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Rachael O. Recipient

having trouble with memory and just adjusting overall

Hi my name is Rachael. I had the lvad implanted 8/28/12. Prior to my implantation i had never been diagnsed with any sort of heart disease what so ever. I went to the local hospital to have an injection or ccrtisone. Well from the minute they took me back to do the injection i started having shortness of breathe. over the next several hours my heart just quit. with in 36 hours i was in sudden death. by the 27th they had to shock me 6 sperate times to stope the v tach runs and the last time they had to shock me twice for it to stop. my whole story is much longer thank this NS MUCH MORE COMPLICATED. Needless to say there was no time to be councelled on the effects or really how it would affect my life. besides the fact that i dont really remember much of what was said to and around me then anyway. Needless to say since my discharge from the hospital on 9/19/12, i cry all of the time. i cry because i am scared or over whelmed. Today I have sepnt most of the day crying because i am terrified with this super hurricaine coming and i will be stuck unable to get to power before all of my battereis run out. I am so scared and so anxious that i know i should be grateful to still be here and enjoy life but my anxiety over clouds this. Does anyone else experience this? also, i just cant get used to the drive line and controller and the batteries being new appendages. i will get up from the couch and start to hop up and have to grab them very quickly. Does anyone have any suggestions to relieve some of this stress and anxiety? Thanks, Rachael

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Thomas M.

First of all - everything you are experiencing is PERFECTLY NORMAL!! I cried and cried before the surgery, but I was aware of what was happening beforehand. You didn't get that opportunity. A male LVAD recipient who met with me in the hospital before my surgery told a story similar to yours. Except he was in a coma when the decision was make for him. He woke up to the story of his new LVAD, he said he cried all the time as well. In spite of what all of us tell you, you will discover yourself how normal your life really can be with the LVAD. When your doctor clears you, I strongly suggest you get right into cardiac rehab - it works wonders for your body and your mind. Regarding the equipment, make sure it is always secure so that when you stand, you never have to think about it. I carried mine in a messager bag and I know some women carry it in a purse with a strap around their shoulder. If you have any other questions, feel free to ask. You are going through a life-changing event! That never happens easily. The more you are able to re-establish your routine, the less anxiety you will feel. You'll be fine, you'll do great! I believe in you!

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Ken B.

Well Rachael .I understand a lot of what you said been bit by a Pacemaker defib 10 times before I got to the hospital. It's a fear that hasn't gone away in over a year. As far as the crying I have no answer for that I just keep a roll of toilet paper close by. Life with the lavd is a lot harder than you expect carrying the back up / batteries bag it gets heavy, if you hide it in the car when you run in the store your afraid it will get stolen. Just to let you know your like a lot of us I think/scared and wondering why? My wife left me over the stress and I carry on the best I can. Your in my thoughts and prayers. I'm just too hardheaded to give up Kenny

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Michele S.

Hi Rachael - It's been several months since your initial post - just wondering and hoping that things have improved for you since then? My husband just got his LVAD on May 17, 2013, and similar to you, had no idea he even had a heart condition. Also, he signed up for a triple-bypass but it failed, and so he was unconscious when I and the family had to make this life-saving decision for him. He was in the hospital for 9 weeks, and has been home for 6 weeks tomorrow. Today was the first day he went out of the house (except for required Drs visits). He cries everyday, sometimes all day. Mostly, he hates the equipment. Having lost a ton of weight, he bears the weight on skin and bones, and is scared about what the future holds, and if he will ever feel well. He can't participate in this site, becuase it is too emotionally painful - but I think it gives him solace to know he is not alone in what and how he feels. I hope things are going better for you now, and that you have been able to adjust to your new life situation. I will pray for you. Kind regards, Caregiver MJ

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Carol G.

Hi, I received my LVAD this last April, 2013. Being a woman, I was pretty much devastated when I tried to get around with the cords, batteries and controller. Before I left the hospital, I vowed to myself that I was not going to wear the ugly black vest that was provided by Medicare. I knew there had to be something out there for women to wear. Well, I have not found it. I got busy and have come up with revamping the tank tops and other knit shirts in my closet. When I go back to clinic for check ups the doctors and nurses are amazed. I can wear my skirts, shorts and slacks with no alterations. Most of my jackets fit over the tank tops and hide the batteries completely. I also made fanny pack covers for the controller. I made them all different colors to go with my outfits. You can probably tell I am a clothes hog. But after I got my wardrobe altered, my whole attitude changed. I feel the Good Lord must have wanted me to have the LVAD so that I could come up with something for us women to wear and not be limited in our mobility. I hope you are doing better by now. I still have a few days that I get a little teary but not more than a couple of times a month. It seems like that happens when I am overly tired or overwhelmed about house cleaning, etc. I can say I do feel so much better and have so much more energy than I have had for years. Best of luck and if you need to talk...I got a couple of good ears.