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Amy N. Caregiver

Stroke

Mon, 04/01/2019 - 3:59PM

 My dad had an lvad placed a month ago and had internal bleeding that led to a stroke. Has anyone else had issues with surgery? He is 74 and having a rough time, he has a Trach and still dependent on the ventilator. Does anyone have stories where they had issues and it took a long time to recover? 

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Amy K.

Mon, 04/08/2019 - 5:01PM

my husband had a mild stroke during surgery also kidney failure and staff infection. Spent 9 wks in hospital. He’s home 7 months now and doing pretty well. It’s a tough road with a long recovery. Hang in there. 

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Amy N.

Mon, 04/08/2019 - 6:54PM

Thank you for responding! How do you cope with all the ups and downs? I think we thought it would be surgery and then he would come home after a short stint in rehab. We are far from that.  Did he need intense therapy? I appreciate any advice. Thank you. 

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Anonymous

Mon, 04/08/2019 - 7:11PM

Amy I thought the same. My husband can't drive, cook take a shower or bath his self. I have to meal prep. Get him up and dressed before I go to work. I had to purchase an adjustable bed which I love. Caregiving is stressful. My husband is 6'2 and 220 lb.

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Amy N.

Mon, 04/08/2019 - 7:20PM

Dear Traci , 

Do you have care for your husband while you work? Depending on how my dad does we will have to get care. What deficits did he have if you don’t mind me asking. You’re amazing to do this for your husband. There’s so much I’d love to,ask but don’t want to pry too much. I know everyone’s recovery is different.  

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Anonymous

Mon, 04/08/2019 - 7:45PM

Amy, I did family leave when he came home. They paid only six weeks that was equal to 2 days salary a week. My insurance with his Medicare does not pay for home care. He is home alone from 7:10 am until 4:30 pm. Monday thru Friday.  If he was on Medicaid he would qualify for home care.  My husband is 61 I am 48. This is really rough for me. He has some memory loss.  Our sex life done. I gave to take off every time there is a doctor's appointment.  I have no life.

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Amy K.

Wed, 04/10/2019 - 4:38PM

He had intense pt in hospital, 6 weeks homecare OT and PT and is now in 7th week of 12 in cardiac rehab. You ask how do I cope. A lot of prayer from friends, family and beyond that. A great lvad team and I guess just excepting our new reality. I don’t think this road will ever be easy. My husband had a great sense of humor. I think that helps too!

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Anonymous

Mon, 04/08/2019 - 5:31PM

My husband had a stroke 10 days into recovery.  LVAD was implanted on August 24, 2018 and on September 4 2018 he had an Ischemic and Hemmoragic Stroke. That day changed our life forever. My husband was in hospital since July 19, 2019. He was listed waiting for a heart. His pressures became critical. So they had to do LVAD or he would die. He was in rehabilitation from October 1, 2018 until January 9, 2019. Plus two hospital stays within that time. 

 

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Amy N.

Mon, 04/08/2019 - 6:59PM

Thank you for sharing your story. My dad had an ischemic stroke 7 days after the lvad was placed. This has affected his vision, left side and speech. He will go to a long term rehab to hopefully get back to a better baseline then what he has now.  I am overwhelmed with uncertainty of all of this, as I am sure you were also. How do you through all of this? 

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Cimara V.

Mon, 04/08/2019 - 9:57PM

Hello,

I am so sorry to hear about your dad.  My LVAD was placed on January 3 od this year and I am on my 3rd admission due to bleeding.  I have not had a stroke.  However, I was advised by my LVAD team that bleeding is common for LVAD patients.

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Amy N.

Sat, 04/13/2019 - 5:47PM

Hi Cimara, I have heard that there is chance with the lvad to have bleeding. How do you manage? I wish you the best. I know no one thinks this will happen, my dad assumed he would be the guy on the pamphlet after the procedure. Are you doing any better? 

Amy 

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Amy N.

Fri, 06/21/2019 - 8:45AM

My dad lost his battle with heart failure and died June 18, 2019. There are no words to express the deep sadness I feel. Due to the bleeding after surgery and him having a stroke due to the surgery of the lvad he never could function independently again. I pray for anyone who thinks of getting this device to really, really think about the very serious complications that do arise from this device. They are not all rosie stories! More education with the patient and family needs  to happen  before someone jumps in and gets the device. 

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Steve P.

Mon, 06/24/2019 - 1:34PM

My husband and I traveled hundreds of miles to different hospitals & doctors in an effort to treat his worsening CHF.  Steve was ultimately NOT approved for a LVAD, unfortunately & spent his last year on an infusion device..  As sad as this was, his nurse - she worked regularly with the failed (!) LVAD cases - told us that, given his condition, his portable infusion pump may actually have turned out to be the better option. For him, anyway. Who knows...

 

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Babatunde O.

Mon, 06/24/2019 - 10:24AM

My daughter was born with dikated cardiomyopathy, which has been managed with medication until recently.

She was on death's door and was fast tracked for the LVAD operation in May'19. She also had multiple issues with bleeding and had 3 additional surgeries over 4 days to correct this.

She is now stable and started physio to regain her mobility, having lost loads of weight and muscles.

I was empowered to share this when I read the stories on the forum, my daughter is 11 years and had op at GOSH, UK. I really grateful for the LVAD, we had no other option whilst waiting for a future organ transplant.