Patients and Caregivers Forums

Is anyone struggling with eating? Since coming out of hospital, may this year, my appetite has really gone. I hope it will come back in time because I love my food normally. I am worried as if I don’t put any weight on I won’t be able to have a transplant in the future. Emma

Hello LVAD Family, I hope you all are reading this in the best of spirits. Just felt like uplifting someone day and to let you know that you are NOT ALONE! I know things get hard, you get sad, you get depressed and you may even want to give up but please please stay in the fight! Continue to put one...

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...

I asked my husband who has a Heartmate 3 to dig out ten old t shirts he will still wear. THis is all he used to wear so he is comfortable in them. Then I got donations of old t shirts from our children and cut them up to make pockets to go on his old t shirts. I sew two pockets under the arms and...

Does anyone here do their own INR testing at home. If so how did your team approach it, does the tester work well and what brand if tester do you use. Getting lab work is expensive with the co pay and I am personally sick of being a pin cushion lol Thank you for any help.

Hello, does anyone know of a nurse or where I can go for a dressing change in Corpus Christi, TX? I am traveling there soon for a couple of weeks and will not have my caregiver with me that does my changes. Any help is appreciated!

Has anyone been told their Heart Mate 3 LVAD impeller is striking the base plate causing super low flow conditions with alarms, hard chest thumping, stiff back neck, severe light headedness, blurred vision, eyes super sensitive to light, and sometimes a strange numbness in the chest? Have you ever...

Does anyone miss not using a vacuum cleaner? How do you take care of carpeting without one? Any suggestions besides having someone else do it?

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...

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.

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

I have an LVAD Heartmate III Holster Vest, Medium Thoratec Heartmate GoGear Holster Vest. New, only tried on. I found the medium to very small, not realizing that it was a medium. I am a 3X...Needless to say, It has not been worn. Asking $80.00, will ship for free. (Tried to load Pic's but they are...

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...

My father just purchased this small backpack at Walmart, and he is excited to share that he loves carrying his batteries this way! Perhaps someone handy with sewing bags could really make something like this super lvad friendly. He’s very active, and said that having the batteries off of his mid...

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...

Is this website supposed to be a social site or an experiment for doctors or researchers to get information from our discussions?

It sometimes shows "prospective patient" under my name when I post. I have an lvad. How do I change this title? Thanks.

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...

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...

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...