LVAD

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, 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, 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! 🙂

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

How old was your father when he got the transplant? What can you tell me about age restrictions?

My dad was registered one week prior to his 71st birthday. He received his transplant two months later (at age 71). I know that once the decision was made to list him, everything moved quickly. He had to be registered prior to turning 71. I'm not sure how old you can be after being registered to still qualify for the transplant. Seems like there would be some restrictions. For my dad, I wish there was more extensive testing due to his age. After transplant he started complaining about his right leg not working. We questioned if he had a stroke during transplant. He did not. It took a couple of years and many neurologists to finally diagnose parkinsonism. He did not match any one form of Parkinson (there are eight different types) so they diagnosed it generically as parkinsonism.
My personal opinion, solely mine, not medically based, but when the recipient is elderly there needs to be more consideration about what is best. Just because he qualified and had a great match, doesn't mean he should have had the transplant. Please don't get me wrong, I am extremely grateful for the gift that was given and the extra time with my dad. However, his extra years were not good. This again was due to the Parkinson, not the transplant. He lived six years post transplant. During that time he was never independent, never golfed again, never walked on his own again and spent the last three and a half years in a nursing home. He never had the quality of life that we had hoped for.
The testing process was rushed and as a family we were excited for the opportunity. We didn't understand the full process and really didn't think about any other conditions he may have had. Looking back I wish he would have had a neuro psych exam prior to listing. This may have revealed the parkin sons sooner.
When it is an older person, more questions should be asked, more test should be completed. We are not looking for another successful transplant, a number, as a patient and the patient's family, we are looking for extended quality of life, not quantity.
I hope this helps you. I want to reiterate, his transplant was a great success, a great match. His problems were from other unknown medical conditions.

Thanks for the information, and I am sorry to hear of the complications with Parkinson's after transplant. I am a person who has a LVAD now looking for it to bridge toward a transplant. Some of the readings I have encountered suggest that at age 70 or above people are usually not candidates for a transplant. This is what spurred my question to you. Any information you can share on this age item will be greatly appreciated.