Skip to main content
EnglishEnglish
EnglishEnglishDutchDutchFrenchFrenchGermanGermanItalianItalianJapaneseJapanesePortuguesePortugueseRomanianRomanianRussianRussianSerbianSerbianSpanishSpanish

User Menu (Anonymous)

  • Login
  • Register
  • Search
Home

Main navigation

  • Patients and Caregivers
  • Medical Professionals
  • Log in
  • Register
  • Search

Main navigation dropdown patients and caregivers

  • Learn about LVADs
    • Congestive Heart Failure
    • Intro to LVADs
    • LVAD Technology
  • LVAD Lifestyle
    • Living with an LVAD
    • Emergency Field Guides
    • Video Library
    • Available Resources
    • Fellow "VADER" Recommended Accessories
  • Caregivers
    • Caregiver Support Forum
    • ENABLE Caregiver Guides
    • Expert Sessions
    • Other Support Resources
  • Discuss & Connect
    • Events Calendar
    • Community Forums
    • Community Blogs
    • Online Support Group
    • Stories
  • Locator Maps
    • Hospital Map
    • Community Network Map
    • Download the MyLVAD App

Main navigation mobile

  • Patients and Caregivers
    • Learn about LVADs
      • Congestive Heart Failure
      • Intro to LVADs
      • LVAD Technology
    • LVAD Lifestyle
      • Living with an LVAD
      • Emergency Field Guides
      • Video Library
      • Available Resources
      • Fellow "VADER" Recommended Accessories
    • Caregivers
      • Caregiver Support Forum
      • ENABLE Caregiver Guides
      • Expert Sessions
      • Other Support Resources
    • Discuss & Connect
      • Events Calendar
      • Community Forums
      • Community Blogs
      • Online Support Group
      • Stories
    • Locator Maps
      • Hospital Map
      • Community Network Map
      • Download the MyLVAD App
  • Medical Professionals
    • Essential Resources
      • Available Resources
      • Medtronic Resources
      • Abbott Resources
      • EMS Field Guides
      • Policies and Procedures Library
      • Hospital Support Center Listing Request
    • Discuss & Connect
      • Conferences and Continuing Education
      • Events
      • ICCAC Website
      • MCS Collaboration Group
    • LVAD Coordinators
      • Hospital Locator
      • VAD Coordinator Registration
      • Take our Survey
  • Log in
  • Register
  • Search

Patients and Caregivers Forums

You are here

  • Patients and Caregivers
  • Discuss & Connect
  • Patients and Caregivers Forums

Log in or register to post new content in the forum.

Profile picture for user ellencrutsinger@gmail.com
Ellen E.
New to LVADs

Hospitals

Last activity 7 hours 20 minutes
My husband is going to have LVAD surgery. We began this journey at UTSW in Dallas hoping for a heart transplant. The transplant was not approved due to age and other health conditions. UTSW did approve him for LVAD surgery. He has also been approved for an LVAD at Baylor Scott & White in Fort Worth...
  • Log in or register to post comments
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...
  • Log in or register to post comments
Profile picture for user Kverissimo
Kevin V.
Caregiver Support

HELP !!! HOW DO WE FIGHT FOR MORE REHAB ?!?!?

Last activity 1 day 13 hours
Hello all, first off thank you for being here ! My girlfriend and I are the primary caregivers of her 50yr old father who just recently received his LVAD. We understand thats a big undertaking and we are totally down for the job. We / he has had a few bumps along the way but i think we are finally...
  • Log in or register to post comments
Profile picture for user hilleyja
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...
  • Log in or register to post comments
Profile picture for user adriennehabe
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!
  • Log in or register to post comments
Profile picture for user broyal
Nancy C.
Recipient Support

This community needs more resources, help and input

Last activity 2 days 3 hours
This comment is great for first timers going through or about to go through surgery. It's great for getting answers to some quick questions and for getting support in times of fear of the unknown. But, this community really needs support from medical professionals. It needs to have moderators and...
  • Log in or register to post comments
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 days 8 hours
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...
  • Log in or register to post comments
Profile picture for user Cklymec
Candace K.
Clothing Options

LVAD Tshirts to give

Last activity 2 days 11 hours
Hello, I have 9 LVAD tshirts that I would like to donate. 7 are white 2 are black all size Mens XL. Please let me know if you or someone you know could really use them. I know they are pricey!
  • Log in or register to post comments
Profile picture for user Leenerd2002
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...
  • Log in or register to post comments
Profile picture for user sophielee
Sophie F.
Research Participation Opportunities

LVAD Adaptive Bra Concepts

Last activity 1 week 1 day
Hello Everyone! I am a product design student at the University of Cincinnati with a friend who has an LVAD. Since witnessing her experience as a young 20 year old living with an LVAD, I have been inspired to do my thesis project on trying to address some of the frustrations and pain points...
  • Log in or register to post comments
Profile picture for user atsupplyco
Jack W.
Inspiration and Encouragement

9 years today (20th Oct 2020) living with LVAD

Last activity 2 weeks
Nine years ago today, Prof Phil Spratt and the wonderful, dedicated Heart team from St. Vincent's Hospital in Sydney (Australia) inserted my Heartware LVAD and consequently extended my life another 9 years to date. I have been very fortunate to have used this time wisely and to the maximum with...
Profile picture for user atsupplyco
  • Log in or register to post comments
Profile picture for user 4510mike
Mike D.
Driveline Management

What to do about chest hair around Driveline?

