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Heart Transplant Patient Workbook

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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

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

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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