Most people share a common misconception after organ transplant surgery, according to Marwan Abouljoud, MD, of the Transplant Institute at Henry Ford Hospital System in Detroit.
After their transplant, most people just do not understand the magnitude of the surgery they went through. Many think recovery is a matter of a few weeks.
Not true, Abouljoud has to tell them. Recovery is hard work, as is coming to the realization that the transplant surgery carries benefits as well as challenges. Chief among the challenges, Abouljoud and other experts say, is that you have to become accustomed to your new medication regimen, designed to prevent rejection of the donor organ. There's also a chance you'll need to come back to the hospital for something minor or maybe more surgery.
To make recovery go smoothly, here is what you need to know about your post-transplant period.
Emotions After an Organ Transplant
The good news: "The majority of people feel better after an organ transplant," says Gigi Spicer, RN, vice president of transplant services at Tulane Transplant Institute, part of Tulane Health System in New Orleans.
A typical comment she hears is this: "I didn't know how badly I felt." With that increased sense of well-being, patients are often euphoric.
While that sense of elation is wonderful, Spicer says to remember that you can't push your body faster than it wants to go.
Medications After an Organ Transplant
Like all organ transplant patients, you left the hospital with multiple medications. Perhaps some are to treat underlying conditions such as high blood pressure.
But the other medications are immunosuppressant drugs to keep your body from fighting off the donor organ. A heart transplant patient can leave the hospital with 10 or 15 prescriptions, Diane Kasper, transplant clinical nurse manager at Mayo Clinic Hospital in Phoenix, tells WebMD.
To avoid problems post-transplant, you must take the medications as prescribed. It can help if you ask your doctor or pharmacist exactly what each medication is for and to describe possible side effects so you can be aware of them and report them.
Your Post-Transplant Routine
Expect to have an ongoing relationship with your organ transplant team. Depending on the type of transplant and your health status, you will be given a schedule of follow-up exams.
For example, if you had a heart transplant, you might meet with your health care providers twice a week for two months. Blood work is needed to follow your progress. Perhaps you'll go to a support group. And always, you have to be on guard against infection.
For the rest of their lives, organ transplant patients have to watch out for infection, Kasper says. That means no sushi and no salad bars. It means avoiding contact with sick people. You also can't be around people recently vaccinated with live vaccines, because that person is shedding the live virus.
It's crucial to promptly report side effects with post-transplant medications, says Spicer. And it's important to keep underlying medical conditions, such as diabetes and high blood pressure, under control. If you lost a kidney because of diabetes, for example, and you don't keep your sugar under control, you are going to hurt your kidney again. The surgery has not left you invulnerable.
Organ transplant surgery is a trade-off, Kasper says. But if you realize the surgery is done to give you a better quality of life, it can make it easier to follow all the new health measures you are now expected to heed, such as taking your immunosuppressant medications on schedule.
Be sure to cultivate a strong support system, especially for right after the surgery, says Penelope Loughhead, LMSW, an organ transplant social worker at Memorial Hermann Hospital in Houston. She suggests having someone learn about your medications with you, so they can be a safety net for you when you get home.