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What is my obligation? (transplant caregiving)

Caregivers | Last Active: Apr 27 4:55pm | Replies (23)

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@danab

Hi @minerva56 I received a heart transplant 6 years ago and my wife of only 11 years was my caregiver. First off yes at first its about having someone to drive to appointments, Be available to take back to the hospital for any tests that are required for mostly the first year. Now as for forever, at least in my case I have been self sufficient to drive, clean house, do all my own personal care, Shower, bathroom all on my own since about the 6 month mark. Now unlike a lifelong illness a heart transplant is more of a short term need of care and a support system mostly for rides. Certain procedures and tests require sedation and a driver is needed. My daughter is my secondary and I have not needed her help at all. Maybe my case is not the norm but as an example I go to the Gym 3-5 days a week. can walk 4-5 miles and do all my own house work, Cooking and laundry. I use an alarm to remember to take my meds and set-up my own med box each week. These are all things the transplant team will discuss with the patient and caregiver. For my wife the hardest part was all the driving as we live about 70 miles from Mayo Phoenix. But like the last 2 years I have drove myself as there was no testing that required a driver. Please know I also know of people who after transplant even went back to work and live very normal lives. So I would say your commitment will be intense for the first 6 months, Then will taper off and after a year will mostly be rides a few times a year for tests that require sedation. As a matter of fact my wife just recently had a fall and broke her hip. She had a partial hip replacement and is having a lot of pain. So now I'm full time caregiver as she cant drive since it was her driving leg and its to painful to drive. My yearly check-up was last week and the doctor asked about Her and I told her but if needed I have my daughter Nerby. So I hope that helps and I would also suggest you see if you can find a support group at the transplant center. Mayo I know once a week has them and its a time to get together with other patients and care givers to share stories and ideas. Its a great support system. Also please ask any question you like. Unlike your former husband who it sounds like had a terminal illness transplant can be quite different. I've met many who have had Heart transplants and have very few problems for as much as 25 years that I know of. I met one young man who was in his twenties who received his heart as a baby. Lived a very normal life had a job and looked like anyone else his age. So I'm here to help you thru your decision and maybe if you talk with Him, He can reach out to his kids. Hope that helps
Blessings

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Replies to "Hi @minerva56 I received a heart transplant 6 years ago and my wife of only 11..."

Thanks for that post. My partner/caregiver is growing weary, but doesn't acknowledge this to me. I am on UNOS waiting list for liver transplant at mayo jacksonville. We are both hoping this will give us back a semblance of normalcy in our lives. Every day I'm both grateful and guilt ridden. We have met and talked to transplant patients and caregivers. Very encouraging with straightforward information from both perspectives. Ty for your post.