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Profile picture for user Steven Hood
Steven H.
Tips and Tricks

Clothing

Last activity 2 years 7 months
I just can’t afford $80 to $120 for shirts to carry batteries and George(yes, I named my system controller). I bought package of iron-on Velcro, which cost $6. I took T-shirt’s and cut 3 inch hole. This is plenty wide enough to push controller or even battery through. I then bought fly fishing vest...
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Profile picture for user Janetteallen@mac.com
Janette A.
Caregiver Support

International power adaptor

Last activity 2 years 7 months
Has anyone done international travel with their LVAD? We are planning a trip to England and have purchased a travel adaptor for the power supply. We are wondering if anyone has had any experience with this.
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Profile picture for user Janetteallen@mac.com
Janette A.
Caregiver Support

Game Changer

Last activity 2 years 7 months
I would like this to respond to Cat S who says she is scared. I would like to send a few words of encouragement to her. My husband received an LVAD II nearly 6 months ago. Prior to that, he had had 3 cardiac arrests outside of the hospital with a 1:1,000 chance of survival, so we feel very blessed...
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Carolann A.
Recipient Support

New LVAD person soon

Last activity 2 years 7 months
Going to have a right heart cat done, and was told to pack my bags, went to go see the heart Doctor, ; Dr. Andrew Sauer, sounds want to stay for a while and that my kidneys are starting to shut down, has anyone been through something like before? New and a little unsure and just a little bit afraid...
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Profile picture for user lorac328
Carol D.
Recipient Support

LVAD Clothing

Last activity 2 years 7 months
To anyone interested if you have a "Heartmate 2", You can find a very comfortable undershirt to wear to carry you equipment under your clothing @ www.lvadshirt.com. It comes in Black or White with a short sleeve, or sleeveless. They have a fit for Men and Women. Shipping time is quick For those with...
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Profile picture for user dawnchristensen
Dawn C.
Stories

Tell us your story!

Last activity 2 years 8 months
YOUR STORY is important! We want to hear it and we hope others can learn from it too! Upload a video, audio segment, or write your story here. We want to add your journey to our stories page for everyone to see! Select "New Post" above and tell us all about you!
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Profile picture for user jaydeneedsaheart
jayde k.
New to LVADs

Jayde Share's Her Story

Last activity 2 years 8 months
I am about to tell you a story that still to this moment makes me feel as if I am in surreal dream waiting to be awakened. It started with a cough. A nagging cough that drove me to the minute clinic. They told me it was just a cough that would work itself out. I left and went about my routines of...
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Profile picture for user Meanjean58
Jean C.
New to LVADs

LVAD Work up

Last activity 2 years 8 months
Hello. I am new to this site. I had a week long work up in June to see if I was a candidate for a LVAD at this time. I was told that I am too healthy at this time and the surgery would be too risky. However, my cardiologist said they'd prefer to wait 2+ years to do the surgery, as my blood time is O...
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Profile picture for user JocelynWest
Jocelyn N.
New to LVADs

New LVAD patient coming home soon - anything we absolutely need, equipment-wise?

Last activity 2 years 8 months
Hi friends -- My dad will be returning home from the hospital with an LVAD sometime in the next week, and I'm trying to help him out by purchasing some gear/accessories that will make his life a little easier and more comfortable once he gets here and adjusts to his new equipment. Because of...
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Profile picture for user L_McLemore
Lisa M.
New to LVADs

Wearing my LVAD

Last activity 1 year 7 months
I just got out of the hospital. Had my VAD placed almost 3 weeks ago. Can you guys share tips and hints on how to wear my VAD? I have a Heartware 2. Thank you
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MyLVAD A.
Living with an LVAD

Do you know how to measure a blood pressure - Check out our new video!

