Heart Transplant Patient Workbook

A key to a successful heart transplant is working closely with your team. Here's a list of the team members and questions you should ask them:

Transplant Cardiologist  |  Transplant Surgeon  |  Transplant Nurse Coordinator  |  Dietitian  |  Social Worker  |  Financial Admissions Coordinator  |  You, the patient

Transplant Cardiologist

Your transplant cardiologist does the following:

• Helps you decide if a transplant is right for you


• Manages medical care before and after transplantation


• Helps you through the steps of recovery


• Decides what medications you'll take

Questions you may want to ask your cardiologist include:

• How do I prepare for nutritional issues and muscle or weight loss process before surgery?


• What happens during my follow-up visits?


• What happens after the transplant?


• How long will it take to recover?


• How much medication should I be taking?


• What are the side effects of the medications I will take?

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Transplant Surgeon

Your transplant surgeon does the following:

• Helps you decide if a transplant is right for you


• Performs the transplant operation


• Helps you through the steps of recovery


• Decides what medications you'll take

Questions you may want to ask your surgeon include:

• How should I prepare for surgery?


• What happens when I get to the hospital?


• What happens during a heart transplant surgery?


• What are VADs? Will I need one?


• Will I have a big scar?


• How long will I be in the hospital?

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Transplant Nurse Coordinator

Your transplant nurse coordinator does the following:

• Walks you through the entire transplant process


• Manages lab tests, surgery and post-transplant checkups


• Answers any questions you have from home and sees you in post-transplant clinic

Questions you may want to ask your transplant nurse coordinator include:

• What happens before surgery?


• Why will I have to take so many pills?


• What happens when I get "the call" for my transplant?


• What do I need to know when I go home?


• What happens if I forget my medicine?


• How do I keep my medications straight?


• Can I talk to someone who has received a transplant?

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Dietitian

Your dietitian does the following:

• Manages your nutrition before and after transplant


• Tests for things that may be lacking from your diet


• Develops special diets for special circumstances


• Helps you keep your weight down

Questions you may want to ask your dietitian include:

• What should I eat?


• Do I have to worry about sodium? fats? vegetables? dairy?


• How soon can I eat after my transplant?


• Will I gain or lose weight after my transplant?


• What should I be concerned about when I go out to eat?

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Social Worker

Your social worker does the following:

• Provides education on support systems for pre-transplant patients


• Helps patients and their families cope with the stress of transplant through individual counseling and group support


• Assists with admission planning around issues such as transportation and lodging


• Refers you to community resources for financial assistance, rehabilitation and post-operative support

Questions you may want to ask your social worker include:

• What's an advance directive? Do I really need one?


• How can I be sure transplant will be successful?


• Where can my family stay when I'm in the hospital?


• Who will look after my kids?


• How can I take time off work?


• Will my job be in jeopardy because I'll need time to recover?


• Will I be able to get a job after my transplant?


• Am I eligible for vocational rehabilitation?


• How do I know if I can emotionally handle this?


• How can I find out more about individual counseling or group support?

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Financial Admissions Coordinator

Your financial admissions coordinator does the following:

• Helps you deal with the financial issues of a transplant


• Helps you understand what your insurance will cover


• Estimates what surgery and medications will cost


• Determines if you qualify for Medicare

Questions you may want to ask your financial admissions coordinator include:

• How will I pay for my transplant?


• What does my insurance cover?


• What about Medicare?


• Does my insurance cover the medications? How much will my medications cost?


• What if I can't afford my medications?


• How will I pay my bills when I'm not working?


• Will I be eligible for state disability, SSI or SSD?


• What help is available for other expenses such as transportation, lodging, etc?

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You, the patient

You are the most important member of the team. It is your responsibility to:

• Keep the team aware of any changes


• Protect against rejection by taking daily medications


• Report any illnesses or side effects


• Eat properly and exercise


• Ask questions when anything is not clear

Questions you may want to ask yourself include:

• Who should I call with questions?


• Where can I go to learn as much as possible about my condition?


• How can I make sure I go to all my scheduled appointments?


• How can I make sure I take my medications for the rest of my life?

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