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Has Anyone Had A LVAD Put In. I Would Appreciate Hearing From You And Getting Your Experience And Knowledge On What’s Like.

A MyHeartDiseaseTeam Member asked a question 💭
Waukesha, WI
January 29, 2018
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A MyHeartDiseaseTeam Member

Two years ago, I was told I needed one , but blew the metabolic stress test out of the water. I go back to my cardiologist at Columbia Presbyterian on Narch 24. I was asked to bring a potential caregiver. (I live alone.) My EF is between 10-15 and my BP is awful. But, I am asymptomatic for the most part. I’m incredibly frightened of the LVAD and hope to put it off as long as possible. I just finished a oy round of cardio rehab with great results., working up to walking on a treadmill at 3 mph at a 6 incline. Total time on treadmill was 25 minutes. Prayer has worked for the past 6 years for me, but miracles don’t last forever. I hope I can prove again I don’t need the LVAD,….yet.

Update: I went and saw both the pulmonologist and cardiologist at Columbia Presbyterian a few weeks ago. The pulmonologist said that there are always risks, but he would OK surgery for either the LVAD or a transplant if needed.

My cardiologist said he could not recommended me for either procedure at this point….the decision making panel would laugh him out of the room if he did. I am too healthy to be considered for any advanced therapy procedure at this time. He once considered me late stage 3 to stage 4. Now he evaluates me as Stage 2.

I am thrilled beyond belief. Although my EF still stinks (10-15,) 80% of my heart is dead, and my BP is still very low, my symptoms have improved. The occurrences of extremely low blood pressure and dizziness are less frequent. Exercise and push yourself to slowly improve over time. I’m now reaching 3 mph at a 7 incline for the last 5-10 minutes of a 25 minute treadmill session. Be sure to sufficiently hydrate. And, pray. I have a great prayer support group and strongly believe in the power of prayer.

My miracle continues. Six years ago I was told my chances of surviving for a year were 10%. There have been some scares and I realize that this won’t continue forever. We’re all mortal. But, I’m grateful for however long my good fortune continues. . I pray each of you finds and appreciates the miracles in your life, also.

10/25/22 - I went to the cardiologist at Columbia Presbyterian again. He looked at me and shook his head and smiled. He said,"You're amazing! This is the best I've ever seen you look except for the weight loss." (I have always had trouble keeping weight on and am now 5'8",(though I've proably have shrunk) and 125 lbs). I feel good and that's all that matters. I go back to see him again in mid-April. I could not have asked for a better check up.

Keep the faith kids and try to keep smiling. I know it's hard sometimes, but look at all you've gone through and survived. We are all survivors until we're not and then it doesn't matter any more. Keep praying. Hopefully you won't hear from for another 6 months. Merry Christmas, Happy Hannukah ,Happy New Year. Happy Eid al Fitr, and happy whatever else you celebrate. Blessings to you all.

March 15, 2022 (edited)
A MyHeartDiseaseTeam Member

My EF is not expected to change from its current 10-15%. My BP is usually 80’s/60’s and I feel fine. I do have occasional orthostatic issues. I have been down as low as 60/40, but was severely dizzy.
I had a widow maker 6 1/2 years ago with 100% blockage of the LAD or so I’m told. 80% of my heart is scar tissue and no longer works. My doctors are amazed at how well I am. I guess God has something in mind for me. I just wish He’d call or send me an email to let me know what it is.
Thanks for your note. God’s blessings for you, also.

June 15, 2022
A MyHeartDiseaseTeam Member

I currently have an LVAD. For me it is a bridge to transplant. It is a major improvement to my health. I probably would not be alive with out it. For some a LVAD is destination therapy. It should improve and extend your quality of life. Any questions ask. I have had mine over 9 months now.

May 2, 2022
A MyHeartDiseaseTeam Member

Barbanderson you need some say in your diet for water intake. Cardiologists don't want patients to add extra salt or eat a lot of salty food. I don't add any salt to my food and watch my salt intake. After awhile you get used to not using any salt. Things that are real salty I dt even eat. Just try to give you some ideas. Good luck I guess I've been doing this for three years now so I'm used to it.

April 9, 2022
A MyHeartDiseaseTeam Member

Fredric there's really nothing to be afraid of. The lvad gets implanted inside of you and hooks up I your heart to pump enough blood to all of your other organs. You might not realize w now. But. With that low of a EF you difinetly would probably notice the difference. Depending on your age you may be able to get a transplant maybe. I had one for two years. Takes a little getting used to it. You would have a better way of life but they do come with limitations. You will definitely need a caregiver if you get one but they are well worth it. The less the blood flow the more problems you will have. Everyone I know that has one is thankful they have it. If you have any questions feel free to ask me. I have since had a heart transplant. Sometimes I wish I still had my lvad. But it's all good I'm still getting used to everything and all the meds. It's been 10 months since I got my transplant today. Good luck

April 9, 2022

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