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echo s. Family Member

caregiver

Hi my ex husband is having an LVAD this wk.  He has asked me to be a caregiver.  I have researched much information, however I have not been able to find out much about what role caregiver takes.  If anyone could tell me what to expect I would greatly appreciate it and any advice.  Thank-you 

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Ann G.

Depends on how he is after surgery.  My husband was in hospital for almost 5 months

needed lots of help, still does due to suffering a stroke during surgery.

Almost like having a baby to care for!

Good luck!

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Albert B.

Depending on what they need for support you probably have to do a lot for them at first 

they will have to build there strength up continue to exercise  let them try to do thing first  then step in if they can’t do it 

we were told for every day in bed takes 3 days of physical therapy to recover 

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june B.

Hi Echo S!

I have been the caregiver for my sister who has an LVAD for a year and a half. I am glad that I have been there for her but it is an awesome responsibility. If classes are offered, make sure that you attend. Even though I went, I still don't think that I was fully prepared for what was to come.

When my sister first came home, she was walking slowly with a walker but she was in constant pain. It was hard for me to see her like that but I prayed constantly for the strength to get us through. I fixed her food which she sometimes ate and sometimes would not eat. Don't get discouraged, just try to keep your loved one hydrated. I was responsible for making sure she took her medicine on time throughout the day. Number each medicine bottle and make a chart with which medicine to take and when. That makes it so easy to keep track. When she first got home, I slept right in the room beside her. When she was feeling better, I got a baby monitor and moved upstairs to my bedroom. I could still keep an ear out for her. 

My main suggestion is to just be patient. Your loved one has been through major surgery and it will take awhile for her/him to heal. Now my sister is pretty much on her own. She comes and goes as she pleases and enjoys her independence once again. However, I am still there to love, help and support her.

My sister was and still is an awesome caregiver!

Best of luck on your journey.

Blessings,

June B.

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Bobby P.

I'm my husband's caregiver. I pretty much do everything for him that he can't, or struggles with. It's a 24-7 position. Some days are harder than others, but it us so worth it. So much do keep track of, like meds., INR for correct dose of Warfin, dr. appointments, dressing changes, diet, and the list goes on. As a "Caregiver" you have to be familiar with all aspects of an LVAD. At times, you must be their voice. What I mean is, speak up and loudly when necessary. Be prepared for an emergency at all times. Always have a plan A and plan B. When in doubt, call the LVAD on call coordinator, they're the best!!! 

One word of advice, don't panic. Stay calm and know you're doing everything you can for the lvad patient.

Signed,

Nina Perse

(Bob's wife)

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Bryan L.

Hello. My husband recently had  LVAD placed. He has been home for a few months now. I am wanting to become the "formal" caregiver instead of the "informal" caregiver. "Informal" means no pay and "Formal" means with pay. (Just incase some of yaw didn't know the difference) I was working, but had to loose several hours so I can be home. I heard that I could be paid to take care of him. But I don't know what company is the right one to go through....If anyone has any advice I would appreciate some....Thanks....Becky.  

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In reply to by Bryan L.

Bobby P.

Contact your LVAD social worker, she/he will be able to help you with the form. We just recently applied ourselves. It can take 2-4 weeks to process, is what we were told. Just make sure it's filled out correctly or you will be  denied and have to appeal or reapply.

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Diane P.

I am my husband's caregiver.  I help put his belt back on after he uses the bathroom.  He chose the belt vs other ways.  I just do what he needs.  It can be very stressful but I do what is necessary to help him.  

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Diane P.

I am my husband's caregiver.  I help put his belt back on after he uses the bathroom.  He chose the belt vs other ways.  I just do what he needs.  It can be very stressful but I do what is necessary to help him.  

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Marilyn D.

Have you become his care partner? If not I need to tell you about it, if so then I guess you know 😉

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Barry and Susan (caregiver) S.

whatever is necessary.  It’s 24/7.  

