Profile picture for user valerie
Valerie L. Caregiver

Introduction

Hello all. I recently joined this forum because my husband has end stage congestive heart failure. I feel like this has happened so fast. He had a massive heart attack in May 2019 and his EF is 20%. He has been in and out of the hospital multiple times, many times for fluid retention. He has an ICD and 3 days later after that was implanted, he had a mild stroke.  Currently he has an IV at home in which he receives milrinone.  It's only supposed to be used short term. He has been going through many tests before he can get an LVAD. So far, so good. He has passed all his tests. His bloodwork continues to look good. It's tested every week.  He is 52 years old.  I am  his caregiver. 

I have been doing lots of research about LVAD's about a caregiver's responsibility. Honestly...it's scaring me!! I am sure the LVAD team will go over many things with me and answer all my questions so I'm trying not to freak out. I'm afraid of panicking when alarms go off and when power outages happen. I know I shouldn't be worrying at this point, but that's me. 

I'm glad I've found this forum because I will definitely need some support and encouragement. Thank you!

Valerie

 

Profile picture for user bigdog1944
Richard A.

I have an LVAD and my wife is the caregiver. I can tell you that there is no reason to freak out, you will have to change or help him change dressings every day for a while but after some time it will be weekly. They will train you to change the dressing and everything else you need at the LVAD Clinic before he gets out of the hospital, they will also call the power co. for you so they know that you have a life-saving device at your house. My clinic even told me where to go if the power went out. So I think they will give you everything you need to know at the clinic. Hope this helps you.

Bad 

Profile picture for user valerie

In reply to by Richard A.

Valerie L.

Thank you so much for responding! Yes, they recently told me I would have to take a "class" and pass a test on how to change the dressings and  respond to the alarms. So that's a good thing that they won't just send  us home with a booklet!! Appreciate the encouragement!

Profile picture for user Anonymous
Anonymous

Dear Valerie,

Do not be scared, you will step up to the plate, when needed, as we all do.

I am sorry to hear about your husband's condition. This site will give you support, comfort ans info.

Wishing you all the best

Gabriele

Profile picture for user superglide
Rob S.

Hello Valerie ,

My name is Rob and I am a 18 months living with a Heartmate 2 LVAD.Once you have a routine to follow then you will be ok.if the power would fail.dont panic.switch over to battery power.you should receive a total of eight  (8) batteries. You use 2 at a time.2 batterys can last up to 14 hours.your other options are to go to the fire department or Hospital that will always help you considering your circumstances.

Don't worry .Keep your faith and it won't be hard,remember that he will mostly self sufficient once the procedure is completed .he will be like a new man......I had less that 10% refraction ,11 heart attacks ,45 .....this summer I had ridden my motorcycle over 7500 miles.. Keep your faith in God 

He will carry you through 

Your in my prayers , Rob

Profile picture for user padamssm
Patricia S.

Hi Valerie,

I'm also a caregiver for my husband. Your concern about your husband getting an LVAD inspired me to write about our experience. Every LVAD story is different; some end far too soon, and some people battle infections. Mike had many medical difficulties in the early days. Things have gotten better over the years. Mike is one of the lucky ones.

We are so grateful for the LVAD, and it's just part of our routine of life now. He got his LVAD a little over four years ago. He was in and out of the hospital the first year and a half with problems similar to your husband's, and his EF is <20%. He has an ICD also, and had one permanent stroke 3 weeks after LVAD implant (he lost the upper right quadrant of his vision) and has had some smaller temporary strokes. He also was on milrinone before the LVAD, and from my perspective the LVAD is much easier for a caregiver to deal with.

I too was concerned about alarms but it is so rare for him - an occasional low flow alarm - that I don't think about it anymore. Mike has a HeartWare, and the pump itself has never had any problem. Most of his problems have been with the blood thinner. We thought we could keep his INR more in range if we handled it at home, so two years ago the LVAD Clinic agreed to let me test him weekly and make changes as needed in the amount of Coumadin he takes. This has worked well - no strokes and no bleeding. The other thing we are really careful about is germs because if Mike gets a cold, he ends up in the hospital with pneumonia. We carry and use hand sanitizer consistently. I maintain a sterile environment when changing his dressing, and when he takes a shower I use Tegaderm film in addition to the plastic shower cover in the kit and I tape all around the edges of the plastic; his dressing has never gotten wet during a shower and he has never had an infection. For the most part, medication keeps the edema at a reasonable level. We feel we have the potential big problems under control.

For your peace of mind, if your living situation permits it, you might consider getting a generator so you never have to worry about the electricity going out. We had a backup generator before Mike got the LVAD so that's a huge weight off my mind.

