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I had my LVAD placed in me on June 1st 2017. I got the new Heartmate lll, while they were in there they realized my right side of my heart was in very poor condition so they waited until July 19th to put in the RVAD. In between those surgeries I had major complications, they ended up opening my chest a total of 4 time within that time frame. Was in a coma for 16 days, very confused on what happened to me. I couldn’t talk, I couldn’t walk, stand, eat....,I couldn’t do anything! They had put a trach in while I was sleeping. They had me on an ice bed due to fever, my chest was still wide open due to my organs that swelled so bad! It was a complete nightmare....literally! I spend 70 days in ICU then another 20 days on the transplant floor! I fought so hard, I surprised the doctors just by still being alive!
This whole process has been one giant roller coaster ride. On the list for transplant, then numbed down, then numbed up again....thank God! I am mentally struggling right now trying to keep it together so my loved ones aren’t so scared. They are having a hard time finding me a heart also because of time. I have 2.5 hour surgery to remove both VADS plus my defibrillator.
Can anyone give me some advice on keeping myself together and not lose my mind!!!! Thanks!
Rachel
Replies to "I had my LVAD placed in me on June 1st 2017. I got the new Heartmate..."
@buckeyegurl, Rachel, Here are the stories of 2 heart transplant patients. Beki and Jasmin share their journeys. Click on the link to go directly to their stories. Rosemary
https://connect.mayoclinic.org/newsfeed-post/meet-beki-rare-heart-liver-transplant-gives-south-carolina-woman-a-second-chance-at-life/
https://connect.mayoclinic.org/newsfeed-post/meet-yasmin-a-sudden-detour-for-heart-transplant-then-back-in-stride/
dear buckeyegurl, wow! what a story. just could not stop reading. you are very descriptive, easy to understand but again, what a story. you went through. this is a story that should be read for anyone who will be going through what you went through. it would help the person to somewhat understand what they are going through and take away some of the fear knowing others have also experienced this. wow again. i think this story should be read. thank you, peach barbara
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@buckeyegurl, Hi Rachel. I want to welcome you. I believe that you have come to the right place to find some support. You certainly are on a rollercoaster ride, and I can almost feel the fear and the mental struggle that you are experiencing.
Rachel, I am a liver/kidney recipient so I do not know much about the procedures that you have experienced. However I have experienced the confusion and the fear that are associated with waiting and hoping in the midst of the unknown. And I get chills all over my body when I recall the rollercoaster journey.
I share Kanaaz's invitation to visit the Transplant group. Then you can either join into a discussion, or you can begin a new discussion- I will help you with that.
I am looking forward to meeting you there.
Rosemary