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nik5252's picture nik5252
Reliance on caregiver
Sun, 01/07/2018 - 10:36pm

My husband is likely getting an LVAD this week. He has cardiomyopathy and is only 40 so they want to put off a transplant as long as possible. The more I read about LVADs, the more I hear of numerous complications, recovery issues, and the amount of care the caregiver must provide in the months after they return home. I work full time and we have 3 small kids, so I am trying to wrap my mind around how this is going to work. I can work from home some, but not all the time. Once you go home with your LVAD, is the daily activity (dressing changes, using the bathroom, etc) something that the patient can do on their own, or will I need to hire a nurse or someone to assist when I cannot be there? I have read that they cannot be alone for 30 days after their return home, but I am not sure if that is for medical care needs, or just an extra set of eyes. I am envisioning the need to hire a sitter for my kids and a nurse/PCA for my husband any time I have to leave the house for work or grocery shopping in those 30 days.

Can a caregiver with experience in this let me know what to really expect? I just want to be sure I am prepared. Thanks.

Oasis101's picture Oasis101
I'm an LVAD patient and after
Mon, 01/08/2018 - 11:51am

I'm an LVAD patient and after the first week I didn't need much help, but the Dr required someone to be around in case something happened. I was able to take care of myself other than the dressing changes. After the first 6 weeks I started doing my own dressing changes and have been for the last two years.

Phil

Oasis101's picture Oasis101
I ment to reply to you.
Mon, 01/08/2018 - 11:53am

I ment to reply to you. Please read the following post from me.

Phil

Chrisjw's picture Chrisjw
I have an LVAD in the uk
Mon, 01/08/2018 - 2:05pm

Hi
I am 60 yo and today 15 weeks post op. I was discharged home 15 days post op and apart from help to shower for the first few days the only thing my wife now assists with is the weekly dressing changes.

I shower daily and have no probs with it whatsoever. We change the dressings every week or sooner if its coming off ( rare ).

I have a Heartware LVAD fitted and use the shower bag provided along with a sheet of plastic taped with impermeable pvc tape over the dressing.

We spent 3 days of serious Xmas shopping and stopping in a Hotel 8 weeks post op with no probs.

I started riding an electric bicycle 9 weeks post op and basically now work most days and for about 30hrs a week in a physical job.

The LVAD is the best thing that has happened to me since my heart attack in aug which resulted in heart failure of the LH side. I am currently awaiting a transplant as we are only allowed to have an LVAD as a bridge to transplant in the UK, but I just get on with life and try not to let it get in the way.

If you want to know any more please just ask.

Chris

Beth Samson's picture Beth Samson
Heartware LVAD
Tue, 01/16/2018 - 3:22pm (Reply to #4)

That is interesting, Chris. I did not know an LVAD can only be implanted as a bridge to transplant in the U.K. We live in the U.S., but have friends in the U.K. & I was there in November, spending time with my daughter who was doing a college internship in Islington. Anyway, my husband has a heartware & was to be a bridge to transplant, but he has had a kidney removed due to a tumor & 2 tumors were recently removed from his bladder as well. Sadly, we have been told tumors will likely grow back making him ineligible for an evaluation for a transplant of both heart & kidney. Sounds like you are doing well - wish you the best as you journey forward.

gmanvball's picture gmanvball
I am a LVAD patient and had
Mon, 01/08/2018 - 2:19pm

I am a LVAD patient and had my LVAD for 4 years. My wife worked from home and helped at first. After a short time I was able to be on my on. There are some limitations at first. Not being able to drive, showering and dressing changes. We never felt the need to have a nurse or was worried about leaving me to do some errands. It is good for you to do the dressing changes at first for a few reasons. Infection in one of the biggest concerns and a second pair of eyes performing the dressing changes is a good idea. I do my most of the time but will have my wife do them from time to time to keep an eye on things. You will do the changes daily for a good while then they will spread out. I do mine once every 3 or 4 days now, or after showering. I would suggest not to allow to shower or bath in the beginning without someone being at the house, but that is my advice. Feel free to shoot me a email if you have any questions. gmanvball@yahoo.com

Moprus's picture Moprus
Hi my husband remained in
Mon, 01/08/2018 - 2:28pm

Hi my husband remained in hospital for 4 months after op , once home I returned to work full time. We do dredging changes and showers in evening and he's generally ok during day never needed anyone to help in any way

frankeieio's picture frankeieio
Going through recovery right now.
Mon, 01/08/2018 - 2:38pm

