Patients and Caregivers Forums

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...

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?

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...

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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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...

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...

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...

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...

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...

Hello All! My husband and I are moving and came across some extra accessories free to anyone who can use them, I know not everyone's insurance covers. All compatible with Heart Mate 3 Shower bag w/ straps Belt case with optional straps Cross body battery support. He has since been transplanted. Feel...

Hello all, I'm not exactly new to living with an LVAD since I've had mine for two years now, but I'm still adjusting and trying to cope with it. It's a huge change in my life that happened at a very young age. I was only twenty-one years old when I got my LVAD and I've spent two of my birthdays in...

My husband has an LVAD Thoratec HeartMate GoGear Shower Bag. Never opened - still in the box. His doctor won't let him shower so if anybody needs it please let me know. All I ask is that you pay shipping. Thanks and have an amazing day.

My father, who is now 65, has been diagnosed with atrial fibrillation (AF), and has been recommended a heart transplant or an LVAD. We are still in the process of checking if he's a good candidate for either of those, but I would like to know someone's personal experience with either transplant or...

So I have been advised that I need to have an LVAD unit. I have HOCM and have been fighting this heart desease head on since 2014 when I had a Septal Myectomy and Transapical midventricular myectomy at the Mayo Clinic in Rochestor MD. These surgeries were very major but really did not improve my...

My husband is 74 and also destination LVAD. His breathing has really gone down hill, because of dysfunction of the right ventricular , which creates regurgitation of the Tricuspid, thus fluid retention , thus increase Pulmonary disease. He was just at the hospital , Mayo, to see his Team. So for now...

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Hi everyone! My name is Lauren, and I work at Baylor College of Medicine in Houston, TX. My colleagues are the creators of Deciding Together, an LVAD Decision Aid which is intended to educate patients and caregivers and help them generate questions and concerns to discuss with a healthcare team...

My husband received his new heart on June 4th. We have a large amount of supplies to share for the cost of shipping. Please let me know if you have need of any of the following: 2" and 4" gauze 2" and 4" driveline sponge rolls of 2" and 4" medipore tape hibiclens sterile water hair bonnets foley...