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Bill W.
Living with an LVAD

LVAD Implant

Last activity 2 months 1 week
Did any of you get you implant done through the left side ribs?
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Jack W.
Inspiration and Encouragement

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

Last activity 2 months 1 week
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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Roberta B.
Caregiver Support

Involuntary shaking

Last activity 2 months 1 week
My husband experiences involuntary shaking like he had a fever or something. He doesn’t have a fever so I’m wondering what could cause this?
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Arthur c.
Driveline Management

Shower Protection

Last activity 2 months 4 weeks
Hi Everyone, My name is Arthur Canga, I'm from Brazil. My dad got the heartmate 3 this past July and i would like to get a few tips or some suggestions to protect his driveline during the shower. What kind of bandage is more secure to avoid his driveline of getting wet? He is starting to get some...
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Christopher C.
Recipient Support

Low Flow alarms on HeartWare LVAD

Last activity 2 months 4 weeks
Hello, my name is Chris and I have had my HeartWare LVAD for a little over a year now. Life with the device had gone mostly as well as could be expected although I have experienced one problem that is quite a nuisance and was wondering if anyone had some feedback or advice on how to tackle this...
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Mark C.
Equipment

Heartware Batteries

Last activity 3 months
We have Heartware battery charging station & 6 batteries, like new, only had 6 months. If interested, contact me.
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Judith M.
Equipment

Heartmate III

Last activity 3 months 1 week
I should have added that we have the new, unused shower bag, as well as the clothing and charging gear.
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Jessica B.
Caregiver Support

Trauma around driveline @ 5 days post-op!!!

Last activity 3 months 1 week
My husband received his Heartware lvad on Oct 1, 2020. (Stemi heart attack Aug 4, 2020) Monday, (10/5/2020), two nurses & my hubby set off out to walk a few 'laps' around the cicu wing. Having previously walked behind a different 3some on Sat & Sun, rolling his chair directly behind them in case he...
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Judith M.
Equipment

Heartmate III Equipmet

Last activity 3 months 2 weeks
My husband received a heart transplant on September 15, 2020. He had had a Heartmate III Since October 1, 2019. We have nearly a month's worth of dressing change kits from OrthoDynamics, a wall unit, a battery charger and 4 batteries, 2 LAVD shirts and a waist band for sleeping. I would like to give...
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Maureen R.
Caregiver Support

Ischaemia

Last activity 3 months 2 weeks
My husband had his LVAD op October 2017 10 days later he developed bowed ischaemia and had life saving surgery again, he had bowel resection and an illeostomy. He is lucky to have survived. Now over year later he has had drive line infection, regular low magnesium and potassium also, he looses fluid...
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Bernie R.
Living with an LVAD

Should I need a walker

Last activity 3 months 3 weeks
Received my LVAD March 2, 2019, and can not walk any distance without a walker. I truly thought I would be able to function without it, but that has not been the case. I get very short of breath walking without the walker, but can walk a long way with it. Anyone have the same experience?
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Mike S.
Congestive Heart Failure

Pain in Heart

Last activity 3 months 3 weeks
I got my LVAD in 2015 and haven't had any problems with it. Just over the last few days, I've been getting pains in my heart, mostly when I'm tired. In the evenings, there is a pressure in my heart that sometimes increases to short stabs of intense pain. It seems to be increasing. Does anybody else...
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Osman A.
Caregiver Support

How to measure the blood pressure of an lvad patient?

Last activity 3 months 3 weeks
Hello everyone. My mother has been having LVAD for 6 years. We cannot measure his blood pressure in any way, sometimes it can be measured on the monitors in the hospital. There is a thrombus shortage in both the pump and the default. For this reason, we want to observe the blood pressure in some way...
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ulric k.
Caregiver Support

perfume

Last activity 3 months 3 weeks
WOODY SMELL is a masculine woody perfume for contemporary men, the notes include white spruce, amber, musk, violet leaves and blossoms, aquatic accord, woody vetiver and cedar.
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Sara T.
Equipment

Electrical outlet concern

Last activity 3 months 4 weeks
RE: someone was worried about the elec cord disconnecting. We found an inexpensive item at the hardware store called Plug Lock that prevents accidental u plugging. The only negative is that in a fire or other emergency, you would have to unscrew one screw that holds it in place.
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Linda H.
Caregiver Support

CAREGIVER ADVICE FOR SOMEONE WHO'S "GIVEN UP"

Last activity 4 months
My significant other had LVAD implantation last year in May. Before he had the surgery his heart function was at 15% and he had prepared himself that he was going to die. His children and I talked to him about pursuing LVAD surgery and he seemed receptive. We went to Mayo and they said he would be a...
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Sophie F.
Research Participation Opportunities

LVAD Adaptive Bra Concepts

Last activity 4 months
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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Lino M.
Financing and Insurance

Medicare Advantage vs Medigap/Supplemental

Last activity 4 months
Hello everyone, my father received his LVAD approx 2 years ago. He qualified for SSI Disability and will finally be covered by Medicare next month. He is still under 65, so the prices for Supplemental and Medigap coverage are unregulated and ridiculously expensive. We don't qualify for a plan under...
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Stan C.
Driveline Management

UV Light Sterilization

Last activity 4 months 1 week
Does anybody have any experience or knowledge about using UV lights for driveline sterilization/disinfection? Saw an old post which referenced using a UV light from Amazon to disinfect the area around the driveline where it enters the body before applying sterile bandage. Tried to do some research...
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Matthew B.
New to LVADs

Monthly out of pocket cost for LVAD patient

Last activity 4 months 1 week
Good Evening, So I am assuming that most patients here are on medicare medical insurance. Can anyone share what the monthly out of pocket cost are for someone who has an LVAD unit? Hospital staff is not really giving me a straight answer. Should be pretty straight forward. Anyone have any financial...
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Facebook Groups

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    MyLVAD
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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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