I'm in the third week of my initial 30 days out of hospital recovery period right now.
My wife, my primary care giver, is a partner and office manager of a small financial consulting firm she continues to operate with her ex-husband, the firms financial adviser. I own my own small feast or famine construction concern as well. She, we, cannot afford for her to work right now.
While still in the hospital, sensing her very real stress in having to be away from running things for the office. I offered to go into said office with her to help alleviate that problem., I mostly quietly occupy a spare desk to read, write some and learn to watch movies on a laptop. Every now and then I go out into the buildings heated hallway and get a doctor ordered walk in.
Even though there is some justifiable (in my mind) unspoken hostility between the ex and I, I understand from getting repeated reassurances of my wife, it is business as usual around here.
Yesterday on Sunday, the movie 'Arrival' now available on Amazon Prime was an excellent watch out in the comfy seats of the empty waiting area. My wife, stayed on top of her duties here, playing a little catch up on the weekend.
After work we went and visited a local emergency room, the lvad hospital is 100 miles away, as a precautionary measure, when I felt some unexpected wild heart beats at the end of the movie and the end of the work day here. The ex was called to pick up and look after the twelve year old, who we left alone for the afternoon. He did.
All turned out fine, and I suppose that is another tale to tell someday.
Today, Monday I've not broken out the movie watching thing yet, but did read a convincingly good short story, by my favorite writer, Thomas McGuane. I say convincingly, because should I survive all this, a transplant is hopefully in my future, I am convinced I will never write as well as what I just read.
To make a long story story short, what you and your husband about to undertake is a special journey. A journey that may end up in him realizing good health again. A journey that not all who suffer from heart failure are privileged to make. Things will work out, sometimes unexpectedly, but that in our case so far, makes the journey that much more special.

frankeieio's picture frankeieio
Going through recovery right now.
Mon, 01/08/2018 - 2:42pm

I'm in the third week of my initial 30 days out of hospital recovery period right now.
My wife, my primary care giver, is a partner and office manager of a small financial consulting firm she continues to operate with her ex-husband, the firms financial adviser. I own my own small feast or famine construction concern as well. She, we, cannot afford for her to work right now.
While still in the hospital, sensing her very real stress in having to be away from running things for the office. I offered to go into said office with her to help alleviate that problem., I mostly quietly occupy a spare desk to read, write some and learn to watch movies on a laptop. Every now and then I go out into the buildings heated hallway and get a doctor ordered walk in.
Even though there is some justifiable (in my mind) unspoken hostility between the ex and I, I understand from getting repeated reassurances of my wife, it is business as usual around here.
Yesterday on Sunday, the movie 'Arrival' now available on Amazon Prime was an excellent watch out in the comfy seats of the empty waiting area. My wife, stayed on top of her duties here, playing a little catch up on the weekend.
After work we went and visited a local emergency room, the lvad hospital is 100 miles away, as a precautionary measure, when I felt some unexpected wild heart beats at the end of the movie and the end of the work day here. The ex was called to pick up and look after the twelve year old, who we left alone for the afternoon. He did.
All turned out fine, and I suppose that is another tale to tell someday.
Today, Monday I've not broken out the movie watching thing yet, but did read a convincingly good short story, by my favorite writer, Thomas McGuane. I say convincingly, because should I survive all this, a transplant is hopefully in my future, I am convinced I will never write as well as what I just read.
To make a long story story short, what you and your husband about to undertake is a special journey. A journey that may end up in him realizing good health again. A journey that not all who suffer from heart failure are privileged to make. Things will work out, sometimes unexpectedly, but that in our case so far, makes the journey that much more special.

Woodalyn2's picture Woodalyn2
Lvad recovery
Mon, 01/08/2018 - 3:15pm

Your husband is young ,he should be fine . But there are always risks and things can go wrong.
My husband had his surgery 10/16/17....He had no problems with his lvad. But had a lot of setbacks. He's been in rehab for little over a week. It will be 3 months on 1/16 ,,in the hospital ..He's working on getting his strength back ...My husband is 71,
For some people it is a a lot longer recovery. Lvad is his third heart surgery. The first one was 1985. It was a auto accident . Ruptured his Aorta. He was home in 2 wks. He recovered for 6 wks in a hospital bed at home because he broke his pelvis on both sides . He made a full recovery.

ESSLVAD Mom's picture ESSLVAD Mom
Importance of LVAD caregiving
Mon, 01/08/2018 - 4:41pm

