Patients and Caregivers Forums

My name is Larrie and I’m Story Producer for a show called Life on Batteries, as well as an LVAD patient myself. I was hoping you could help me with research for an upcoming episode by sharing your experiences around emergency controller changes. This also may be a good discussion topic in itself...

My husband received his LVAD Oct 2016 and although there’s been lots of highs and lows - we are grateful for the time he’s gained and still gaining ! However he has a lot of phlegm (sorry) and respiratory secretions that are getting worse . Has anybody else experienced these symptoms, he’s kind of...

Hello everyone, To have a great website like this can give hope and happiness for alot of people. My husband had his lvad 2 months back. And he have a C-rtd too. Still trying to adjust with his new life style. I have one question, i tried to google it but i couldnt find an answer for it, hopefully...

We seem to have issues with the anchors staying attached to the skin. Yes we clean with alcohol, let it dry, apply the skin barrier, let that dry and it still comes off. We have also tried with it with out the skin barrier after cleaning the skin with alcohol, and they still come off.

Has anyone figured out a comfortable way to get back behind the wheel? There has to be a better way than wearing the batteries on your hips. And how do I change from prospective patient to recipient?

Hi Everyone, I am new to this community but was wondering if anyone had tips about how to stay active while having an LVAD. I am currently looking for helpful advice on how to live a healthy and active lifestyle while managing an LVAD. Thanks!

Hi everyone! My name is Sophie and I am an industrial design student at the University of Cincinnati. I have recently been made aware from a close friend how difficult it is to live a healthy active lifestyle with a LVAD, and am passionate about using my education and resources to help alleviate...

My wife and I first got initiated to our lvad and heart transplant program at Oregon Health Sciences University by meeting the various teams who eventually would be treating me for the end stage of my 17 year battle with heart failure. We live about 100 miles from Portland, where the hospital is, so...

Hello, My dad just got his HeartMate 3 six days ago. He obviously has a long road ahead of him, but I am trying to gather as much info and get things as ready as I can before he comes to live with me. My dad is a jack of all trades - he was a cop, a machinist, pilot, can build anything etc. My...

I have recently 'celebrated' 10 years of living with a Ventrassist LVAD here in the UK The machine's performance has been exemplary' I have heart failure again now so life is not at all easy Only difficulties haves been with obtaining batteries, medication and the weight of the machine itself...

Hello everyone. I am just now beginning to discuss the option on an LVAD with my cardiologist. I have had Dilated Cardiomyopathy for 15 years. Life was a breeze, cruising along at 35% EF, up from 20% at dx. However, the last year has been tough. My EF is now back to 20% and I've been hospitalized...

hi, I’ve had my lvad for 8months, had the surgery in Canada, then I’ve recently moved back to the u.k. I’ve not really met anyone with the lvad, it would be nice to swap stories, tips and chat about living with the device would be nice.

Hi Everyone, I am a RN Care Advisor that does case management for some patients with LVADs and I am trying to learn if anyone started having an increase in fatigue and SOB around year 4-5 with the LVAD and if there were any discussions/treatments/medications etc that improved it? Thanks again and I...

I am preparing for my LVAD surgery next month. Other than clothing, what types of supplies will I likely need to purchase for myself (not covered by insurance)? Are there additional products that people have made your life with a VAD easier that were not mentioned by your medical team?

I am 49 and got my lvad in September 2017, I have been playing guitar since I was 10 . Now the problem is my electric guitar picks up the pump and transmits it through the amp to the point of not being able to play. I don't think there is going to be any solution to this but I thought I would throw...

Does anyone with an LVAD have any experience with a plug-in hybrid vehicle? Any issue with electromagnetic waves?

My wife has had an LVAD for three years. She was recently diagnosed with breast cancer. She had surgery to remove the cancer and is now facing chemotherpy. We are wondering if any other women with an LVAD have faced this challenge.

I am a caregiver and am VERY frustrated with the options for carrying around the backup supplies. We were given a blue bag for this purpose. It has 2 handles on it, but they are too short to be shoulder straps, and the bag is too heavy to carry off the shoulder. The bag has no top to it, to protect...

I'm scheduled for my LVAD on 7/17/18. I have done a lot of research but can't seem to find much about bras. I'm a big breasted woman and worry that the weight of my breasts will pull on the incision and either tear it or at least increase the pain. I've seen special post surgical bras that are front...

Travel is something that we at MyLVAD encourage for LVAD recipients and their loved ones. Information on traveling with an LVAD can be difficult to find. Below you will find an instruction sheet that we created on how to pack the HeartMate II®external equipment in a standard sized carry-on bag that...