Last activity 2 weeks 2 days
Hi everyone, my name is Mike, my LVAD was implanted September 27th 2022. So far so good. I am getting stronger by the day. Do my 2-3 mile walk every day and go to Cardiac Rehab. I am playing golf every Saturday. My only issues are a daily bout of double vision which lasts about 15 seconds and some...
  • Log in or register to post comments
Profile picture for user nik5252
Nicole B.
Caregiver Support

Reliance on caregiver

Last activity 1 month
My husband is likely getting an LVAD this week. He has cardiomyopathy and is only 40 so they want to put off a transplant as long as possible. The more I read about LVADs, the more I hear of numerous complications, recovery issues, and the amount of care the caregiver must provide in the months...
  • Log in or register to post comments
Profile picture for user Kristi
Kristi W.
Equipment

Equipment donation

Last activity 1 month 1 week
My mom had an lvad and she passed away. I have a bunch of equipment I would rather donate than just getting rid of. I would love to hear any ideas. I can send pictures if needed. Email me. Klwatk2@gmail.com
  • Log in or register to post comments
Profile picture for user marcan74
Mary C.
Clothing Options

Heart ware lvad shirts

Last activity 1 month 1 week
My husband recently passed away. I have 4 lvad vest shirts (3 black, 2white, size medium). They work really well and are comfortable with a Heartware lvad. I would like to donate them since I know they are costly to buy.
  • Log in or register to post comments
Profile picture for user Giants17
Lee S.
Driveline Management

Driveline Port area rash

Last activity 1 month 1 week
Been dealing with a rash around the port area. Port is not infected. My skin can't take anymore adhesive. Wondering if anyone has experienced this situation. Any help or suggestion would help!!!
  • Log in or register to post comments
Profile picture for user shortstp78
Juanita P.
Medications

Entresto

Last activity 1 month 2 weeks
Hello Everyone again, i have a Heartmate II for almost 3 years now. Not a candidate for transplant, too healthy,, antibodies too high. However, the Dr. wants to put on entresto and continue on coreg to possibly remodel the heart and bring up the EF. There is more information, but no need to bore you...
  • Log in or register to post comments
Profile picture for user rlouis1439
ron l.
Medications

CoQ10

Last activity 1 month 2 weeks
Does anyone have a history of taking the supplement CoQ10? I was reading an interesting study from the American Heart Association: Coenzyme Q10 and Heart Failure A State-of-the-Art Review
  • Log in or register to post comments
Profile picture for user adriennehabe
Adrienne H.
Clothing Options

A neat new way of carrying batteries!

Last activity 1 month 2 weeks
My father just purchased this small backpack at Walmart, and he is excited to share that he loves carrying his batteries this way! Perhaps someone handy with sewing bags could really make something like this super lvad friendly. He’s very active, and said that having the batteries off of his mid...
  • Log in or register to post comments
Profile picture for user Kim Biondo
Kim B.
Financing and Insurance

Coping with Reality

Last activity 1 month 2 weeks
How do others do it? My husband had a heart attack end of January 2022 and received an LVAD on Valentines Day. He is home and going through cardiac rehab but because there was a head injury, injury to femoral artery and now he has neuropathy in his feet bad, he can't work again. This was supposed to...
  • Log in or register to post comments

Pagination

  • Current page 1
  • Page 2
  • Page 3
  • Page 4
  • Page 5
  • Page 6
  • Page 7
  • Page 8
  • Page 9
  • …
  • Next page ››
  • Last page Last »

Topics

Caregiver Support
Research Participation Opportunities
Clothing Options
Congestive Heart Failure
Diet
Driveline Management
Equipment
Exercise and Physical Activity
Financing and Insurance
Inspiration and Encouragement

Pagination

  • Previous page ‹ Previous
  • Page 1
  • Next page Next ›

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

Pagination

  • Previous page ‹ Previous
  • Page 1
  • Next page Next ›

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

Pagination

  • Previous page ‹ Previous
  • Page 1
  • Next page Next ›

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.

Do you have the MyLVAD Hospital Locator App?

  • App Store
  • Google Play

Footer menu

  • Refer a friend
  • About MyLVAD
  • Contact Us
  • Community Forums

Bottom menu

  • MyLVAD Foundation, LTD.
  • © MyLVAD
  • Legal Conditions

Social Links

  • Twitter
  • Facebook