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Who do you usually turn to for support?

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?

  1. I usually turn to my wife for support. But sometimes I worry I might be overwhelming her. Anyone feel similarly?

    1. Thank you for sharing! I can definitely empathize with you because when I was married and in heart failure I felt the same way. Sometimes, I felt like I was a burden because I was unable to do things, but then I realized that I had to focus on the things I could do and go from there. Unfortunately, I didn’t receive the support I needed from ex-spouse, but instead I had and still have wonderful support from my family and friends. Support is definitely a key for mental and physical health going through heart failure. Leslie (Community Moderator)

  2. 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.

    1. Thanks John. I'm just tired of always feeling tired. My mind and body are not in sync right now and it's frustrating. I have a young family and want to be there for them and it kills me that I can't always be there because I'm tired or not feeling well. I'm usually very positive but lately have been a bit of a 'Debbie Downer'. I know I must rest but sometimes I feel like there is only so much I can rest for. I am used to a very fast paced, active lifestyle. Now I'm barely able to do anything physical and mentally while I am capable I tire easily which means I can't use it effectively.

      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!

    2. You are welcome. Glad you appreciate the forum. It's also neat to know you are not alone in going through this. If there is anything you need, please feel free to reach out to me or one of the other moderators/ team members. Wishing you all the best. John. community moderator

  3. 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?

    1. Thank you for asking. I had a very mixed set of emotions due to the fact that I was being evaluated for a heart and a liver transplant however, the area I was living at the time wasn’t capable of undergoing a heart and liver transplant on a single ventricle or half a functioning heart patient. I was angry at first because I was denied a heart and liver transplant in the DC area and for the fact that I had to basically give up everything in order to relocate near a hospital that did dual transplants on patients such as myself.

      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)

    2. Hope you are doing well. And hopefully you received your lifesaving organ or are very close to receiving your new heart soon since you’ve been added to the list. Keep us updated. Leslie (Community Moderator)

  4. 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. community moderator

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