So many of us take so much for granted every single day, and one thing I've learned from you, David, working with you is that every day is precious to you. It's unfortunate that people have to go through these types of things to appreciate that component, but it is unbelievable that a family could offer you so much and, knowing you and being friends and working together, how much you give back. I know patients who you do the ultrasound on, specifically for liver, are always amazed when they find out that you yourself are a liver recipient.

DAVID PEARL: We've been doing a lot more liver transplants, and they've been coming for sonos. They usually come and they say, "Give me the guy with the new liver." It's nice. They might be freshly transplanted and they might not have their strength and they might not be doing well at the time. It's very nice for them. Kidney patients, too. They come in... and they're not doing well, and I'm very supportive to them, and I visit patients occasionally.

MARK POCHAPIN: Thank you for sharing your story.

We appreciate our audience joining us. A very moving story. It's hard to imagine that something so tragic can be converted to something that's so wonderful, that is, someone who donates an organ at a time when a family is in such grief can really give life, and something that we should all remember and keep in mind, and cherish our own lives every day. I'm Dr. Mark Pochapin. Thank you for joining us.

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