Where are the recent posts, I am scared!!

My 57 y/o husband had the Heartware LVAD implanted on February 10th. He was released from the hospital day 10 post VAD. though the actual pump seems to be doing well and no alarms etcetera,  all he wants to do is sleep. In the last 24 hours he has slept 20 hours! I also cannot get him to motivate to do much moving around when he is awake. Can anyone tell me if this has been their experience?

If my understanding is correct, there is a set insurance reimbursement amount for any particular procedure such as an LVAD implant. It is to the hospital's financial advantage to discharge your sooner rather than later if it is deemed medically safe to do so. I have heard that their break even for an LVAD is around 21 days. If you stay longer, they lose money, even if it is medically necessary. Each medical center will have its own protocols and methods and the doctors in charge ultimately decide. This is an oversimplification but if they can safely discharge you in ten days it's potentially to their advantage.  

I just don’t come on often. I should make more of an effort. I hope things are going well for you.

My 76 yr. old husband has just been told about L-VAD surgery from his cardiologist.  I'm very concerned about the quality of life after and even if he would survive the surgery.  He's been on insulin for 10 years, has always had asthma, and has Parkinson's.  He had a triple bi-pass in 1998 and gastric bi-pass 5 years ago.  He has an enlarged heart and EF is 22.  I would love to hear from people close to his age that have gotten the L-VAD.  I'm so scared about all of this! 

I was 61 when my lvad was done.  Wouldn't trade it for anything.  I had been taken to Duke more dead than alive a couple times.  Before lvad I would walk about 5 or 6 steps and be totally exhausted.  I also am not a bridge to transplant.  Organs won't support it.  I had no fear problems as I was so close to being dead or shutting down in cardiac arrest enough times that the question became what was going to stop me from okaying surgery?  A fear of dying?  I chose to face it rather than hide under the bed and wait for it.  Mind is dead, just waiting for the body to catch up isn't living.

Hi, my name is Ron. I am 67 years old. I just had the LVAD procedure done on 6/1/21. I am doing great, and now living on my own, independently. I am driving, shopping, appointments ....etc. My life has changed dramatically, mostly positive. The recovery is tough, but if you put in the work with Physical Therapy, it goes relatively fast. I must say, with all I have said in the positive, the negatives are there also. I do not live as I did before. Don't just jump up and be off. The equipment takes some getting used to, especially showering. I have my processes which I go thru in regards to taking care of myself and my body. I have gone from an E.F. of 10-15, and increased 25%. My life expectancy, well lets say, as I am now, I should outlive that by a considerable number. I am writing to encourage those that are questioning whether to do or not. Your call, but I highly recommend this procedure. Todays LVAD equipment, especially the pump is top shelf. I have Heartmate III, and I am very happy with the outcome. Be Well, Be Safe, Ron

I embraced the lvad as a necessary change in my life.  After 20 plus years of heart failure when this was presented as an option to stay alive I took it.  The time for fear had long since passed.   After years of dealing with it what was to stop me frm living life?  A fear of dying? 

How much does anyone excise…..  It seem I can excise as much as I can breath. There some days I do ok. Some day I does go near my excise equipment. All I can do is nap. I was told I should excise 45mins twice a week.

I just ordered a tank top from LVAD Gear to carry batteries and controller.  I can’t find  the 6 pocket Under  Armor standard foot ball short that were recommended. I need xxL.  Is there anything else that is similar? 

ken Davis

just got my Heartmate 3 on Oct. 14

I had no problem ordering mine (Underarmour) from Amazon. Also from www.undermor.com. It's called a "mens' 6 pocket football girdle". Have you tried these sources?

I don't often visit mylvad but there is a lot of misinformation and apparently lack of direction from doctors post surgery.

Maybe it works for some but I would never NOT cover my site to shower. It's not that hard and safer. I can't imagine using Press & Seal to shower. Or buying supplies from a non specialized medical supplier.

I have Medicare and a Medicare Supplement and every supply is fully covered, both site daily kits and bandages to cover my site when showering.There is a great resource for these and an earlier poster recommended this company too- '

Wound Care. 888-287-9797. Fast, friendly Customer Service.

I had to have my Heartmate II, (Jan 2018) removed due to blood clotting issues and now have a Heartmate III (Dec 20) so I've been through a lot of supplies. Never had site issues, and never had to pay a single penny out of pocket. I have been very fortunate.

Please talk with your cardiologist about these issues.I know it maybe difficult to resolve LVAD issues, especially if your doctor is any distance away from where you live.

Good luck. It gets better.

Mike H.

My husband got his LVAD in October 2021. It has been challenging. There were complications but we got through them all. He now works fill time and is back to golf. Getting the LVAD was the right decision.  We have even visited LVAD candidates in the hospital,to give them the unvarnished facts about our experience.My husband is 75 years old.

Pat Davis

I was 69 and in end stage heart failure. Had a few bumps in the road the first year, but I'm now 74 and doing well enough to be able to space my visits to the cardiologist to 'see you in 6 months'. I see you're talking HeartMate II. Why not HeartMate III? 7-8 lbs. vs. 2-3 lbs. Ask your surgeon about this.  Sue S.

Google:  Newark Hospital Patient Sets NJ Record for Living With Heart Pump

This is the 14 yr. anniversary in addition to.

Ron, big congrats. I understand your journey. I will be 12 years out in September with my HM II. Have some other issues but the pump keeps rolling on. 82 years old, UFHealth, Gainesville, FL

This week on June 15th will be my 10th Anniversary of my Heartmate II. I received it when I was 63 years old I am now 73 years old. The LVAD has given me ten years of amazing life. I have traveled internationally several times and I have enjoyed the benefits of a fruitful life. The device has allowed me to be at the birth of  a great grandson , the graduation of three grandchildren and countless opportunities to travel nationally and Internationally. I have many time recommended many potential recipients to ABSOLUTELY get it done.

There have been some inconveniences with bleeding and have required an occasional blood transfusion BUT I live a full and active life and can put on with the inconveniences that come. My device was installed at Mayo Clinic in Phoenix AZ.

Myriam A Torres

My guy received his lvad at the beginning of the worst of covid. The issue with the hospitals is they have a script to follow and they hand you a book that shows how to shower and such. There was alot we did not learn due to the covid and had to figure it out for ourselves. He has had his 2 yrs. He has had one infection and is still on medication for it. Instead of covering your wound in press N seal for a shower they make 8x12 tegaderms that cover everything that needs to be covered for the shower. We also purchased a hand held shower sprayer similar to the ones on a kitchen sink but made for a shower, so he has more control where the water goes. He has an old 50's house with a small bathroom. His complaint is that when he has to sit on the toilet he has no place to set his batteries and controller. That's one thing they never tell you about. It is a learning experience and reading a lot of the articles listed will help you. A current issue is the supply chain. When you get the change kits keep any leftovers in case you need to make up your own. I am his caregiver and we are currently in that situation. Your drs. may be able to give you some to hold you over. If they did not tell you also the leftovers that your cannot use such as tape and gauze can be passed on to the animal clinics. Hope this helps. Continue to talk to people and read as much as you can. Becky H

Does anyone use something like a clip to hold their shower bag that will break if you were to fall in the shower. 

My husband got. his Heart Mate on Oct 14, 2021. He was 75 years old then. ( now 76) . It’s was a bit overwhelming at first. But we got through it. He was back to work in 4 Months. He was back to golfing in the spring.  He is too old for  a transplant . We have adjusted to our new normal. Without his LVAD, he would not still be here.

Hang in there. It is worth it.

Pat  Davis

It’s definitely worth it.

Hang in there.

Pat Davis