A lot depends on the condition of the patient. My patient had End Stage Cardiomyopathy. We were well trained by the LVAD Team in all aspects of the care. Generally hospitals will not implant until dedicated caregiving has been established. Considering the Sternotomy care which restricts full arm usefulness for about two months, Driveline care which requires ultimate sterility, meal prep while dangling the equipment pouch, medication regimen, personal laundry, care of the home which should be kept clean, attention to equipment being worn and being charged, ordering of meds and dressing supplies, changing bed linen, staying on top of hydration status, procuring groceries, getting to Cardiac Rehab.
Our LVAD team restricted sitting in a car to the back seat. Patient cannot use a vacuum. Weight carrying limit. Attention to bathing without electrocution or damage to equipment. No bending below the waist. Weekly visits to Cardiologist. Dealing with equipment alarms. Observing proper dietary restrictions and on and on.
Equipment type may vary. We had the Heartware for 16 months and I cared for her for nine months before we both had reached a confidence level that her care could be managed by her. I fiercely defended the extreme sterility of the driveline dressing which I took care of for six of the nine months. Of course she is my 46 year old, headstrong daughter/ patient, as most Cardiac patients are not easily managed. They generally want to do things their way without giving in to what works easily. Anyway, we have arrived at the place where her heart has recovered and she was explanted two months ago. I have returned to care for her since the explantation was more challenging than the implantation.
Because I am a Critical Care RN it was easy for me to do all of this and I respect and regard very highly all of the required precautionary measures. Doctors know that success rate of recuperation without the dreaded infection of Driveline is largely dependent on the supportive care given to such patients. And by the way, Emotional support is crucial for the well being of both parties. The high level of Medical and Nursing support at INOVA is responsible for our clinical success today.
I highly recommend having someone with your patient at all times until guided by the team to loosen up.

Cindylouwill's picture Cindylouwill
LVAD Care
Mon, 01/08/2018 - 4:55pm

My husband whom is almost 61 has had his LVAD for over two years and it probably depends on the individual how much care he needs. He actually returned to work within a few months of getting it, but he is self employeed and has a desk job. I’m not going to lie, at first it was overwhelming. I did quit working but I worked over 60 hours a week and just couldn’t keep up. Don’t over think it, just have a plan in place if you feel you need it. I think you could do it and he probably could watch the kids, cook, etc after a couple of months. He won’t be able to lift anything for quite awhile, so if they need to be carried he won’t be able to do it. The dressing changing is not that time consuming but cooking without salt is difficult as pretty much everything has to be homemade because they put so much sodium in everything. My husband has always used the bathroom and showered on his own. Hope this helps.
If you have any questions please feel free to reach out to me. My email is cindylouwill@gmail.com

aglover's picture aglover
Reliance on caregiver
Mon, 01/08/2018 - 9:42pm

Hi, I have been reading some of the post with regards to maintenance after LVAD has been implanted, as a caregiver, the whole situation have been overwhelming with constant hospital visit, stay at hospital, administration of medication, weekly blood work and infection. My husband has been implanted since May 2017, I must say it has not been a very smooth journey for us. Everyone have different experiences, if your husband is quite healthy, the transition of caring for the LVAD receipient should not bee to demanding. In the case of my husband, the journey have been very rough. My husband had to have 2 types of antibiotics administered to him daily for 3 months. He has been admitted in the hospital 3 times in the last seven months. Loss of appetite, fatigue, can't walk very far. As we speak, he was admitted on New Years day 2018 and is still in the hospital.

We have a nurse who would come in every day to ad mister the antibiotics and do the dressing, I one the other hand does all the planning for his medications and visits to the LVAD team and blood work weekly. You will notice mood swings in the beginning but medication helps. My husband finds the managing of his device is quite a task and the equipment is heavy to carry. As the caregiver I would highly recommend reaching out to family and friends, if your husband is quite independent and willing to take on some of the responsibilities, then you should be Ok. Some LVAD recipient can do very well while others can have strokes where they are bed ridden. I will admit that it is extremely stressful for the caregiver and definitely reach out to your LVAD team and join groups, I am with the LVAD caregiver group on FB, it is a closed site, no one sees your personal question, a good network to be part of, you will learn a lot and if you need to vent, there are lots of support for you.

Best regards,
Ann

Beth Samson's picture Beth Samson
Care giver expectations
Tue, 01/16/2018 - 3:48pm

My husband had a heartware LVAD implanted Nov. 30, 2016 at UPenn Hospital in Philadelphia. He is 53. I was quite overwhelmed in the beginning. Dressing changes made me quite nervous, although nursing staff & LVAD coordinators were very helpful, patient & understanding. One coordinator told me it is often more difficult for the caregiver, in some ways, than the patient. I have
come a long way & it didn't take me long to build my confidence. My husband is not permitted to change dressing himself. We do them weekly now. I did not hire a caregiver & I work FT. My husband is a high school teacher & was able to return to teaching. He is currently on short term disability due to some complications not related to LVAD - he had a kidney removed 3 months prior to LVAD placement due to a tumor. 2 tumors were recently removed from his bladder, requiring the short term disability, but hopes to return to teaching in April. It has been a tough road, BUT he has had no complications from LVAD itself. It took some time to adjust to the "new normal," but he is doing very well with it - it's the kidney that set him back. I also, very quickly, learned to accept offers of help, whether it was yard work, help with meals or stay with him those first 30 days to run errands. He is by himself now, fairly often & my role has shifted as he has become very independent. Wish you best as your family travels this journey!!!