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PREPARING FOR YOUR TRANSPLANT By Lisa Beyer
In the words of one transplant recipient, being told you need a transplant is like being told you're going on a trip to Mars. How do you begin to prepare for what is not just an operation, but a complete physical, emotional and financial change in your life? It's not as difficult as you might think. Prepare, learn and ask questions.
This is a subject about which I know a lot. I was told I would need a new liver in the not-so-distant future. First I panicked, then I became depressed, and next I began to prepare for my trip. Based on my experience, I've developed a list of ideas to consider when facing an organ transplant which may help you or someone you know.
CHOOSE YOUR TRANSPLANT TEAM
Your physician has told you a new organ is needed, and has probably recommended a transplant center. First, get a second opinion. Then:
- Identify the transplant centers in your area.
- Investigate their track records and transplant teams.
- Decide which center will be the best for you, taking into consideration how you will get there, where your family will stay if it's far from home, and how you will coordinate
follow-up visits and care.
CHECK YOUR FINANCES It's unfair that you should have to think about money when your very life is at risk. But hospitals want to know how you're going to pay for your transplant and the immunosuppressant drugs you'll need to take every day post-transplant.
"I advise my patients to stay at their job if they are working and have health insurance," says Karla Nehls Christensen, transplant liaison with the Department of Patient Financial Services at Northwestern Memorial Hospital in Chicago. She also recommends changing health insurance coverage only during your company's annual open enrollment each year, and only if you understand your new insurance coverage. She stresses that candidates must read their health insurance policies to look for pre-existing condition riders and other factors that may prevent full coverage for transplantation.
USE SUPPORT GROUPS Your transplant center may have its own support group, and there are groups such as Transplant Recipients International Organization (TRIO), which have chapters throughout the U.S. For information call the national office of TRIO at 1-800-TRIO-386.
Support groups provide a valuable source of information from people who share your experiences. You can even join a support group while you're waiting for your transplant. "We started our organization because we found that many people weren't adequately prepared for their transplant," says kidney recipient Don LaRocco, co-founder of Organ Transplant Support, a Naperville, Illinois-based group.
PAY ATTENTION TO YOUR EMOTIONS If you find that the prospect of a transplant is affecting your emotional well-being, you may want to seek additional support. Sources include your transplant team (which often has a therapist on staff), counseling from your church, or a private professional.
If you do nothing else, make sure you approach your transplant with a positive mental attitude, because how you feel emotionally can have a significant impact on your long-term recovery.
TAKE CONTROL OF BEING INFORMED Ask your physician and transplant team for brochures and book recommendations. Check your local library - a college library is better and a medical library is the best source of information.
Information is power, and you and your family need it to help get through this process. A word of caution: Every transplant experience is different, so what you learn may differ greatly from what you will actually experience.
SECURE BLOOD DONORS Though every transplant center has different rules and procedures, you will be able to plan for blood donations if this is a concern. You can:
- donate your own blood in advance; and
- have relatives and friends donate blood on your behalf.
I've made a list of close friends who've agreed to give blood. When the time comes, my friend Lorie Beth will alert my donors to go and donate. While the blood supply is carefully tested and controlled, I know that it's going to help my peace of mind to receive a supply of blood in which I have confidence.
CONSIDER PAIN MANAGEMENT In advance, ask your transplant team what you can expect in terms of pain, and make it clear that you do not intend to suffer. Make certain, as well, that your point person understands your feelings. If you are going to be incapacitated - or have a tube in your throat - you may want to develop a signal for pain. Your point person should be ready to advocate for you as necessary.
DISCUSS CONCERNS WITH YOUR
TRANSPLANT TEAM Make a list of your fears, concerns and hopes, and discuss them with your transplant team. Items for your list might include: pre- and post-operative procedures, such as blood tests, x-rays and biopsies; what your post-operative period will be like, i.e. when you will eat ice chips, drink, eat, have your tube removed, etc. It's good to have a mental picture of what is going to occur, even if the real thing differs when you actually encounter it.
ARRANGE FOR YOUR RETURN HOME When you are released from the hospital, you will require assistance for several weeks. Make arrangements beforehand. Consider the layout of your apartment or home and decide where you will recuperate, perhaps in a family room if your bedroom is upstairs. Arrange for someone to take you to the hospital for check-ups.
You will be educated on your medications and may be given a supply of those medications upon your release from the hospital. Eventually, however, you are going to be faced with refilling those prescriptions and handling the mounds of insurance paperwork that accompany them. Decide on your pharmacy needs now. PharmaCare Pharmacy, which provides comprehensive medication services and is highly specialized in meeting the needs of transplant recipients, can help to make your life simpler. PharmaCare will directly bill your insurance company, deliver your medications on a regular basis, and provide medication counseling, LifeTIMES magazine and other support services to help you manage. You can even enroll in PharmaCare Pharmacy services before your transplant to make your life easier later.
PREPARE A LIVING WILL A living will indicates what you desire in terms of medical care, should you become unable to make decisions for yourself. According to Sherry Weinstein, director of community relations at Alden Nursing Center in Naperville, Illinois, a living will is no longer valid unless you have appointed a "durable power of attorney." This means that you have appointed someone to speak on your behalf should you become unable to do so.
Weinstein notes that the living will and durable power of attorney documents can be produced on your own (many healthcare providers offer do-it-yourself guides). She advises a discussion of your feelings with your designated prospective power of attorney.
PACK FOR COMFORT I've made a list of items I'd like to have in the hospital. For example, I want a few magazines that don't require much brain power or time to read. I'll need my favorite body lotion, my glasses, my feather pillow, and lots of comfy socks and nightgowns (wearing your own clothes can make a huge difference in your attitude).
I've made flash cards because I'm paranoid about not being able to communicate with a tube in my throat. I'd like my tape deck and headphones and some mood-lifting music. I'll personalize my hospital room as best I can.
Facing an organ transplant is never easy. However, I've found that by approaching it logically and intellectually, I am better able to keep my fears at bay. I am gaining more control of the situation. I've also found that packing for a trip to Mars really isn't that difficult -- if you know what to expect when you arrive!
| About the Author |
Lisa Beyer is a free-lance writer who is prepared for her own transplant and is now on the waiting list to receive a liver. The author extends credit and appreciation to Sue Scoleta, part of the transplant team at Chicago's Northwestern Hospital, for reviewing this article for accuracy.
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