Last activity 2 years 9 months
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Profile picture for user PrayForMarion
Kimberly D.
Living with an LVAD

Seeking information about explant for patient who had an ischemic heart attack

Last activity 2 years 9 months
Dear LVAD community, Do you know anybody who has had had their LVAD removed due to improved heart function after the patient had an ischemic heart attack? I am not seeking medical advice, simply information. I am the caregiver to a Heartmate II patient located in Houston, Texas. My husband (the...
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Profile picture for user booboo
Susan H.
Inspiration and Encouragement

Susan Shares Her 5 Years of Success

Last activity 2 years 9 months
Five years today “June 25, 2013” I had my LVAD placed. It is a HeartWare and I have never had any problems at all. Very lucky on that point. Doctors that I have at the University of Washington Regional Heart Center are doing a wonderful job keeping me going. Hasn’t slowed me down much. Grew up on a...
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Profile picture for user Brent
Brenton L.
Clothing Options

LVAD HeartWare Shirts, Vest, Packs and Sleeping Belts

Last activity 2 years 9 months
LVAD Gear has designed a shirt and other accessories just for HeartWare LVADs. The shirt features a double locking controller pocket with a window and locking battery pockets. See the full line of LVAD Clothing including HeartWare and HeartMate specific backpacks, sleeping belts and a selection of...
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Profile picture for user Mvestal21
Michael V.
New to LVADs

Intro!

Last activity 1 year 7 months
Hi all, I got my LVAD(Heart mate lll) August or 2017. I’ve been in out of the hospital since 2014 after I turned 23. I’ve known about this site since my surgery, my doctors strongly urged me to join but I never did. I guess I’ve just always been afraid to join a support group. My mind would tell me...
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Profile picture for user nlange06
Nichole L.
Living with an LVAD

International Travel

Last activity 1 year 7 months
Hi all! I am new to the community and have a few questions about international travel. My boyfriend (27yoa) had his LVAD implanted about 6 months ago. We just took our first trip from MSP to DC and had no problem with luggage at all (and we flew Spirit!). We took one wheeled carry-on and everything...
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Profile picture for user gldoble57
Gregory D.
Recipient Support

Supplies for your VAD...Yeahh

Last activity 2 years 9 months
Just got this from a company out of Florida that my MCMS team was working with. Continuum They can supply all of your patches, foley anchors, silver foam etc. It is billed diretly to Medicare which is a god send, since I was pushing $450 per month, now I can save what I didn't have to begin with...
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Profile picture for user TackroomFred
Fred T.
Living with an LVAD

LVad questions

Last activity 2 years 10 months
Hi- just figured out how to find & use this site. 2 questions 1-Anyone know what > 12 Means in both Peak & trough??? 2- open you up chest/ sternum Is there a less invasive operation? Thanks
Profile picture for user TackroomFred
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Profile picture for user Gene Clements
Gene C.
Inspiration and Encouragement

Gene's Story

Last activity 1 year 7 months
In September, 2015. I had two (no pain) heart attacks, one while in the hospital. My cardiologist (he had put two stents in me some years earlier) told me that my left ventricle was in bad shape and that I might not live to the end of the year. This scared the hell out of me since I was my wife's...
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Profile picture for user Arthur_Barnstein
Arthur B.
Recipient Support

Fluid Around the Pump

Last activity 2 years 10 months
Hi, I have had my Lvad for seven years. Recently I have developed fluid around the pump they removed one and 1/3 liters by aspiration however after a month it came back. I have had a surgery done at Tufts New England Medical Center in Boston but the procedure was not successful and two months later...
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Medicare and Dressing Change Supplies
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Facebook Groups

  • MyLVAD
    MyLVAD
    1892+ likes
    The Facebook Group for MyLVAD, the leading resource for LVAD patients and their loved ones.
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    LVAD Connection
    566+ likes
    Creating a personal link between LVADers,and their caregivers, with others in the same situation in there own area. A place to post your information so others can connect with you.
  • LVAD Recipients
    LVAD Recipients
    2722+ likes
    Created by Kathy & Ron Spotts of PA. Ron is LVAD recipient August 2008.

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