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What to Expect as a Transplant Caregiver Jan 5, 2021 | By Kristin Eggebraaten (@keggebraaten)Comment receiving replies
@actsoflight Hi and welcome to connect. I myself am a heart Transplant Recipient. My caregiver was my wife and my daughter as a backup. I live with my wife and my daughter is not far. So I would first consider that you would need to be either living with the Recipient for at least a few months. Or be very close. For me there was a lot of things I could not do myself mainly concerning transportation. But also was not able to perform basic duties like lifting more than 10 lbs for about 6 weeks. Then slowly thru exercise was able to get back to normal self care. Driving to the many appointments during the first few months was also required. They let me resume driving at 6 weeks also but not long distance. Fatigue is also a problem at first so anything that takes time to accomplish will get better over time. We live in a 2 story house and even climbing the stairs I couldn't do at first so i stayed in a spare bedroom on the first floor.
One other thing is there is a requirement of biopsies starting bi weekly and slowly extend out to monthly over about a 6 month period and last almost a year but getting further apart as the year progresses and he will need a driver for all of those.
Now this is based on a non rejection basis. If a mild rejection happens the biopsies can be more frequently. The biopsy is the only sure way to verify the heart is not rejecting. They also want the caregiver to come to most every apt I would say for the first 6 months but maybe even longer. I'm now 3 years out and I usually don't need my wife along now so some off this based on covid may be different. But depending on how far away you are may be a factor even for a year. At a year I also had procedures requiring a driver, and even a couple of times during the year up to now. This past year as an example I needed my wife or someone to be my driver after a procedure a couple of times. The full time part was probably only necessary for the first 6 months and then monthly up to the first year mark. I hope that helps
Blessings
Dana
Replies to "@actsoflight Hi and welcome to connect. I myself am a heart Transplant Recipient. My caregiver was..."
Once again Dana, thank you so much for sharing. Is it possible to converse with someone who's been a care giver? I think that too would be extremely helpful. The other thing that's concerning is the fact that someone on a waiting list could get a call at any time so that care giver needs to be available at a moment's notice. Is that correct? I have so many questions that lead to more questions. Such as, what if the person lives in the country, has no family that can travel nor do they have a significant other? Are there any suggestions for people like that in terms of getting a care giver?
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Thank you so very much Dana. I sent this on to the person who is in need of this transplant. I live in NYC and he in Mississippi. It would appear that being his care giver wouldn't be a wise choice. There's no way I could be away for all those months. I was also reading about the fact that one never knows when that call "we've got a match" could happen. He's got a little dog that has to be considered that can't be left alone. So one would really have to be ready and able to get to his home.