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Kathleen S. Caregiver

To get an lvad or not to get an lvad, that is the question

Two years ago my husband who suffers from congestive heart failure was tested to be put on a heart transplant list. He was deemed to healthy. Now we are facing the same testing. I can live with the thought of him receiving a heart transplant. He feels fine right now. No shortness of breath, he golfs once a week. He looks and says he feels fine. The medical facility that he goes to is really pushing having the lvad. I don't believe my husband has done any research but I have done plenty. I am scared to death. He also has a pacemaker and his electrophysiologist says he does not need an lvad. What truly are the symptoms that constitute the need for an lvad. I am not getting any black and white answers.
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Cathie W.

Kathleen,   As a fellow caregiver, I can tell you that I got my husband to the point that he is, with the lvad and on the heart transplant list.  He would always tell me and his doctors "I feel fine."  but the truth is, he forgot what "fine" was supposed to feel like.  The decline was rapid.  You'll know when it's time and his doctors will know.  For us it was CHF with water retention, bloating, loss of appetite, weight loss, dizziness, tired all the time, inability to take the dog for a walk.... (yet he felt "fine".)  The turnaround was almost immediate after my husband got his LVAD; walking laps around the nurses station, then up and down the hall, etc.  Three months in he is a new man.  My point is; don't listen to stoic men who say they feel fine.  If doctors are pushing for it, they know what they're talking about.  My husband went from "No way I'm getting an LVAD" to "thank God I got this LVAD."  

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Dorothy T.

Dear Kathleen,

I agree with Cathie and would add that the doctors are looking at the Ejection Fraction of the heart in addition to the symptoms you have described. There is night and day between pre LVAD and post LVAD. It is life regained.

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Stephen H.

Hi, my lvad was installed 4/30/18.  Up til i decided i didnt feel right the first of April i just thought i needed a tune-up. Go into the emergency room and get checked in and have my water tested to determine if I was carrying too much water in my system. What they found was that my ejection fraction had gone down to 10 and my only alternative was an lvad or a box very shortly. Fortunately my daughter and son-in-law convince me to get the lvad or at least check it out. So that's what I did. Rehab was slow but continuous and now I'm doing most of what I was doing before accept those things that put me in the water. It just keeps getting better!

Steve

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In reply to by Stephen H.

Dorothy T.

The LVAD is truly a bridge to life. Congratulations Stephen and follow all the rules of care. Do not take short cuts with procedures, nutrition or medications. After sixteen months of living on a VAD my daughter’s device was explanted since her heart recovered. It has been a year now and some medications have been discontinued. Be encouraged, those of you who are either on a device or are thinking about it. Although I would never make the decision for anyone else besides my loved ones, I know she would not be alive today without it. For me constant prayer and the device have restored her health. It is a long journey but be encouraged.

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In reply to by Dorothy T.

Stephen H.

Hi, i plan to. Ive wanted to take a shower for so long but has been told to wait so patiently patiently I'm waiting! But I agree my life is so much better post lvad then it was pre lvad! Steve

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In reply to by Stephen H.

Dorothy T.

Hi Steve, you’re doing fine it seems. Don’t worry about the shower, too complicated and risky. Continue with the bird bath until you figure out how to do it better. But don’t skip a day. You may have to use a few bath basins. My patient took her first shower nearly two years later and we celebrated the event. We knew of a patient who showered with an unfavorable outcome. Focus on making daily improvements and the safety of yourself and the equipment. 

May God bless and keep you.

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In reply to by Stephen H.

Maureen G.

My husband had his LVAD put in on  May 7, 2018. He was able to take his first shower.2 weeks ago. He said it was the best shower he ever gad.

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Larry B.

I received my vad 2 yrs ago and was in the hospital 10 days. At discharge I was cleared to shower. I take a shower every morning and have never had the slightest sign of any problems. Actually I did a lot of research on showering and found one article that attributed showering to POSSIBLE infection. Far and above the major reason for driveline infections are from trauma to the driveline, not showering. The major reason many people are not cleared to immediately start showering is because they have had an infection that hasn’t cleared up yet. It really depends on how educated and pro active ones team is. Mine is one of the leading teams in the nation as far as LVADS are concerned. Unfortunately there are a few teams out there that don’t have a clue that don’t let their patients shower at all, ever!