When the majority of patients think about getting a transplant, they concentrate on the obvious physical aspects: the disease, the operation and the healing. They’re less probable to consider the emotional collision. But that can be profound too, both for you and the people around you.
Richard Perez, MD, PhD, the director of the Transplant Center at the University of California Medical Center at Davis, claims that he has seen all kinds of reactions to the experience. "For almost all of the patients, there is a preliminary sense of elation if the surgery goes well," he tells WebMD. "They have a sense of relief and hope."
However, as the time runs, that optimism may be hinted by other feelings as well. You may begin to be afraid of your condition reoccurring. You may start worrying about organ rejection. You may fixate on the uncertainty of the future.
It’s absolutely natural to have such feelings. But if these fears take over your life, you have no choice but to do something about it.
Guilt
"It’s very common for patients to feel guilt after a transplant," claims Jeffrey D. Punch, MD, chief of the Division of Transplantation at the University of Michigan Health System, Ann Arbor. "They think a lot about the donor of the organ and feel guilty for having benefits from his or her death."
He explains that it is frequently the most difficult for patients who became terribly ill and prayed and hoped for an organ to come through. Afterwards, they feel guilty, as if they were wishing for someone to die.
But Perez claims that most of them come to terms with their mixed emotions.
"The whole act of transplantation is a way of getting some sense of meaning from a death," Perez tells WebMD. "Both the organ recipient and the donor family concentrate on that, and it is a source of comfort for the most of them."
For the majority of patients, being in touch with the donor family can be helpful, claims Barry Friedman, RN, administrative director of the Solid Organ Transplant Program at the Children’s Medical Center in Dallas. In order to respect privacy, organ donation organizations will not let you get in direct contact without the donor family’s agreement. But still, you can write a letter that can be passed to them by your health care team.
Family Issues
"It’s frequent for individuals to have problems with their families after transplantation," Punch states. In most cases, transplants occur rather unexpectedly. It’s not something you can plan on. As a consequence, your home life may be turned upside down on a moment’s notice. You also do not have a chance to predict how you’ll feel afterwards.
"Steroids can make it all worse," Punch says. For him, these are mood amplifiers.
"In the first few weeks after the transplant, the majority of patients are on pretty high doses that will wind them up and make it hard to sleep," Punch explains. "When they’re happy, they’re bouncing off the walls and hugging everyone. But when they are angry, they’re furious. When they’re sad, they’re really blue."
The abrupt changes in the family life - and in the transplant recipient’s behavior - may be extreme.
"I’ve had people who told me, ‘You took my husband, and you gave me someone else back,’" claims Punch. "It can really be that dramatic. However, we tell them that it’s a process that takes some adjustment and time."
Disappointment and Frustration
Transplanting organs is a highly successful therapy and the majority of people who get them are able to lead normal lives. But there still may be bumps in the road to recovery. For some patients, that can be extremely difficult to handle.
"Some patients have too high expectations," says Perez. "They expect that they will be back to normal immediately, and they are disappointed or depressed when that doesn’t take place."
Punch claims that this is particularly true of patients who get preemptive transplants. The vast majority of people who receive a transplant feel much better afterwards, since they’ve been very ill. But it’s the opposite for patients who get preemptive transplants. These people may be on the verge of organ failure, but do not experience any symptoms yet. Then they have the surgery.
"Before the transplant, they felt healthy, but after, they feel relatively unhealthy," explains Punch. "Even if you are aware that your transplant was necessary, it can be very difficult for you to check out of the hospital feeling worse than when you went in."
Getting Help
As you adjust, some of these feelings may bother you less. According to Punch, part of living with a transplant is accepting uncertainty.
"You need to remain optimistic, however at the same time accept that it is impossible to know just what’s going to happen," Punch claims. "You have to roll with the punches."
But while living with some uncertainty is necessary, you should never accept depression or constant anxiety as unavoidable. If you suspect that you’re becoming depressed or chronically anxious, consult your physician. Seek medical attention or psychological help.
A lot of people also discover that support groups can make a big difference. In everyday life, you don’t run into many people who have had a transplant. But by joining a support group, you get to talk to people who are undergoing the same thing that you are. Ordinary meetings with people in your position can be extremely beneficial.
