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Profile picture for user Smiley
Angela B.
Inspiration and Encouragement

Enjoy Life

Last activity 18 minutes 28 seconds
I have MyLVAD for almost 4 years. I want to encourage everyone to live your best life do not allow the LVAD to hinder you. Don’t be ashamed to go in public. Of course people are curious and just explain to them and you will be surprised at how understanding they will be and amazed because we are...
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Jack W.
Inspiration and Encouragement

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

Last activity 7 minutes 59 seconds
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...
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Sandra K.
New to LVADs

Where was your driveline site placed?

Last activity 16 minutes 13 seconds
My site is about 2-3 inches to the left of my belly button, about an inch below my waist. The more I talk with people on this website, the more I am thinking there isn't a standard placement for a driveline sute? I was given an LVAD as emergency surgery. I was given a 30% survival chance until I got...
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Sandra K.
Clothing Options

Wearing jeans

Last activity 15 hours 32 minutes
Anyone able to.wear jeans again after lvad? I used to live in jeans but now they seem to press on my driveline site too much. I've basically been living in pajama/lounge pants and getting tired of them. Any suggestions for pants? None of the lvad gear has suited me. I feel like a football player...
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Bill S.
Living with an LVAD

How to rebuild my life? Please help?

Last activity 1 day 2 hours
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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Victor M.
Exercise and Physical Activity

Pat M

Last activity 5 days
Hello LVAD patients and caregivers my husband has been on destination LVAD for almost 2 years. He is pretty stable now and he wants to go on a cruise. His VAD coordinator said it would be okay and we would have to get a letter from them to give to the airlines and ship crew. My question is to find...
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Ellen E.
Equipment

LVAD speed

Last activity 5 days 3 hours
Just wanting to know what is the average speed for LVAD? Doctor said goal was 5300 - 5400. My husband was up to 5200 but drs have decreased it several times. His surgery was May 2, 2023 so he's still in the hospital. Thank you for your input.
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Sandra K.
Living with an LVAD

Dentist?

Last activity 5 days 15 hours
I've been told I need to take an antibiotic before any dental appointments now because of the lvad. But is there anything a dentist or hygienist uses that I need to avoid? (similar to not getting an MRI) that uses magnetic waves?
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Barbara Cole C.
Medications

HIGH PI

Last activity 5 days 20 hours
My name is Barbara, I've had my Lvad Heartmate 3 over 3 years. So far I haven't experienced any major issues thank God! My question is regarding medication sensitivity and high PI's. Can anyone share regarding their experience with medicatons and High PI with Heartmate 3?
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Rumana R.
New to LVADs

Need advice for my Dad

Last activity 5 days 20 hours
Hello! My dad 80 is still in ICU for the last 6 days. He was closed on last Monday. He is still intubated and they are slowly trying to wake him up. They have started nose feeding and has the temp RVAD on. I was wondering if anyone in the group went through the same experience? How long it took you...
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Sandra K.
Equipment

Batteries all the time!

Last activity 5 days 15 hours
I got my LVAD July 2021, Heartmate III. I found that using wall power made me nervous overnight, after the power went out. I find it easier to use batteries day and night now. Anyone else do this?
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Logan H.
New to LVADs

Friends

Last activity 6 days 1 hour
Hello, Im 23 and got my VAD in January. Im looking to connect with people hopefully around my age that understand what is happening and can relate. It’s weird interacting with people who have no idea what this is like, and just wanna make friends that do. Thanks for reading.
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Ellen E.
Clothing Options

LVAD sleep belt

Last activity 6 days 11 hours
My husband just got his LVAD on May 2, 2023. We are looking for some type of sleep belt to hold his controller in place while he sleeps. Does anyone have any recommendations for a product that has worked well for them? Thank you, Ellen
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Phillip M.
Equipment

New Product to Secure Driveline

Last activity 6 days 21 hours
I have always had issues securing the driveline to my stomach using anchors or tape. It always seems to pull off or get stuck on my shirt. I found adhesive patches for insulin arm sensors. Amazon has waterproof adhesives. They flex so if there's any movement of the driveline the entire patch doesn't...
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Victor M.
Caregiver Support

Traveling for LVAD

Last activity 1 week
Can anyone give suggestions on LVAD patients going on a cruise?
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Darlene A.
New to LVADs

Lvad at 80

Last activity 1 week 1 day
My dad is a possible Lvad pt at just shy of 80 anyone else have experience with it at this age would love to hear your experience. It seems overwhelming
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Juanita P.
Medications

Entresto

Last activity 1 week 1 day
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...
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Rennie G.
Patient and Caregiver Forums

Hiccups

Last activity 1 week 5 days
I’ve had my Lvad now for eight months. I have continuous hiccups when I’m sitting but when I’m standing or walking they go away anyone else have this problem? I do use a hiccups straw, but they seem to come back.
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Profile picture for user prairiefox53
Kristine F.
Equipment

Looking for a Heartmate III mobile power unit and cables.

Last activity 1 week 6 days
My husband received a Heartmate III on 3/7 this year. He would like to have an extra mobile power unit and cables to keep in our family room as that is where we do most of our relaxing. Please let me know if you have an extra. We live in the Chicago area.
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Melissa C.
Driveline Management

HVAD Bandages and Equipment

Last activity 2 weeks 3 days
Hello A dear friend of mine has just received and HVAD and will be coming home from hospital within a week. Some ladies and I are working on moving her bedroom downstairs and wanted to setup an area to store all the bandages, equipment and items needed for driveline management. What has been the...
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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

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Most Commented

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

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Most Viewed

My Wife Made Me a Wonderful LVAD Vest! Email us…
61,852 views
Discouraged
51,077 views
LVAD supplies--- Who supplies them for you ?
50,529 views
Attitude is Everything
49,664 views
Tactile holster T shirt for carrying LVAD items
43,486 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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