Unsure of getting a lvad

Commendations and appreciation to you for your care and concern for your S.O. (Boyfriend).

What other treatment options do you have besides the LVAD ?

Is the LVAD your boyfriends’ only recourse ?

In some situations, the LVAD implantation is a temporary solution with the goal of “road to recovery”, with LVAD removal (x-installation) later.  

In other cases the LVAD is “destination therapy.”   Either they don’t have the surgical skill to correct your S.O.’s issues or the hospital bureaucrats have risk-analyses type roadblocks (to surgery) in place.

Lastly, in many situations the LVAD is “bridge to transplant.”

Your Cardiologist can tell you about these possibilities.

Exercise is paramount:  That means standing up and walking the Ward ASAP, later take speed-walks. I started moving around early-on and weight lifting (modest dumbell weights) again.

Be sure to bring your boyfriend outside food-faire.  The hospital cuisine can be an epicurean nightmare (viz., Hospital food consumption can sometimes be a patient’s greatest challenge).

Hi,

My husband had a defibrillator placed abd then about 2 years later he needed an LVAD. 
 

My first question is How old is your boyfriend??

I was the caregiver for my husband and I also changed his bandage daily.

after the aloe that was placed it took them five days to wake up which was sort of a nightmare they also thought that he suffered a stroke during the surgery so he was hooked up to an EEG machine and was on the ventilator for five days. he was in the hospital for about six weeks then when he got out he did PT at home and had a walker. Then he graduated to cardiac rehab which took about three months. because he had the strokes he couldn’t drive any longer because he lost his peripheral vision on the right. I became his driver and his caregiver all at the same time.  I thought he was going to be a lot better off medically however it did improve his quality of life as he was able to walk without having shortness of breath. After the cardiac rehab we were up to walking about 2 miles a day together with our little Dachshund, which was Great!!

my husband died because he got a driveline infection January 31, 2020. he had MRSA. 
 

Also, what is your boyfriends EF?? 

Feel free to email me if you want to know more about my experience.

It can be daunting and kind of lonely being a caregiver . My husband’s lvad was place at Columbia in NYC

Take care ! 

It is difficult to decide.  I initially said no but when faced with an LVAD or hospice I chose life.  I was grateful I was able to make a decision as some patients don’t have a choice. I spoke with another LVAD patient who helped me see that I can live a happy life with an LVAD.  I was 52 at the time and not eligible for a transplant due to a cancer diagnosis. (Chemo caused the heart failure).  
I am 2.5 years with an LVAD and living a full life.  I did not have any major complications after surgery so it took about 6 months  to resume most activities and about a year to mentally adjust.  It was a struggle for me. I wanted my old life back.  The equipment and daily care was hard to accept. But in the end I chose to be happy and deal with it.  I am glad I chose to live.  I now can see how my experience changed me and there are aspects of my life that are better.  I am active and able to travel.  I do miss swimming. I would advise talking to another patient if possible.  There are many questions to be answered as a caregiver and patient.  Good luck.  

Hello Sally, 

I can completely understand your uncertainty about whether your boyfriend should get an LVAD.  My heart failure happened suddenly after 53 years of healthy life, so I was quite unprepared for the experience of being a sick person.  It was scary going from healthy and active the day before, to dying in a hospital bed with only a day or two to decide if I wanted this artificial heart thing that I’d never even heard of.  The thing that finally clenched the decision was that it was the only option where I would live through the week.  When they put it that way, the path was clear.  I really wonder what I would have done if there was any real choice.  

To answer your questions, my life quality of life is excellent.  Life is different, but it’s just as good as before the heart attack.  I’ve had an LVAD for four years now, and I’ve never had a driveline infection.  Driveline dressing changes (changing my LVAD gasket, as we call it) have become routine.  We’re careful and don’t take shortcuts but it’s not at all difficult for a caregiver to do.   As for recovery, upon discharge from the hospital I was able to get around the house, cautiously navigate stairs and even vacuum (painfully slow but enough to stubbornly prove a point that I could).  At 7 months, I did a 35 mile bike ride with 980 feet of elevation gain.  Ongoing improvement in strength and stamina continued for over a year after implant.  

