The HeartBrothers’ October 2023 Virtual Patient Support Group covered a wide range of experiences surrounding heart transplants.
"You don’t realize how sick you’ve been until you get your new heart,” said one participant.
As a recap, we have outlined the main topics below:
Those in attendance talked about potential side effects during the heart transplant process:
Vertigo as a side effect of surgery and/or medication
End stage heart failure affecting one’s cognitive ability
They also discussed the intricacies of having an LVAD:
You cannot have one if you live alone; a caretaker is required.
There is a possibility of needing more than one LVAD. One participant had two in his nine months on the transplant waiting list. “I walked around with batteries and plugged myself into the wall,” he joked.
Another key topic was the importance of having a support system:
A participant who received his heart transplant in August 2023 said it was the many visitors he had, including the HeartBrothers, that allowed him to see first-hand the impact the HBF organization has on patients without a support system. (It inspired him so much that he and his wife have now raised several thousand dollars for the HeartBrothers.) Many of the participants formed strong bonds with other patients in the hospital. They found that laughter and sharing stories helped get them through such a difficult time.
Other topics that were touched on included:
“Positive mental attitude will get you everywhere,” said one participant. The genetic make-up of one attendee prompted a conversation about gene testing. After becoming sick, a couple of the participants underwent genetic testing to discover if their children may be affected.
The changes in heart transplantation over the years. Namely, that more hearts are becoming available from donors who die from overdose and that technology has enabled hearts to survive longer outside the body before transplantation, which provides more opportunity for transplantation to be successful.
To learn more about our next Patient Support Group, click here.