Just to be truthful, our love for each other over the last three years is stronger than it was.  Life changes, but it can be good.  Things are going to change.

My husband his destination HM2 surgery in oct. 2016.  He had to have a replacement 5 days later , Thrombosis on the pump.  He was in the hospital 61 days.  His age is 74.  There has been some events due to the Lvad, but nothing basically faulty with it.  He recently had an alarm go off and he stopped breathing , was unconscious for 1 minute. His pump stopped and there was no blood being pumped.   I am his wife and caregiver, very scary.  Did the steps, called the team, he did come back to me.  He was hospitalized at Mayo in Pheonix , for what they call “short to shield “.  They preformed an external percutaneous lead replacement , this did not solve the problem ,when returned to grounded cable.  He was discharged with a power module and a non-grounded cable.  We will be replacing his pump again due to continued wiring damage progression. 

I, Susan would like to know if any other Lvad patient has experienced this.

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MIke S.

I got my LVAD about four years ago. I am 82 years old and my wife is my caregiver. Initially, there was a lot of caregiving necessary due to problems with the surgery, but that settled out after a few months. As my caregiver, she now changes my driveline dressing once a week,  keeps track of my pills, and checks my INR once a week. I'm a little feeble, so she also does more than her share of the house cleaning. She helps me in many other ways, too, but they don't have to do with my LVAD.

Changing the dressing is the biggest job she has to do for me. It has to be done under sterile conditions, so there was a bit of stress originally, but it has become a routine procedure with repetition. 

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In reply to by MIke S.

Pam J.

Wow congratulations on your LVAD!  I had never heard of someone over 71 receiving one!  Can you tell me which hospital did your implant and the criteria they used to qualify?  Again, congratulations!

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In reply to by MIke S.

Pam J.

Wow congratulations on your LVAD!  I had never heard of someone over 71 receiving one!  Can you tell me which hospital did your implant and the criteria they used to qualify?  Again, congratulations!

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In reply to by Pam J.

MIke S.

My LVAD was implanted at the Washington Hospital Center in Washington, DC. They don't do heart transplants for people over 70, so my LVAD is as Destination Therapy. 

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In reply to by Pam J.

Pennell G.

y lvad was implanted in 2011 when I was 73.  So far so good.

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In reply to by Pam J.

Pennell G.

y lvad was implanted in 2011 when I was 73.  So far so good.

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In reply to by MIke S.

Elena M.

Hello sir.

My name is Elena. My father got a LVAD implanted about 9 months ago. As you have it for four years, I was hoping you could help me understand some things about how my dad is feeling. At first he was mentally pleased with the surgery, after feeling so bad for so long, but he seems now that he is feeling down, quite redrawn and stressed. He doesn't say much about it, but he mentioned feeling like a burden for my mom and a source of stress for me and my sister. He once said there's nothing to look forward to from the future, although my sister is getting married this year.

We conjured all efforts, family and friends, to be able to get him his LVAD after we were told in our country nothing can be done for him. I was hoping to see him enjoy his time, I was hopeful that he will try to make the most of his time, but he seems to feel like less of a man or a problem for us. 

We are so happy to have him still with us and I would like to be able to help him mentally as well. He is only 54 and I hope the advancements in technology will allow him to still be with us for many years to come. I only wish that he enjoys this time. Please, sir, tell me if you had a hard time adjusting. Maybe you are able to understand his position more than any of us. Please tell me how you coped with your new situation after the implant. Any information would be helpful. 

Thank you in advance.

Best regards,

Elena

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In reply to by Elena M.

Allen's VAD B.

Hello My Name is Allen I also was 54 when my Vad was put in . I feel great with it I work two Jobs. I try and get as much exercise I can get. I admit I was a little depressed at first but now I don't let it get me down or I don't stop things that I want to do. Best Advice listen to the Doctors. I am on Face Book Allen Bourgeois If anyone has a VAD and wants to talk just friend me on Facebook.