JessicaL
Living with heart failure can be overwhelming, but having connections can make a big difference in managing it and improving mental health. Having a support system of friends and family who understand what you are going through can provide a sense of camaraderie and validation.
Who do you usually turn to when you need support?
Richard Camer Member
I usually turn to my wife for support. But sometimes I worry I might be overwhelming her. Anyone feel similarly?
Leslie Castro Moderator & Contributor
CommunityMember1654 Member
I am officially on the transplant list and have to admit that support is vital and comes in all forms. It's a team effort from the doctors, caretakers, etc right down to family. Speaking to a therapist for perspective helps too.
CommunityMember1654 Member
I hate going to the hospital but I guess you are right sometimes I just need to, to feel better. Symptoms change on the daily though. I know now it's pretty much a waiting game. I need to maintain weight, salt intake and fluid intake. I don't smoke or drink so I'm good. I guess I'm frustrated. I want to do so many things but I'm too fatigued or struggling to sleep or breathe that I just get crazy.
I appreciate this forum. It makes me feel normal. I appreciate both your comments and Leslie's. It makes me feel like I'm not crazy or that I'm not making up how I feel in my head. Thank you so much, the support means so much!
John Bottrell, RRT Moderator & Contributor
CommunityMember1654 Member
Wow, Leslie. Congratulations... 4 years. The hardest years, considering it was Covid. Question: I have been deteriorating faster since being added to the list. It's very frightening. Did you experience that too?
Leslie Castro Moderator & Contributor
After I moved closer to the hospital, my life started to decline even more so. I begged the transplant team to drain the fluid out of my abdomen, but they refused. They felt that diuresis was the best option.
Towards the end, I requested to be admitted because I wasn’t eating, retaining too much fluid, having seizures, being lethargic and just all around didn’t feel good. It definitely was a difficult process from the beginning until a year after the transplant because I had severe complications, which almost cost me my life. However, I am very happy and grateful that I’m alive today to share my story. Wishing you good health. And feel free to ask me any questions about heart failure and the road to transplantation. Leslie (Community Moderator)
Leslie Castro Moderator & Contributor
John Bottrell, RRT Moderator & Contributor
Hi. Thank you for joining the conversation. Glad to hear that the telehealth platform is working well for your father. This is a relatively new platform so it is neat to get updates from people who have used it. You are always welcome here in our community. If you have any questions for us, please do feel free to ask me or one of my fellow moderators/ contributors any time. Wishing you all the best. John. heart-failure.net community moderator