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pattymartin
@pattymartin

Posts: 1
Joined: Oct 26, 2017

LVAD

Posted by @pattymartin, Oct 26, 2017

I was diagnosed with viral cardio myopathy 17 yrs ago with an ejection fraction of 10%, at which time I was implanted with an AICD. 3 yrs. ago I was implanted with an LVAD, with my heart enlarged at 10 cm. and am now awaiting transplant. I try to stay positive and visit and talk to other patients. I am a patient of Ochsner Foundation in New Orleans. Anyone who is interested or has any questions about the LVAD can chat with me. It was the best decision that I and my doctors have made.

REPLY

Hi Patty, glad to hear your satisfied with your treatment plan. That’s rare these days!! Tell me about Oschner. I took my mom there in 1996, and LOVED it then. We lived in Florida, but drove over to NO especially to take her to Oschner. They admitted her to the hospital and kept her there about a week while they ran all the tests. A team of doctors developed a treatment plan for her, and I was very happy with the whole process. She had CHF. I have CHF also, I go in and out of aFib, have a pacemaker/defibrillator, am on Eliquis, etc. I live in Tyler, TX and my doctor here has me as s candidate for the Watchman device. I would love to come over and be evaluated, but am wondering how they do things now. Since it is s 7 hour trip, I can’t come over every few days just to see a doctor or have a test done. But if they could get everything checked out at once, that would be great. Do you know how they would do that??

Thanks,
Billie

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

Hello Rachel @buckeyegurl,

I simply can’t imagine all that you’ve been through, and I’m so glad you’ve reached out to Connect!

First, I’d sincerely encourage you to view the Transplant group on Connect, and if you wish, post any questions you might have about heart transplant tin that group:.
https://connect.mayoclinic.org/group/transplants/

Mentor @rosemarya, has been a special part of the Transplant discussions for a long time, and has shared some wonderful tips on how to stay positive during those difficult pre-transplant times. You can read her story here:
https://connect.mayoclinic.org/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

I’d also like to introduce you to @bryans, @chipmunk16666 as they have written about their experiences with LVADs, and I hope they will join in with their insights.

@buckeyegurl we look forward to getting to know more about you. What has been helping you the most, while waiting for the heart transplant?

@buckeyegurl

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

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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

@buckeyegurl

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

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@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/

Hi Rachel @buckeyegurl
Wow! You have been through so much already! My father received his heart transplant in July 2017 after being on the list just under 2 months. He was very fortunate not to have a long wait. There is still much anxiety and high emotions during the wait. I can’t speak for him on how he felt but as his daughter and primary caregiver I was more concerned with him and his stress than my own. I was determined to stay strong for him and I would worry about myself later. I feel this is still the case close to five months post transplant. I think (at least for me) you need to allow yourself to express your feelings and fears to your family. Then, stay strong, have faith and know that after the transplant and the recovery life will be great! Hang in there, will be thinking of you! 🙂

@buckeyegurl

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

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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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