Receiving the LVAD was scary at first.  I, too, really wanted to know what life would be like on a VAD.  If your hospital can arrange an opportunity to chat directly with an LVAD patient that may provide some insight.  There’s also a show called Life on Batteries about living with an LVAD.  Episodes cover a variety of topics and range from 10 minute tutorials to a feature length movie.  A recurring theme is reclaiming quality of life.  I wished something like this existed when I was implanted, so I helped create it.  While it doesn’t reflect everyone’s experience on a VAD, it does reflect mine, and that experience is pretty positive.

The latest episode

Season 1 Episode Guide

Season 2 Episode Guide

Watch all the full-length episodes here

The main takeaway is that your life will change, at least in the sense that things you used to just “do” before, now require some planning.  If that’s a deal breaker, the LVAD is not for you.  But if you can become comfortable with that and can manage to get past needing things exactly like they were before, it can be possible to reclaim the vast majority of the life you had.  Travel, cycling, downhill skiing, camping, even scuba diving (in a drysuit of course with special equipment and protocols) are possible!  Your VAD Team at the hospital can help with all of this.  If you and your boyfriend approach challenges from a problem solving perspective and are willing to adapt, the future on an LVAD can be very exciting.

Hope some of this is of help.

Take care,

Larrie 
 

Larrie hearing your story is certainly uplifting, make no mistake.  Lisa, I too am very active, workout, weights, etc. and have had my LVAD "4" years now.   Heart failure at age 47 and left with children to basically make the decision of an LVAD or die in 6 months.  So the the medical profession advised.  It was all in a two week process of decisions: Whereby, was that the only intervention to treat CHF an LVAD???? I don't think so.  I was on transplant list for 8 months long enough for them to run up a huge bill of 1,000,000.00 workup.  However, what they already knew was i had 99 percent antibodies, not good for transplant, and type O positive blood, not the best either.... Sooooo after 8 months of nonstop testing, they took me off list.  Wow!!!! Buyer please beware and ask alll the questions.  Needless to say i changed hospitals real quick.  I was getting more clear, feeling very well and back to myself.  Look out.  Coming from a medical/clinical field, I wasn't taking this sitting down.  The point I'm trying to make, please make sure this is your only resource, what are allll the options, mechanical and medication management, etc.  One thing that I'm fighting with now with new hospital is medication interventions to help the EF rise.  right now is a 20, however i worked 10 years with a 10 EF.  At the present time on a baby dose med...one med for heart strengthening.  That little med and dose, will take years to improve if it does at all.   I asked for another medication to help the EF and efficiency of heart to improve, to no avail.   At this time, after 4 years, still LVAD and No current research with me does medication management improve the EF to possibly unhook the VAD?  That is my goal...It has been done but not on this woman, yet.  They are not providing clarity at all with questions.  Currently, setting up an appointment to see Physician Director to discuss some concerns and "COMPLAINTS." Your at a time where your left standing at their mercy and no knowledge of what the real deal is.  its tough with an LVAD, not going to SUGARCOAT.  You are always hooked to a machine, batteries etc.  If alarms go off, your off to the hospital.  At present, JUST RELEASED THIS WEEKEND, 1/30/21 FOR GI BLEEDING, THE  SECOND IN A YEAR TRANSFUSION.  The problem is COUMADIN.  That is the only blood thinner they use with this device, the only research done was with coumadin.  Because of the constant flow of blood and thinner, bruise, bleed, etc. GI bleeds are not uncommon.  I've never had an infection.  I take very good care of the site.  That is very very important.  I'm not an LVAD fan at all, but certainly sharing my experience.  I hope that you make the right decision for you...but have to share some of the events.  Real stories, real events, real people.  May God bless you and your boyfriend to make the right decision for treatment of CHF.  

Juanita

Lisa,

Heart failure means that the heart muscle itself is failing which is why surgery on the heart isn't really an option.  There are four levels from minor to major.  Early stages can be treated with medicine; the worst state, stage 4 is, death within a few months.  A transplant or lvad is the only solution at that stage.  I suspect determining that level was the reason for all of the tests.  If your friend is under 70, he might get an lvad and later a transplant.  I got an lvad at 75, four years ago.  I was in the hospital for 2 weeks, another couple of weeks of physical therapy at home, and full recovery in a couple of months.  Driveline maintenance is pretty simple-a 20 minute procedure every couple of days which the patient can learn to do by himself.  If he gets it, look at www.carewmedicalwear.com for the best lvad shirt I've found which mounts the batteries and controller on the undershirt so that normal activities can be easily undertaken.