I think my biggest adjustments have been shouldering most of the chores that Mike had previously done, and finding ways that we can get out and about at his pace and safely. Because of the vision stroke, Mike no longer drives. He walks with a cane for balance and has had to get used to being pushed in a wheelchair for long distances, like to tour a museum or go through an airport. The handicapped placard is a huge help for getting in and out of theaters and stores with the least amount of walking. 

We need to stay within driving distance of an LVAD hospital when we make plans to go somewhere. Last year we went to visit our son in Palo Alto, CA, and took a side trip to Monterey, a place that we love. Mike had a cold that went into pneumonia in Monterey, and the local hospital had no nurses who had even seen an LVAD before so he was transferred by ambulance to Stanford University Hospital in Palo Alto. Going to Monterey was not part of our original plan, and I took a chance that I won't do again. I was told by his doctors from the beginning that if an LVAD patient has to go into the hospital for any reason, even a broken leg, they would be placed on the heart failure ward because of needing to monitor the LVAD while in the hospital. We're still able to travel widely with that restriction because there are LVAD hospitals in so many areas of the US. We have family spread around the US and in British Columbia, and there is an LVAD hospital in Vancouver, so we try to have a family reunion in Vancouver each year.

No matter where we go, the LVAD Team at his hospital is ready 24/7 to handle whatever problem comes up, and they call back within a minute if I page them. If Mike has a problem away from home, they talk with the medical staff wherever we are. Before a planned trip, I notify the LVAD Team of the LVAD hospital closest to where we'll be staying so they're ready to send Mike's records and contact the hospital if anything happens. We've had three vacations interrupted by short hospital stays (not in Canada, happily) and then we resumed our vacation when the crisis was over. (We always get trip insurance in case the trip has to be canceled.) Mike was hospitalized so much in the first year and a half that we started calling the heart failure ward our second home, and going to the hospital became more of an expected annoyance than a horrible thing (we loved the nurses there). Now that that phase is over, we do what we want knowing that we might have to make a side trip to ER for a bit, and usually it doesn't happen.

I plan time for myself. Mike and I are retired. We have friends who volunteered to be on a call list with a medic alert company and who are in our immediate vicinity, so I have good backup. I do volunteer work. I go out for a drink with friends before dinner once a week. I rehearse weekly in a chorus and we perform periodically; Mike comes to our performances. I also take voice lessons, study music theory over the internet, and occasionally take a formal class or workshop, usually improv. Mike and I both like theater, so we see plays (mostly musicals) fairly often; luckily we're in a big theater town. From our perspective, we're working around every limitation that pops up. Mike says he's happy. He has slowed down and given up a lot - no snorkeling! - but once we stopped thinking of this as a bad thing and just went with it, we saw how to continue to have an enjoyable life. We've been married 23 years. I expected to lose him in the first year and certainly in the second year after LVAD implant, and now I don't think as often about that and realize that he could outlive me!

Patricia

Profile picture for user Anonymous

In reply to by Patricia S.

Anonymous

What an inspiring and uplifting report, thank you Patricia,  you have done a lot of good with this. Thank you for taking the time to write.

You gave confidence and can do attitude.

Gabriele

Profile picture for user valerie

In reply to by Patricia S.

Valerie L.

Thank you so much for taking the time to tell me about your experiences. I had thought about getting a generator. I'm definitely going to look into that. The first thing we need to do though is hire an electrician to replace some of our 2 prong outlets to 3 prongs. We were told the equipment requires 3 prong outlets. Our house was built in the 60's and the entire house only has 2 prong outlets. We've talked about getting them replaced but have never done it. I've already been looking at which hospitals are LVAD hospitals and making sure we are near one when traveling!  Do you ever leave Mike alone or is someone always with him? (or are they just on call?) A couple of times a year I've been going on a girl's trip with friends and I'm gone for a weekend. I'd hate to leave him alone and something happen!  I still work but my boss has allowed me to work from home since all of this happened. I'm very grateful for that. My husband may be getting his LVAD very soon. He has a dental appointment next week and an appointment with a gastroenterologist the week after. Then the hospital wants him to come in for a right catherization and they say that if all goes well, they would keep him and go ahead with the LVAD surgery. So this could be happening. very soon! Our LVAD hospital is about a hour's drive away, so I hope we have a mild winter and no bad weather!  Thanks again for your encouragement!

Profile picture for user Laurie swader
Laurie S.

Quick question, my husband has had an lvad for four months, everything is going pretty great except now he has a nagging dry cough that comes in fits. Has anyone else been through this with a reason why maybe?