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Communication

COMMUNICATING WITH YOUR TRANSPLANT TEAM

Can We Talk?

Having a good relationship with your transplant team is very important. Open and clear communication can make your life after transplantation a lot easier. However, confusion can happen for reasons such as:
  • Too much information given to you at one time
  • Your transplant team may use medical language that is difficult to understand
  • Your transplant team may not take enough time to hear or understand your concerns
  • You receive conflicting information
  • You may not feel comfortable talking with a new team of doctors, nurses, social workers, and dieticians
  • The information that you receive from the transplant team is different from the information you were expecting
  • You may feel uncomfortable asking questions
  • You may not want to hear the answers to your questions
  • English may not be your first language

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Steps to Improve Communications

You can take steps to improve two-way communication between you and members of your transplant team. Recognize your concerns and discuss them with the appropriate transplant team members. Make sure that your key concerns have been directly addressed and your transplant team understands your perspective and values.

Discussing key issues openly is fundamental to communication. Don’t be afraid to ask questions and discuss your concerns. Your transplant team is there to help, not scold or judge you. They can help assess your concerns, give advice, and assist you with pragmatic suggestions to help with problem solving and setting up a structured plan of action. Sometimes you may benefit just from venting concerns in a safe environment with a caring clinician.

WHO IS ON YOUR TEAM

Your transplant team includes many different people with different roles. Understanding their specific jobs and knowledge will help you decide who to go to when you have questions or need help.
  • Transplant surgeon. The transplant surgeon is a doctor who performs the transplant surgery. At some transplant centers, the transplant surgeon is also your main doctor after you leave the hospital. At other transplant centers, a different doctor, the transplant physician, will be your main doctor after the transplant.
  • Transplant physician. The transplant physician is a doctor who specializes in caring for transplant recipients. This doctor diagnoses and treats medical problems that may occur after a transplant. The transplant physician may review your lab tests, monitor your medications, and treat any problems associated with the transplant. Many other specialists may contribute to your care to help prevent or treat problems.
Type of Organ Transplant Transplant Specialist
  • Kidney
  • Pancreas
  • Heart
  • Lung
  • Liver
  • Intestine
  • Nephrologist
  • Nephrologist
  • Cardiologist
  • Pulmonologist
  • Hepatologist
  • Gastroenterologist
  • Transplant coordinator. The transplant coordinator is usually a registered nurse (RN) who has specialized training and experience in transplantation. Throughout the transplant process, the transplant coordinator is responsible for teaching you about your transplant, communicating with doctors on your behalf, and coordinating your follow-up care.
  • Social worker. The social worker is trained to help support transplant recipients and their families throughout the transplant process. He or she is responsible for helping you deal with difficult emotional, personal, social, and financial issues of transplantation. The social worker also can also assist you if you would like to go to school or return to work.
  • Clinical dietician/nutritionist. The registered clinical dietician/nutritionist will create a special diet plan to keep you healthy.
  • Transplant pharmacist. The transplant pharmacist is an expert in the medications that are prescribed to transplant recipients.
Some other team members responsible for your care may include:
  • Clinical nurse specialist. A clinical nurse specialist (CNS) is a registered nurse with a master’s degree in a specialty area of nursing, such as transplantation. This nurse will help you throughout the transplant process to understand your medical care after transplant.
  • Nurse practitioner. A nurse practitioner is a registered nurse with advanced education, usually a master’s degree, in physical assessment and medical management. The nurse practitioner works with supervising physicians to manage your care in the hospital and clinic.
  • Physician assistant. A physician assistant (PA) has advanced education in clinical and medical management. Like NPs, they practice in partnership with a physician to provide many aspects of care.
Other healthcare professionals who might be part of your transplant team include a physical therapist, occupational therapist, psychiatrist, psychologist, chaplain or one devoted to pastoral care, and child life specialist.

It is a good idea to have a list of the names and phone numbers of everyone who is on your transplant team so that you can quickly call them when questions come up.

Figure. Transplant team list

Figure. Transplant team list

As a general rule, the transplant coordinator will be the first person to call.

One of your most important jobs is to make certain that all members of your local healthcare team — your family physician, dentist, local pharmacist, school counselor, teachers, school nurse, and any other healthcare professionals — are aware of your transplant. Each of your local healthcare providers should be given the telephone numbers of your transplant team members. Your transplant coordinator or social worker can help you fill in the contact list.

WHAT ISSUES SHOULD YOU BRING UP?

The transplant team is available to help you maintain good health. If you are having an issue or have questions, don’t hesitate to call the transplant coordinator or the appropriate person on your team. Sometimes, you may want a family member to be with you during the discussion so he or she can listen, help explain your concerns, and offer support. Other times you might want to speak to someone in private.

Here are some common issues that can be discussed with your transplant doctor or transplant coordinator:

  • Trouble keeping scheduled medical or laboratory appointments
  • Side effects that may affect your physical ability
  • Side effects that affect your appearance
  • Symptoms that you may not understand such as sleepiness, diarrhea, headache, nausea, trembling, or fever
  • Trouble getting medications or running out of medications
  • Problems taking your medications
  • Emotional issues such as mood swings, depression, anxiety, or fear
  • Life changes that can cause additional stress, anxiety, and depression. These include losing your job, losing your insurance, getting married or divorced, breaking up with your boyfriend or girlfriend, or having a death in the family
  • Issues about sexuality and sexual function
  • Issues about relationships
  • Having children after a transplant

These are just some of the possible issues that you might face after a transplant. Your transplant team will be able to give you the guidance and support that is important to your well-being.

