Introduction

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 

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

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

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

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?

The most important thing here is him qualifying and getting the implant....prayers your way on that!
You will be taught a lot and will have 24 hour access to a LVAD team member...in fact many care givers are given quizzes on knowledge of everything you need to know and how to change dressing. What you are not taught is how to survive as a loving couple, you being a caretaker. I found the following:

For daily care such as dressing and cleaning agree on a VERY set schedule and remember allow your spouse to do as much as possible....this keeps them involved and participating (so important) I’d lay stuff out ....help sit up give about 30 mins...then ask ( not just assume that causes co dependence)

I set appropriate bedtime....they need to heal and be able to get up to rehab ( also gives you the time for you)

Do not be surprised at remarks like...I never thought it’d be so much work...I hate being on batteries or electricity I feel limited..I’m feeling better but really bad you have so much to do etc...it’s new but so easy once you establish ROUTINES...don’t fall into winging it and respect and be respected...many frustrations will arise but as a caretaker you must enforce two way respect walking away to take a breather is good ....know you’re doing this because you love each other....and remember you are never alone....pray! Ask for prayer and keep posting 

Wendygail

Hi Valerie,

I haven't visited the LVAD forums lately, but I want you to know you can do this! The Heartmate 3 LVAD has been a lifesaver for my husband who's 71.  I'm much younger at age 54.  April 5th was the 8th month anniversary of his surgery in Indianapolis IN.  After suffering a heart attack in Feb. 2007 (he survived the "widow maker" type of blood clot), he was relatively stable on the minimum amount of heart medication and diurectics for almost 12 years.  When he started to slide into  heart failure, it was a quick descent.  I was lucky I could give up a job that I loved (but it didn't pay much anyway) to take care of him.  He was hospitalized twice in July 2019 at our local hospital and was eventually referred to the VAD team at St. Vincent's Hospital.  The entire team has been amazing every step of the way, but there were hiccups and minor setbacks that seemed overwhelming. In a 50 day period my husband was hospitalized 39 days. Post-VAD, my husband likes to complain about the weight of the batteries he must wear and carry most of the day, and he hates that he can't swim, but that's about it. Here's some advice that may be helpful.

Write down everything you can when your husband sees the Dr. Learn and read as much as you can about LVAD's and heart related medical jargon - it helped me feel like I could better understand SOME of the things the Drs. and nurses were talking about.  Keep a journal when ever your husband is hospitalized.  Attitude is everything and so is trusting the care teams.  Your rest and continued good health is just as important as his recovery.  I used Caringbridge.org to keep family and friends updated instead of trying to constantly keep up with texts and phone calls. 

Post - VAD implant: 1) Routines are important.  Pill containers are important.  Taking all medications as prescribed at the same times every day is crucial. Overcoming your fear of drive-line dressing changes takes time but soon you'll be a pro. Learning everything about the controller is a little like boot camp for new recruits.  When I thought I had mastered something, the coordinator would say " show me again" (in a kind way). Repetition builds confidence.

2) When your hubby is irritable or even depressed, try to take it in stride (and that will be hard).  It's hard to know when to encourage him to do more, but you'll know when he's having good and bad days.  

3) When you leave the hospital and everyone wants to visit you at home (we were there 30 days exactly), it can be stressful. Family and true friends will understand if you need to ease into your new routines.  Ask them to call ahead to see when it would be better to come over.

4) Your post -VAD coordinator can really help you help your husband.  We have been lucky and fortunate to be assigned a nurse who is dedicated, smart and even funny at times. She helps me laugh and keeps things light.

Prayers and best of luck to you and your husband.  When the possibility of a heart transplant was discussed, our doctor said something along the lines of "hearts aren't sitting on a shelf, but an LVAD is and we can get him back to a better quality of life".  The Dr. was telling the absolute truth.  

Hello Valerie,

I have had two (2) LVADs implants within the span of 7 years.  My husband was my caregiver both times, and was wonderful.  He was anxious at first, but your husband will be in the hospital more then long enough for you, and him, to feel comfortable changing a dressing, which is the most important thing that must be done with an LVAD patient.  You will be amazed at what you will learn as you go!  For me, the surgeries took 3 months to completely recover from.  I can do everything he did for me, including changing my own dressing in the mirror.  Your husband will be driving himself to his own appointments, change his own dressing, cook, clean, anything except laying on his stomach and taking a bath/swimming. 

I feel that the life is so much more then worth the 'hassle' of healing from open heart surgery, keeping up with LVAD and INR appointments, not to mention the important medications needed.  Yes, you will need to change your dressing every other day (every hospital is different), but being lazy with that task alone, caused me an infection that was treated.  Three years later, the same infection came back, taking my appetite away, 20 pounds away, energy away, and giving me pain and fever.  My choice was surgery or hospice.  Please heed my warning..infection and INR are the two major things needed to keep LVAD patients healthy.   It is easy to let your guard down when one is doing well, life is busy, but you cannot skip dressing changes.  An example of having to stay on your toes with an LVAD; family was visiting and we were out late at dinner one night.  I had to use the backup batteries in my backpack.  I had completely forgotten about changing them out with fully charged batteries as I ran with more errands the next morning.  Without going into detail, both my family and I stressed out for something that 1) could have kill me, and 2) so easily could be avoided.  

I have now had 10 wonderful years of added life because of the LVAD.  I had one, 3 month old grandchild when I first got sick, now I have 3 with identical twin boys due next month, for a total of 5!!   I wish you both the very best, and hope your experience is as positive as mine, except the infection part.  Prayers are always helpful.

Sincerely Yours,

Cindy J. Ruth

At 55 I had the widow maker which destroyed the left side of heart. My heart function was around 20% and slowly declined. An ICD was implanted and jI got down to 12% function. 
Quit reading the material is my suggestion. When implanted the staff will show and teach you all you need. You have to practice and show them that you and husband understand.  
in addition, they trained two back ups for my wife. The local fire department was notified I had LVAD and a person was trained there also. Build A team to support you. 
After recovering from surgery we went right back to traveling, going to concert etc. We packed up my wall unit, batteries and battery recharger. 
I hate Heartmate 2 and batteries would last me 16-18 hours. Only once did I have to change battery while still supported by them. 
P.S. I received heart transplant November 2018

Being a little scared at frist is a good thing because it will cause you to be focused and extra careful. After a while careful caregiving such as dressing changes becomes second nature. Emphasize CAREFUL. 

My dad has been having heart issues for years and in March 2019 finally got an HVAD implanted. It has been more than a year and he's still having trouble adjusting to his new life and new limitations. So my best advice is always remember why you love him and be very patient with him. 

I am sure you are more than able to do all the 'medical' stuff you will have to do, but it is imperative that you remember that you have to support him emotionally. I can't even imagine what it means to have this kind of change in your life. 

My mum is doing absolutely great and she was really scared too. Keep your optimism!