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Discussions: Living with an LVAD

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  • Living with an LVAD
Profile picture for user pugzar571
Michael R.
Living with an LVAD

Maximum distance from a LVAD Certificate hospital

Last activity 1 day 9 hours
Does anyone now what the maximum distances you can be away ( vacation) from a LVAD certified hospital?? My team is very cautious. And as mentioned in yesterday’s meeting they also will not let me drive. I’ve had to many blackouts due to GI bleeds. They actually took me off of warfarin and aspirin...
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James H.
Living with an LVAD

LVAD Daily Life

Last activity 1 day 14 hours
My daily routine: 1. Do a self-check of the controller, check the readings, and check for alarms (low flow and power). 2. Disconnect from remote power; connect to the batteries. 3. If staying-in-the house, use controller bag supplied by the hospital. 4. If going out, use fishing vest purchased from...
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Adrienne H.
Living with an LVAD

Anyone that has an lvad that lives in New Jersey or PA?

Last activity 1 day 19 hours
Hello! im just curious , I’m sure my dad would love to meet other people that also share this experience. I think sometimes it can feel isolating. thanks!
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LeAnn C.
Living with an LVAD

Long-term facilities

Last activity 4 days 12 hours
Hi my brother brother has had an l vad For about 8 years now. Around June he suffered a fall hitting his head and causing him to have a brain bleed, He had to be rushed to Rochester in Minnesota. They removed part of a skull to let his brain swell. He was in the hospital for For 50 days and now he...
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Lee S.
Living with an LVAD

Christmas

Last activity 2 months 3 weeks
Merry Christmas to all those LVAD'ers out there. I hope that Santa is good to all of you!!
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robert W.
Living with an LVAD

Noisy pump

Last activity 3 months 1 week
pump noise Hello I am a new lvad recipient, I had my surgery on September 19 . Everything seems to be going well except for the fact that i can hear the pump running . It is very annoying and I was wondering if anyone else has this issue?
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Cliff C.
Living with an LVAD

Medical Equipment Identifying Embroidered Patches

Last activity 4 months 4 weeks
Something that I've been considering doing is getting a embroidered patch made so that my go bag is clearly marked as medical equipment. I feel that this is important since I actually use a LowePro Camera bag with padded compartments and dual shoulder straps for carrying my spare batteries...
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Gregory D.
Living with an LVAD

Driveline infections

Last activity 5 months 1 week
Lets get to it. The worst thing that can happen to an LVAD user is a drive line infection. It can put you in the hospital many times over and cures with the various antibiotics may or may not work for you. It can lead to extra surgeries for debridement and in some cases make it worse. In my case I...
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Reiss T.
Living with an LVAD

HIP REPLACEMENT SURGERY

Last activity 6 months 3 weeks
I am a 78 year old male LVAD recipient, eight + years out. Generally have been doing quite well but am increasingly bothered by a very painful hip which is inhibiting my activity level and quality of life. I am interested in communicating with any LVADers out there who has had hip or joint...
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Anonymous
Living with an LVAD

Traveling to the Grand Canyon.

Last activity 7 months 1 week
Actually I am a caregiver. My husband is the VAD recipient. We are on a 2 week trip at the Grand Canyon then on to Denver to visit our son and daughter in law. Having a great time. The altitude has reduced his breathing comfort. We are staying on paved pathways and do not plan to hike! At 78 Ned is...
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Bernie R.
Living with an LVAD

Extremely out of breath

Last activity 1 year 1 month
Since my LVAD 33 months ago, I have been on a slow and steady decline. My condition at present is no better than the heart failure condition I experienced prior to my surgery. With any physical exertion I can only last a minute or two before requiring about 5 minutes of rest before another minute or...
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Profile picture for user here for a good time not a long time
Ryan h.
Living with an LVAD

Hope things get better

Last activity 1 year 2 months
I’ve had congestive heart failure since 2015 and had a heart attack 2015 at the age of 35. I received an ICD also in 2015. I had an lvad put in on August 13, 2021. For a year prior to getting my VAD I was in and out of the hospital. Around Christmas 2020 I was in the hospital with a heart rate of...
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Adrienne H.
Living with an LVAD

Anyone have info on places to travel to safely ?

Last activity 1 year 2 months
Hi friends! my father has had an lvad for about a year now, and he has some hopes of traveling. In particular, in Central America. The hospital at one point mentioned if he’d be traveling, it’d be a good idea to have an lvad clinic nearby in whatever place he was venturing, if anything were to...
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Darnazia M.
Living with an LVAD

Lvad surgery

Last activity 1 year 3 months
I am schedule to have my Lvad surgery on 11/30/2021, looking for words of Encouragement. I am a 26 year old female with 2 young children.
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Lori C.
Living with an LVAD

Lvad activities after vaccine

Last activity 1 year 5 months
Hello everyone you helped us soo much with vaccine information so I wanted to reach out to you again. We just made one year with his LVAD! I’m very proud.. it’s been very tough, especially with Covid. What kind of activities do you recommend! Right now my husband walks with a cane. We are looking...
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Lori C.
Living with an LVAD

Has anyone had the Covid vaccine yet who currently has an LVAD

Last activity 1 year 7 months
Hello everyone! I was interested to know if anyone received the Covid vaccine and has an LVAD Can you share your story .. side effects and any advice
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Lisa G.
Living with an LVAD

How do you use seatbelts

Last activity 1 year 8 months
I received my Lvad early March and still just using the bag to hold my batteries etc. How do you use your seat belt to support bag and not disturb your driveline?
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Profile picture for user Bill S
Bill S.
Living with an LVAD

How to rebuild my life? Please help?

Last activity 1 year 11 months
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...
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Dawn C.
Living with an LVAD

New 2021 EMS Field Guides are Here!

Last activity 2 years
/medical-professionals/resource-library/ems-field-guides The 2021 EMS Field Guides are Here! Print QR codes to keep with you so you and emergency services can access emergency information quickly! You can also find them on the MyLVAD app! If you haven't downloaded it yet...Check it out!!
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Jessica Lea D.
Living with an LVAD

Reminder - INVITATION TO PARTICIPATE: VAD WEARABLES RESEARCH PROJECT

Last activity 2 years
https://www.surveymonkey.com/r/VAD-wearables We are currently inviting Ventricular Assist Device patients globally to participate in an online questionnaire about their experience with their VAD wearable systems. The aim of the questionnaire is to research how Ventricular Assist Device patients feel...
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Caregiver Support
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Most Commented

Where are the recent posts, I am scared!!
203 replies
HeartMate III Mens Clothing
108 replies
My Wife Made Me a Wonderful LVAD Vest! Email us…
78 replies
Shower Protection
75 replies
9 years today (20th Oct 2020) living with LVAD
74 replies

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Most Viewed

My Wife Made Me a Wonderful LVAD Vest! Email us…
61,671 views
Discouraged
50,813 views
LVAD supplies--- Who supplies them for you ?
50,409 views
Attitude is Everything
49,518 views
Tactile holster T shirt for carrying LVAD items
43,417 views

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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.
  • LVAD Connection
    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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