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Life after Transplantation

By Rhonda Mann
Beth Israel Deaconess Medical Center Staff

"It's an experience I could have lived without," jokes Darcy Deer about his liver transplant in 2001. Then, he pauses. "Actually, it's an experience I couldn't have lived without."

Hepatitis C had destroyed Darcy's liver and with the waiting list for a liver so long, he believes he would have never survived to receive a cadaver organ. His cousin became his rescuer, offering a portion of his own liver. While Darcy was eternally grateful, he had given little thought to what lay ahead.

"There is plenty of information on what to expect beforehand and when you're in this position of needing a transplant, you don't care about what happens afterward," he recalls. "The transplant was the easiest part. Surviving the post-transplant treatment is the hard part."

This is a common scenario, according to Dr. Michael Curry, Director of Liver Transplantation at Beth Israel Deaconess Medical Center.

"Liver transplantation is one of the biggest surgeries a patient can face and the transplant itself is only a small part of the process," Dr. Curry says. "Some feel they will be back to perfectly normal living afterwards and they don't realize there is a need for follow-up medical care."

Dr. Curry says it's critical for patients to have a strong support network of family and/or friends in place so after the transplant, they are cared for and have access to their health providers as needed.

"When you call a patient and tell them their blood test has come back abnormal and they must come back to the hospital, the last thing you want to hear is, 'sorry, I can't get a ride,'"explains Dr. Curry.

"You don't just go to the hospital for 3 weeks and go home," explains Darcy. "I was admitted a dozen times between my transplant in June and the end of the year. You need to be ready for that."

Transplanted patients also must take medications to prevent the organ from being rejected. Because these drugs weaken the immune system, they can also open the door to infection. Patients should wear sunscreen at all times, as the drugs may heighten the risk of skin cancer. Some of these medications also increase blood sugars which can lead to diabetes, or blood vessel changes that can cause high blood pressure and high cholesterol which could lead to more medical visits. One of the greatest challenges, though, is simply getting patients to understand the importance of taking the medication properly.

"There is a heavy patient responsibility," says Dr. Martha Pavlakis, Director of Kidney and Pancreas Transplantation at Beth Israel Deaconess. "If a patient skips their immunosuppression medications, even just every week or so, the kidney will last only two years instead of a possible 15 years."

There can also be emotional issues post-transplant. Patients and their families can feel nervous, stressed or depressed with a long recovery process. It may take longer to get back to driving, working - even sexual relations than expected. There may also be financial stress.

Dr. Jim Rodrigue, Transplant Psychologist at BIDMC, says just like running a marathon, patients need to train for both the physical and mental aspects of the race. Even more important, patients should not view the transplant itself as the finish line.

"We often see an increase in depression during the first three to six months post-transplant," explains Rodrigue. "Just like a long marathon, you need to have people who support you, cheer you on during the difficult times, and you need to find a good pace to heal and to live."

Darcy says, the recovery was longer and slower than he expected.

"You can't focus on tomorrow. Think about what you're going to be doing in a year. The long-term goals are what makes it work," he advises.

For Darcy, that long-term goal was sharing basic day-to-day life with his three children--soccer games and school plays he thought he wouldn't be around to see.

"Today I sat on the dock and watched them do water sports," he said. "They're having a ball…and so am I."

To contact the Transplant Center at Beth Israel Deaconess Medical Center, call 617-632-9700 or visit www.bidmc.org/transplant.

Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.

Posted December 2009

Contact Information

Transplant Institute
Beth Israel Deaconess Medical Center
Lowry Medical Office Building, 7th Floor
110 Francis Street
Boston, MA 02215
617-632-9700

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