LVAD NOT SO EASY, RECOVERY NOT SO FAST

Sir,

I have so many questions.

My father went through the same procedure, it has been 6 weeks already and he is still in the hospital.

is there any way I may contact you privately, please?

barnuf, I'm a bit reluctant to give you my private email and for some reason I'm going to trust you. I want to help.

i am at

bradjones812@gmail.com

I did that long in the hops then did 2 weeks in rehab bcz my body was so wasted from the inactivity and riding the bed so much.

how old's your father? what precipitated his needing an LVAD? is he eligible for a heart transplant? how old are you, and I ask that for context sake?

ask me your questions and I'll answer for you through the filter of my experience.

b. jones

Dear Brad2hearts - My husband (50) has a similar story to yours - with a 9-week hospitalization this year due to complications (collapsed lung, kidney failure, breathing problems, diabetes, etc). He was very traumatized and swore he would never return. He was home for 10 weeks and almost died twice attributable to medications (1.blood sugar of 20 and I called the paramedics, and 2.exteme dehydration while on diaretics). Well, he is back there now with a massive staff infection in his pump. His incision actually burst open in front of me streaming pus. He was so depressed before this new admission, I shudder to think what will happen when he wakes and finds himself facing another two month stay and recovery from reopened sternum.

I had read your post to him a few weeks back and he cried for you, not knowing how similar his path would become. He has no quality of life on the pump, and now will have to carry a new pump for the antibiotics, not to mention severely malnourished, and inability to walk from atrophy (failed quadruple bypass where they removed his leg veins, prior to VAD emergency surgery). My heart goes out to you - I wish all experiences were happy, ours is not so far - other than for me, I am glad he is still alive. Sir, your original post was a year ago, are things any better for you now?

MJ,

thanks for asking. I am doing better, things a modicum of easier and still nowhere stable and what I would prefer. I guess this is the better of the two choices I had. I have serious limitations, seemingly dictated by my hemoglobin level to which my dizziness and inability to do anything but the barest essentials-- feed, use the bathroom, move slowly from one room to another. I have fallen now several times. I am in an uneasy truce with this whole thing since it is such an imperfect solution to the issues your husband and I face.

I too vowed that I would never go back to be admitted to the hospital. and for the nearly 18 months following my initial hospitalization, I could not keep my vow. I have been away from that place except for doctors' visits since April, 2012.

So now it is my time to empathasize with you and your husband. The thing that kept me going was that I was in a relationship with a woman who was my everything, for whom I got this pump so that I could spend more of my days with her. That kept me going, kept me fighting, just to show those foiks in the hospital that I could do it and leave them in my rear-view mirror.

It is my turn to cry for your husband. And I pray for you both, to clear up these complications and for him [and you at his side] victorious, into the sunshine of more life. Different for sure, not what anyone plans for, expects or imagines. But yours together once again, to share your lives, your love and be grateful that you're still going.

A cardiologist who has treated me in the past, and I think even suggested that I investigate the LVAD as an alternative to fading out and dying in heart failure,, told me that we with VADs are pioneers.

I objected, reminding her that there are 5000 of us in this country.

She responded that the number is 5000 out of a total population of 300,000,000.

Let me know how else I might support you and your husband on this journey which is not at all easy.

blessings and wonder

brad

Brad,

If you look at my profile, you can read about some of my recovery. Although my recovery has not been as horrific as yours, it was not easy. If not for the terrific team at the hospital and a wonderful support group of family and friends, I would have fallen into a terrible depression.

I am also an insulin dependent diabetic. My recovery is slow but progressing. I would not have mentally made it through this without a wonderful wife.

I had to leave my job and don't see, ever, having enough energy to do what I did before. But, I am alive and , as long as I am, I will hope for better.

You don't know my history but, suffice to say, there have been several times I should have died and did not. So, there is a reason I am still here. There is a reason you are still here. try to focus on figuring that out.

Whether you have faith or not, there is a reason for all things.

I have read these stories before about how horrible recovery has been having been though lvad recovery it sucks sure you have to put a lot in especially if you where bad enough to be debilitated for a long time as I was it took a lot of fight to feel better ALOT forcing myself to walk everyday taking meds on time every day doing what ever it took to feel better and the fact is no with the vad life will never be normal but I will say it made my life better ..but if your expecting to feel 100% that's a fantasy at best for most it makes life better to tolerable. Unfortunately for some that's not the case but look at your situation and ask yourself have you put in what ever it takes to help you recover because just letting the doctor put in the vad is certainly not enough theres a hell of alot more involved that doctors and hospitals cant do for anyone I am a diabetic and I have kidney issues so its a constant fight.. Now transplanted is a whole new fight with a whole new set of challenges am I 100 percent NO and I know I will never be but what I am is blessed and that no one can take from me..so I will continue to fight to feel better and do my best to try help others do the same..my god bless you and give you strength for your battle..

Hi, my husband has been in the hospital two months following his vad surgery. My husband was suppose to be the best candidate to come around since sliced bread, but still two months and we are not out yet. His body has wasted away to nothing and he still cannot swallow. This has been a nightmare and I do not expect much better at LTAC which the books did not even tell us could happen. Obviously it is not an infrequent thing to happen, as there are three people in the same shape we are in. I would like to go back two months and forget I ever heard about an LVAD.