ISSUES MAY CHANGE OVER TIME

Early After the Transplant

Once you leave the hospital, you are your transplant team’s "eyes and ears." You will need to tell them how you feel and if you are experiencing side effects. This information will help them make decisions about adjusting your medications.

It is very important to take your transplant medications as prescribed in order to have the best chance to avoid rejection. Be aware of the warning signs of rejection and call your transplant team promptly. Many transplant recipients do not have any symptoms of rejection. Sometimes the only way for the transplant team to detect rejection is by lab tests. This is why it is so important to keep your appointments and get the lab tests your transplant team has ordered.

Preventing infection is also important for transplant recipients. In the early weeks after a transplant, try to avoid crowds or places where people may be sick.

In the first several weeks after a transplant, you’ll probably be tired. Although it may be hard, exercising will help you gain strength and energy. Start gradually. Don’t overdo it! You can also do normal household activities that are not too strenuous. Ask your transplant team about when you can return to your daily activities such as work, school, or church.

Sexual intercourse is okay after the first month of your transplant. However, female transplant recipients should avoid becoming pregnant for at least 1 year after a transplant. Talk to your transplant team about the best birth control method for you. If you hope to become pregnant after a transplant, it is important that you let your transplant team know.

Many patients are able to drive within 4 to 6 weeks after surgery. However, some anti-rejection medications can slow down your reaction time. Be sure you are ready to drive before you get behind the wheel. Also ask your transplant team about when you can return to work or school.

Six Months to a Year After a Transplant

Although you may feel better after the transplant, rejection is still a possibility. To be prepared, you should review the signs and symptoms of rejection from time to time. Also, it is very important to continue to get the lab tests that your transplant team requests.

Your medications have been adjusted to reduce side effects while still protecting you from rejection. It is extremely important for you to take your medications the right way. Getting organized is the best way to make sure that you take all of your medications at the right times each day. Let someone on your transplant team know immediately if you are having any problems taking your medications.

Exercise is very important because it can help you maintain your weight, stay fit, and keep a positive outlook. Weight-bearing exercises can also help prevent bone loss and build bone mass. Your transplant team will help you develop an exercise program that fits your needs.

When you are ready to return to work or school, you may first need to go back part-time or do some of your work or schooling from home. Talk to your supervisor or teacher about a schedule.

Also, check into your insurance status. If you find that your insurance is going to end soon, the social worker or financial coordinator at your transplant center can give you advice on how to continue your insurance coverage.

As your physical health improves, you may experience some emotional issues that affect your quality-of-life. Now that the transplant is a success, there are still challenges that everyone faces. Your social worker can refer you to sources of help to provide support for you and your family. Joining a support group can also be of great benefit to you and your family.

One Year and Beyond

By now you have adjusted to your new life as a transplant recipient. Even though you are feeling healthy, it is still important to take your medications as instructed and go to your regular appointments. You will also need to resume your other, non-transplant medical checkups.

Plan Ahead

Before you go to your scheduled appointments, be sure to make a list of any questions you want to ask or issues you want to discuss. Be sure to write down the answers so you walk away with the information you need.

Questions to Ask Your Doctor or Transplant Coordinator

Select the questions you want to ask and hit the submit button below to filter out the unselected ones.

  How is my transplanted organ doing?
  What are the side effects of my medications?
  Which side effects should I worry about?
  What should I do if I miss a dose of my medication?
  Why do I need to take so many pills?
  Which medications should I take with food?
  Which medications should I take on an empty stomach?
  What foods should I avoid?
  What time should I take my medications?
  Can I take vitamins and herbs?
  Should I take medications prescribed by another doctor?
  Can I take over-the-counter medications such as aspirin or antacids?
  How can I avoid getting sick?
  Should I get a flu shot?
  Is it okay to go to the dentist?
  What can I do to help prevent rejection?
  What should I do if I think I’m having a rejection episode?
  What are the possible complications that I should be looking out for now?
       At 1 year after my transplant? At 5 years after my transplant?
  Do I always have to worry about rejection?
  Is my blood pressure normal?
  Is my cholesterol normal?
  What steps can I take to prevent complications?
  Can I drink alcohol? If so, what kind and how much can I drink?
  Can I smoke?
  Can I get a tattoo?
  Can I have piercings? Where? How many?

Other Questions to Ask Your Transplant Coordinator

  How am I going to remember to take all of my medications?
  How often will I need to see the doctor?
  What can I do to reduce the side effects of my medications?
  When can I go back to work or school?
  What should I do if my family has to move out of the area?

Questions to Ask Your Social Worker

  What should I do if I feel depressed or anxious?
  What can I do if I’ve lost interest in sex?
  How can I help my family deal with my transplant?
  Is there support for caregivers and children of transplant recipients?
  What if my job is too strenuous? How can I get another job?
  Are there support groups for transplant recipients?
  How can I get a MedicAlert bracelet or necklace?
  Am I eligible for the new Medicare prescription drug program?
  How can I check on what my insurance covers?