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Profile picture for user DAmbach
Darlene A.
New to LVADs

Lvad at 80

Last activity 2 years
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 2 years
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 2 years
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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Melissa C.
Driveline Management

HVAD Bandages and Equipment

Last activity 2 years
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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Ross S.
Clothing Options

New active LVAD shirt

Last activity 2 years
I have posted before about a new LVAD shirt for those who want to stay active…..gardening, golf, biking. Check it out on sewnforyoumn.com. There is a new summer option that is shorter with mesh battery and controller pockets. Enjoy life with less aggravation. Ross Stephenson 8/16/2018
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Paula S.
Caregiver Support

Grief support after loss of lvad loved one

Last activity 2 years
I am looking for a grief support group specifically for us caregivers that have lost our LVAD loved one. I’m in the Phoenix area so I’m person groups or online groups would work for me. thanks
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Sophie F.
Research Participation Opportunities

LVAD Adaptive Bra Concepts

Last activity 2 years 1 month
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...
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Adrienne H.
Living with an LVAD

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

Last activity 2 years 1 month
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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Profile picture for user 4510mike
Mike D.
Driveline Management

Driveline exit site

Last activity 2 years 1 month
I got my LVAD 6 months ago. I have had to overcome many obstacles but now I am happy emotionally and physically. My only concern at the moment is my driveline exit. It's worse than it was 6 months ago, particularly the red shading next to the exit point. My caregiver does an excellent dressing...
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James H.
Living with an LVAD

LVAD Daily Life

Last activity 2 years 1 month
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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Meghan R.
Equipment

Heartmate 3 battery charger

Last activity 2 years 2 months
My father received a Hearmate 3 in November, and we have been slowing adjusting to his new life. The battery charging situation causes him anxiety, and he would like to add a second charger. Please let me know if you have one available. Has anyone purchased a charger from EBAY? Thank you, Meghan R.
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Profile picture for user broyal
Nancy C.
Recipient Support

This community needs more resources, help and input

Last activity 2 years 2 months
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...
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Profile picture for user here for a good time not a long time
Ryan h.
Living with an LVAD

Heart palpitations maybe

Last activity 2 years 2 months
I’ve been shocked several times. I’ve had two ablations. One last May and one in November. I was wondering if anyone ever gets the feeling that their heart is racing, palpitations, heart feeling strange when urinating at times. Every time I feel anything I go into a panic. My doctors say I’ve got...
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Kelly S.
Equipment

Shower Bags

Last activity 2 years 2 months
I have two brand new shower bags love to offer them to anyone in need of them.
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Manuel H.
Living with an LVAD

Needing Dentures, having a concern....

Last activity 2 years 2 months
Can an LVAD patient have laughing gas as a way to remove teeth prior to dentures?
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Profile picture for user pugzar571
Michael R.
Living with an LVAD

Maximum distance from a LVAD Certificate hospital

Last activity 2 years 2 months
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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Profile picture for user Cklymec
Candace K.
Clothing Options

LVAD Tshirts to give

Last activity 2 years 2 months
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!
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Ellen E.
New to LVADs

Hospitals

Last activity 2 years 2 months
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...
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Profile picture for user Kverissimo
Kevin V.
Caregiver Support

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

Last activity 2 years 2 months
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...
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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 2 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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Facebook Groups

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    The Facebook Group for MyLVAD, the leading resource for LVAD patients and their loved ones.
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    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.
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    Created by Kathy & Ron Spotts of PA. Ron is LVAD recipient August 2008.

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