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MyLVAD_2's picture MyLVAD_2
MyLVAD Online Caregiver Support Group
Wed, 04/11/2012 - 8:40am

MyLVAD is dedicated to supporting LVAD recipients, caregivers and providers; we realize the vital role caregivers have in the lives of LVAD recipients. To help our caregivers, MyLVAD will be starting our first online caregiver support group. This will provide a forum to discuss the ups and downs of caring for an LVAD recipient and to connect with other caregivers.
This support group will be offered on the first Monday of every month at 7pm EST. It will be moderated by Greg Larsh, PhD who is the chaplain for the Mechanical Circulatory Support Program at Penn State Milton S. Hershey Medical Center.
The format for each meeting will be a brief topical presentation followed by open discussion for about 1 hour. Participants will have the option to remain anonymous.
If you wish to participate, please go to and register for our first meeting to be held on May 7th.
For those who are unable to participate, please email so that we can create alternative times for future discussions.

Lia's picture Lia
Wed, 06/13/2012 - 3:30pm

Will you be doing this in July?

puzzleboxs's picture puzzleboxs
Wed, 06/13/2012 - 8:22pm

i am totally frustrateded and not sure what is going on. I left a post this afternoon which I am guessing I did not click on the right thing. I am wondering what quality of life al person has after gettiNG LVaD. i M scared and totally frustated. The medical field makes it all sound very postive and uplifting. I have my doubts.

Nonna2dustan's picture Nonna2dustan
Thu, 06/14/2012 - 7:36am

Puzzleboxs: I have been a caregiver to a LVAD recipient for a little over 8 months. I feel the quality of life is up to the recipient. Of course it depends on the body accepting the change plus how sick they were prior to. It is a "Roller Coaster Ride". You learn to really grasp the good days and that gets me through the down days.

frazzled's picture frazzled
Fri, 06/15/2012 - 9:47pm

I tend to be long-winded so forgive me. I'll try to give a history and treatment as quick as I can...Our journey to VAD land began in Dec of 2006..the year of flu shortage vaccine..My husband (an MD) had 3 doses left, one for me, our son and himself. As he was preparing his, a little old lady came into his office and wanted one, so he gave to her. Bad move. He got the flu and had liver failure, kidney failure and heart failure. The heart failure (CHF) led to a pacemaker being iserted. From that day on, he was never well again and was only able to work sporatically. In Mar 2009, I was alone at our vacation home in Florida, he remained in MI. I had a massive heart attack, triple-by-pass, 2 valves replaced and a major stroke. Spent 3 1/2 wks in ICU and another 6 learning to walk again. Two or three days after I came home, I got a call that Tony was being air-lifted to University of Mich and needed a heart tranplant! I flew home (still couldn't walk) and spent my recovery driving 120 mi a day to the hospital for 2 1/2 mo. He had many problems and had to have the VAD replaced in Mar 2010. Still many problems and only able to work in little spurts, which of course, caused finanical concerns too. His pacemaker became infected early this year and he was on IV therapy at home 2x a day. (I'm a nurse). Then the infection went to his drive-line and we're in a fight for his life. He's doing fairly well at this time and we are hopeful but, guarded. On top of all this the worst thing that could happen to anyone happened to us. Our beautiful 39 yr old daughter (former swimsuit model) and mother of 2 boys, was murdered in Ocala FL. The stress in this house is horrendous. While we are thankful the LVAD is saving his life, it's been difficult at best. Sorry I rambled on, just felt the need to get everything in. So that's our story. We are grateful and greatly stressed at the same time.

ramaki's picture ramaki
Fri, 08/24/2012 - 12:40am

Dear Frazzled, I am sorry to hear about you and your husband's story and your tragic loss. We live very close to each other and I would like to hear back from you. I hope you will contact me so that we can connect. I wish you the best.

Robha49's picture Robha49
Sun, 02/03/2013 - 7:16pm

My husband received his LVAD on Dec. 14, 2012. He is still in the hospital and now they are saying that his LVAD might be chewing up his platelets which is causing kidney and liver problems. Has anyone heard of this? Will he ever get to come home? I am just looking for some answers and can't seem to get them from the doctors and nurses.
Thanks. I am so ready to get off of the "roller coaster ride" and get to some kind of normalcy.

aviva's picture aviva
Wed, 02/06/2013 - 9:49am

Dear robha49, my dad was implanted with a vad December 6 2012 and he also is still in the hospital. He also had some kidney involvement, which they assured us was not uncommon. They did a dialysis like treatment, I forget what it was called, at bedside for about 10 days. Thank goodness this really helped the kidneys, but it didn't help with his fluid retention, something that continues to go on. Right now the vad is doing really well, our biggest obstacle is a wound he developed while in ICU since they couldn't move him with the aortic pump which was in for quite some time. Unfortunately the wound has not gotten better and he is headed to surgery later today to have it cleaned and have his coccyx bone removed. What I have learned through this extended hospitalization is that we have to be advocates for our loved ones. Fight for the answers you deserve. One recommendation may be to talk to the nurse manager on the floor and then try to call a meeting with the whole team to get clarity on what is going on and what you can expect. Believe me, I know what you mean when you talk about this "roller coaster", we are also on one. These are the things we never hear about, or expect to happen.
One more thing, my dad had a blood transfusion a couple of days ago because his hemoglobin was low and he was shaky and lethargic. He was much better after the transfusion. Are they able to give your husband platelets? Sorry, one more thing. When my dad first had the device implanted, they had to keep the pump speed very low, 4600, to the point where they had to call the manufacturer because the vad kept alarming. His speed is now up to 8200. Is it possible that your husband's body can't handle the speed it is set at? Can't wait until we can both get our loved one home, this has been way too long a hospitalization for both of them. Please be in touch if you want at All the best

paula110's picture paula110
Feeling resentful
Fri, 05/01/2015 - 4:11pm

While reading these posts, I am realizing how lucky my husband and I are. He has had his LVAD since June 2013. He also has cancer (Multiple Myeloma), so he is not a candidate for a transplant. He is able to go to work most days but comes home dog-tired. He also has water-retention and we can't seem to get rid of the fluid in his feet. Lately, I have a lot of resentment building up inside. Being a caregiver can be a thank-less job. My husband doesn't have a clue about his meds. He doesn't know where his bandage supplies come from. I have realized that it's very important to have time for yourself - whether it's alone or with friends. Am I being over-sensitive?