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Hapahaoli

797d

I am on the list for a heart transplant. But I have no support group where I live at. Has anyone been in that predicament where you have no one you can talk to.

Top reply
    • Lisak

      791d

      Hello everyone with congestive heart failure. I received my Congestive Heart Failure diagnosis’s 4 years ago. I too am on the heart transplant list. My ejection fraction is 5-10% and I have an ICD. I was given 2 years to live almost 3 years ago. The chance of actually receiving a heart transplant is 1 in 10 I have been told. So, I got on line and found the BaroStim implant procedure. I am scheduled to have it in 5 weeks. Please google this procedure. It is very simple and it takes away your symptoms of CHF while we sit and wait. And by the way, I am not going to be sitting if they ever call! I’m going to be out dancing the night away! Well, that is my hope as of today anyway!!! Best to all!

    • Lisak

      791d

      Hello everyone with congestive heart failure. I received my Congestive Heart Failure diagnosis’s 4 years ago. I too am on the heart transplant list. My ejection fraction is 5-10% and I have an ICD. I was given 2 years to live almost 3 years ago. The chance of actually receiving a heart transplant is 1 in 10 I have been told. So, I got on line and found the BaroStim implant procedure. I am scheduled to have it in 5 weeks. Please google this procedure. It is very simple and it takes away your symptoms of CHF while we sit and wait. And by the way, I am not going to be sitting if they ever call! I’m going to be out dancing the night away! Well, that is my hope as of today anyway!!! Best to all!

    • Hapahaoli

      796d

      Good Morning! I had a heart attack May 2020. Had 4 stents put in. December 2020 had ICD placed. February 2021 had a left/right heart cath. EF was 15%. Told to take my pick of the 3 cities in the state I am in for the heart transplant. Moved 863 miles to the city that I picked because I had family near by (4 hours away from transplant hospital). March 1, 2021 after being in the hospital for 12 days of tests, procedures, surgery...I was placed on the transplant list. I also am end stage. Every 3 months I travel 4 hours to see the transplant team and update procedures. I stay in a hotel when I am there 1-2 days that is across from the hospital. I am trying to keep a positive attitude. I get up every morning and do what I can. Get tired real fast. My husband has been a trooper helping around the house. We are now in the process of selling our home and to buy something where we are. We bought a van and having it converted for the wheelchair. I think what makes it hard is that we were active with friends, family (where we lived), hobbies, etc, and when this happened with me...all of that went away. So we basically only have each other. We leave our house here for appointments, pharmacy, groceries, and sometimes just to take a ride.. Do you get out of the house? Don't be afraid of the best. The ICD that I have has never fully charged on me. I do have some activity but the times have been less than 15 seconds they said and I don't feel anything. I follow the doctors orders (meds, diet, chair exercises) to the T. I watch alot of youtube comedians in order to have laughter in my life. I'm here for you also. We may not be at the same stage like you said but we at least can support each other. I basically have decided that I have placed everything in God's hands. I take it one day at a time. Find the laughter...it does help. Have a great day!

    • Mr._Bell

      797d

      Hello. I don’t want to say that you don’t have any support. It may just be the people around you haven’t dealt with what you’re going through therefore they don’t know what to say to you so they don’t say anything to you or have any answers for you. I joined this app feeling the same way. But I had to realize that people can only empathize with you if they haven’t dealt with what you are exactly going through.

      • Hapahaoli

        796d

        @Mr._Bell Good Morning! May I ask what do you do to cope? What works for someone may help another. I have found laughter helps me at times.

        • Mr._Bell

          796d

          @Hapahaoli Definitely laughter. I also found myself writing poetry about how I feel sometimes. I have my days where I’m like “why did this happen to me?” I had a heart attack in January 2004. I thought is was a one and done because I was just overdoing everything and not taking care of myself. This time around I’ve decided to focus on my health issues (physical, mental, emotional and spiritual). What are some hobbies you had growing up? Or May something that you’ve always wanted to do? This is an opportunity to reinvent yourself. That’s what I decided to do.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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