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Bill S. Recipient

How to rebuild my life? Please help?

Sun, 03/07/2021 - 1:48AM

So I have had my LVAD for over 3 years now and thankfully without any major issues. I have been supported by family through this time but unerstandably that is not a long term option and has gone on long enough already. I don't feel comfortable going back to work full time as my energy levels can still turn on me if over exerted and who wants to impose that on themselves for minimum wage? As my health turned in my 20s I lack any career experience past entry level and many jobs open to unqualified people are unsuitable for a man in my position (working in hospitality causes an increased risk of a driveline infection as an example). I currently live in the countryside but it looks like I'll need to move to a city to access suitable employment (like a sterile call centre). That then comes with it's own financial pressures as well as isolating myself from my support network, it all feels very beyond me right now. I suppose just ranting is beneficial so thank you for reading but I'm hoping anyone can share some success stories of reintegrating back into the world please?

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Alexis S.

Thu, 04/01/2021 - 8:03PM
Have you applied for disability? You usually get approved with an LVAD. In my experience it's hard to have a stable job with an LVAD. Even with my disability payments I still need additional income, I do side deliveries here and there but even that's hard to maintain steadily. Sometimes I have to take a week off and I only work a few hours at the most 3 days a week.
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Sandra K.

Tue, 05/30/2023 - 3:49PM

Hi Bill S., I got an lvad July 2021. I still have issues with energy levels too but find that when I was in a routine of walking 3 times a week I felt like I had more energy. I finished my physical therapy and startes to fall out of that routine and notice a difference in energy levels. Trying to get back into that. Do you do any kind of walking to build up endurance? Maybe start with that and see how it goes. I know it's frustrating trying to get back to ourselves and sometimes it can be overwhelming. I know! I'm living it too. Start small with tasks around the house and build from there. I find that if I keep up with the walking and exercise it helps my energy levels and my frame of mind. Its worth a try. Are there any friends, family, church members, etc in your area that can help you get used to doing things again? Its about 2 years for me since surgery and I still have days where I struggle to get basic things done. Keep in touch here, it helps.

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Victor M.

Tue, 05/30/2023 - 9:19PM

My husband got In LVAD in August 2021 and yes he still gets tired.  He just started to feel a little more energy and started doing some walking and light exercise. It certainly is a challenge and having the support and prayers from family and friends has helped.  

He wants to go on a cruise and we were wondering if anyone has experience with a  cruise?  

 

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Lee S.

Sat, 06/03/2023 - 8:43AM

I'm now into my 20th month. Sandra is right, walk as much as you can wherever you can. I found that walking and exercise is the key. And do apply fo social security disability. I got approved right away. It also helps if you set yourself up retirement. Had a retiree breakfast on Thursday and all of us worked so well together but none of us miss it. The only job I think I could do at this point is driving for someone....auto parts.....flower delivery. Don't really have the vehicle for Uber. I have a Tacoma...lol....climb in....not!! So Victor go on that cruise, get out and enjoy. I just had surgery for diverticulitis on May 3rd. It's been a month today and now only getting back up to par. Went to Scottsdale in May not long after the procedure and now heading to Florida later this month. It's a challenge dragging all  your equipment with you but I've had no problems yet. Only a problem in the Fort Lauderdale airport getting thru TSA. I had a letter from my LVAD team. They were trying to force me thru the detector....I refused and stood my ground and filed a complaint when I got home. Keep your chin up and live each day to your fullest at this point. Don't sweat the small stuff!!

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Sandra K.

Sun, 06/04/2023 - 9:34AM

If you're considering filing for disability, check out the rules for your state FIRST. Some states have rules that say you need to go to certain doctors and not the ones you have been seeing. This is one of the reasons I havent applied. Disability can change things dramatically from doctors to insurance coverage, etc. It can also take years to be approved, depending on where you live. Check things out first before making any drastic changes. ;-).