Waiting for your transplant
Wait times for transplants vary. Not everyone who needs a transplant will get one. Because of the shortage of organs that are suitable for donation, only slightly more than 50% of people on the waiting list will receive an organ within five years.
After your evaluation, it’s important to prepare for your transplant while you are waiting. Work closely with your transplant team. Keep all scheduled appointments. Build a solid support system of family, friends, clergy and medical professionals. Let people know what’s going on in your life. They can be a tremendous source of support and information. Taking these steps puts you in control.
Many patients ask “Where am I on the waiting list?” UNOS’ patient services assistant, Ruth Henson, explains:
Preparing yourself medically
While you are on the waiting list, your transplant team will monitor you continuously.
Preparing yourself medically
If your condition improves or complications arise, you may be taken off the transplant list. Always discuss any concerns with your transplant team. Remaining healthy and active before the transplant will make recovery easier.
- Take care of your health. Take your prescribed medicines. Notify your transplant coordinator about all of your health issues and any other prescriptions.
- Keep your scheduled appointments with your physicians. Until your transplant, you will need to meet with the transplant team so that they can evaluate your overall health.
- Follow diet and exercise guidelines. Weight management is important while waiting for your transplant. A dietician and physical therapist can help you develop a program that will give you the best results. Ask about ways to reduce the use of painkillers and how to manage issues with alcohol, tobacco, or drugs.
- Make sure you are available. Your transplant team needs to know how to reach you at all times. Cell phones, pagers, or answering machines may be required by your transplant center. Your transplant coordinator may ask you to stay within a certain geographic range.
- Complete medical tests and procedures. Ask your transplant team about other elective or required surgeries (not related to your organ failure) before your transplant.
- Women of childbearing age: Ask your medical team about birth control and pregnancy and what precautions you should take before and after your transplant.
- Stay organized. Keep a binder of your records to help you manage your medical information. Stay in contact with your transplant team to learn about your waiting list status.
From organizing your personal affairs to packing your bags, there’s a lot to do before your transplant.
- Select your primary support person. Choose someone you feel close to who has the time, health, and flexibility to be your caregiver. You need to know you are a not a burden to this person.
- Prepare a phone/email tree. This will make it easier for your caregiver to update friends and family and cut down on phone or email volume.
- Organize your personal affairs. Consider filling out an advanced directive, writing a will, and sharing access to bank accounts, email, or blogs. You may also need to fill out Family Medical Leave Act, insurance, or loan deferment paperwork.
- Consider dependent care. Find someone you trust and set up a plan to take care of your children and/or pets. Ask your doctor when you can expect to see your children and pets after your transplant.
- Arrange transportation. When you are on the organ waiting list, your first responsibility is to plan how to get to the transplant center quickly when you get the call that an organ is available. Make arrangements well in advance. Plan the driving route and think about traffic conditions. If you are relocating, make housing arrangements in advance.
- Pack your bags. You’ll need to be ready to leave as soon as you get the call that an organ is available. Include insurance information, a list of medications, an extra 24-hour supply of medication, and other necessities.
Major health problems can impact your finances. It’s important to make a realistic financial plan.
It can be scary to face concerns about:
- loss of income, employment, or insurance;
- high medical bills;
- and the need to apply for financial help.
Yet facing these possibilities helps you gain a degree of control over the unimaginable. A good financial plan begins by talking with your loved ones about your situation. Most transplant programs have financial coordinators and/or social workers who can help you create a plan to cover transplant costs and find funding resources.
Transplantation is a whole new world with a whole new language to learn–one filled with medical terms, abbreviations and acronyms. The best way to navigate this world is to choose to become a lifelong learner. Carefully review any educational materials provided by your transplant center. Many organ- or disease-specific organizations also provide patient education. Join a transplant support group, either in person or online, for information and support. As you learn about the transplant and what to expect, you will gain control of your transplant experience and your life.
Spiritual growth and challenges await many transplant candidates and recipients. Some find that life-threatening illness makes them question their faith; others find their faith strengthened through the transplant process. Your second chance at a healthy life may come with the knowledge that another life was lost. Receiving a donor organ may create a sense of spiritual rebirth. This may create a profound change in your beliefs, and spiritual guidance and counseling can help you deal with these issues. Just as every patient has different medical issues, spiritual needs vary as well. Talking to your pastor, your rabbi, or the hospital chaplain may help.