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MyLVAD A.

What are the biggest adjustments?

After having the device implanted, what were some of the bigger day-to-day adjustments did you have to make?

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Richard O.

Initially you could not shower so that was a big welcome when you were able to ahve a shower. I think you had ti more planned each day, batteries, extra contoller, carrying your bag everywhere you went and making sure you recharged those batteries each night. It took a while to get use to the tether you were on, but you haver to become resourceful and make it happen!

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MyLVAD A.

Rovergo,

Thank you so much for coming and contributing to the site. We are working on the ability for you to edit your posts. Stay tuned and we should have that rolled out shortly. Thanks again!

- MyLVAD Admin

Update: as of 9/22, you can now edit your posts!

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Dave C.

The most frustrating was NOT the showers... they were kind of interesting. It was not the stares or hidden stares by people seeing you all wired up. It was not the curse of having someone "baby" or in my case "DAVEY" sit me.

No the worse thing was trying to deal with the massive amounts of pills. Taking them was easy, making sure you don't screw up was the hardest. I was up to like 40 some pills a day... it was frustrating.

When I got the New heart, they taught me about the numbering system. You put a number on every bottle, that corresponds to an Excel Spreadsheet. That way you just went down the list and filled in the pill box. It worked good. But then again my brain came back to full functionality after the Xplant. With the LVAD, you definately improve, but the new heart put me at a total different level of intellectual curiosity an retention. ( My memory improved so much that I have to remind my friends about things. )

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Melody T.

So great to hear from DTSinIdaho! Wonderful that you are doing so well! When did you have your transplant? I handle all the pills for my husband Jerry using Mymedschedule.com which has been so helpful in managing the pills. A nurse recommended this site, it is so easy!

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Michael W.

I have a little bit of a memory problem, but it's not too bad. Not being able to shower is probably the most frustrating part, as far as the LVAD goes.

I don't mind going out in public, like I figured that I would. I look at it as the LVAD is my life, and if people don't like how I look wearing it, then that's there problem (not trying to be a smarty about it, but it's my lifeline that I'm wearing). Surprisingly, I explain what the LVAD is quite often when I go out, but I don't mind explaining it at all. At least if I explain it, then it cuts down on the staring.

(I keep waiting on the time that I walk into a bank and someone hit's the holdup alarm. lol)

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Tania H.

everything is really hard to adjust to, but I think the biggest thing for Rob is people staring. We don't care cause we know thast its whats keeping him alive, but it still bothers us. That and the lack of support in this area. He is the only person in northeast VT, perhaps all of VT, with one of these. The nearby hospital knows hardly anything. They are working on it, but its really rough living up here when nobody knows what an LVAD is.

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Larry D.

well the one thing for me was getting back to road racing and back road runs with out getting to excited and feeling like my heart was pumpiing to fast. I can now hit 110+ on a straight and want to go fastewr but I am still building my car. I am so happy to be able to be alive and able to hit a twisty road and go at it.

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pdgolden

Yes, people are funny and do stare. I bought a t-shirt and some material paint and wrote "Ask Me About My LVAD" People love to hear my story and love to hear about the LVAD and what it has done for me. You know the ones that stare really do like to hear about the LVAD. It's such an interesting piece of equipment and what it does that I enjoy telling them all about it. We live in a lake community on a mountain quite far from the hussle and bussle of a large town. I have spoken to various groups and told the story of the LVAD and how I came to get one.

I feel the more people know about the LVAD the better it is. I have even spoke to patients waiting for the LVAD or thinking about one. We do have a support group that meets 4 times a year in Oklahoma City and the group support is wonderful. Plus you feel like your not the only one and we help each other with small problems. For all those of you who are like me, hand in there and everyday gets better and better.