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Arlen S. Prospective Patient

8 weeks with LVAD

Sun, 03/17/2019 - 4:59PM

It has now been eight weeks since my LVAD implantation and life has been going reasonably well since my surgery.  Two weeks in the hospital, one week in a motel adjacent to the hospital, five weeks at home.  My caregiver returned to his family last week so I am now on my own.  I will be starting back to work full-time this week.  (My job entails meetings and sitting behind a computer.)  The daily dressing changes and other tasks associated with the equipment are already getting old.  But, I am trying to work out a routine to minimize the hassle.  Now I just have to be patient for the next step.

645 reads
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Mariza M.

Mon, 03/18/2019 - 1:11PM

Congratulations!!! Your recovery is fantastic! I took almost 1 year and a half to get an almost normal life, but even after 3 years I still have a caregiver to help me on shower and dressing. The evolution after a LVAD implantation is quite individual and multifactorial. Hope you keep going strong in your new life.

Mariza

Brazil

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Amy K.

Mon, 03/18/2019 - 1:21PM

congratulations! That is a quick recovery. Soon you’ll be at changing the dressing just once a week. Talk to your team because you should be doing that now. 

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Joyce T.

Mon, 04/01/2019 - 12:44PM
  • If you try to change your bandage and clean your driveline. You will get an infection.  Don’t do anything like that until you speak with your LVAD team. I’m sure if they are good at their job they will tell you clean and change your bandage everyday.  My husband takes very good care of his driveline , takes his medicine on time and writes down his numbers from his controller everyday. It may take 30 minutes out of your day but thank god you are still alive and able to work. Just take care of your equipment and take your weight, tempsture, blood pressure, and drink plenty of water and you should be just fine. Good luck and use your LVAD team for help. That is what they are there for
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Anonymous

Mon, 03/18/2019 - 4:58PM

I was 3 weeks in the hospital  and then a month near the hospital.  Some things to keep in mind:  A recent study had 33% of LVAD recepients having driveline infections in 1 year and !00% by 10 years.  Once you get an infection, you have it for life unless they exchange your LVAD.  I made it 1 1/3 years.  I rototilled the garden and worked up a big sweat.  I didn't think to take a shower at that point and change my dressing again.  The next day I had the start of an infection.  Sweat is our enemy, and if you work up a sweat on your abdomin make sure you deal with it right away.

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Donald H.

Sat, 03/23/2019 - 5:31PM

Wow...got my first infection after after one year. After 4 day hospital stay to treat infection, l’m on oral antibiotics since leaving hospital. Keeping site dry in shower has been very difficult. Any ideas on keeping drive line site dry... I also spend lots of time in garden.

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Larry B.

Mon, 03/25/2019 - 1:37PM

I shower every morning and have been since being released from the hospital in Oct 2016. I use two tegaderms when I shower. I use a 6x8 and overlap one end of it with a 4x4. This way I even get my foley covered. It’s been many months since I have got my dressing wet but it’s always operator error that causes it. When I make sure the overlap is properly sealed and I don’t let the shower hit directly on the dressing, I have absolutely no problems.

Keep in mind, getting ones dressing wet is very rarely the cause of driveline infections. Trauma to the driveline is the number one cause of infection. Showers are rated way down the list. Everyone that has an LVAD does not eventually get an infection. I’d like to see the study that shows everyone that’s had their vad for 10 plus years has had an infection! I don’t think it exists.

This is what is contained in the newest driveline infection studies:

RESULTS: 

Thirty-four studies focused on vulnerable host, portal of entry, and causative organism aspects of the Chain of Infection. Increased BMI, younger age, exposed driveline velour showed increased risk of infection and driveline dressing protocol change showed lower risk of infection.

 

 

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Debra K.

Mon, 04/22/2019 - 7:10PM

Hi, I'm Debra. Got my lvad 4/1/16. I was very surprised to have an infection just below the skin under my sternum. My first infection. SHIT.... I take such good care with dressing changes.. I was in the University of Chicago for a week. Somebody coughed on me... got a cold. Dang, never a dull day!😳 peeps are so darn generous,  lol I'm home with my husband now. This recovery is kicking my ass! I have to pack the gaping hole in my chest 2 times per day, If not more. It's draining like crazy🤪. I'm having difficulty getting around due to low energy. Definitely putting a Debbie downer on me cooking meals, showering, laundry...all the shit I usually do... my husband is friggin starving,  lol!

My body is deteriorating due to osteoarthritis in my knee, neck n shoulders. Unable to carry my batteries  so I'm a prisoner in my own home. See I'm confined to my leash which doesn't reach far as I need it to. Yeah, try fi doing a surgeon that will touch a lvad patient.  Nope, not out there!!!!

Never give up, never surrender!!! As much as it sucks to be me, my husband is my reason to go on❤

Hang in there guys n gals...we're still here for a reason. Later people. God bless y'all. 

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Amy K.

Mon, 04/29/2019 - 2:25PM

so sorry you’re having issues. Do you really think the infection is from sweat? That scares me because hubby got an infection in his incision while still in the hospital. Had a wound vac on for 8 weeks or so. IV antibiotics at home then on oral doxycycline for maintenance. Got his lvad 8 months ago. Thought that part was behind us. I know there is always a risk at the driveline but not elsewhere! Best of luck to you. 

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Anonymous

Mon, 04/29/2019 - 3:31PM

I do think it was from the sweat running down the driveline under the dressing.  It was an unusual infection with a bug found in garden soil and I had just rototilled the garden which is what drew the sweat.

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Larry W.

Sat, 03/23/2019 - 8:52PM

I have a heartmate II and have had it now for 2 years and 10 months. About three weeks ago around the drive line it started a small bleed. My wife went to daily dressings to see if the bleeding got worse. The doctor said he has seen this in patients with implants over two years. I asked if this ever went away and his answer was "maybe".  So,  is anyone else experiencing  this other than me?  

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Anonymous

Mon, 03/25/2019 - 7:33PM

I just passed my third anniversary in February.  I have had occasional driveline minor bleeds but it has always corrected (more occasional pink than actually bleeding_.

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Amy K.

Mon, 04/29/2019 - 2:30PM
Hubby is 8 months since lvad and just had a bleed. We were instructed the same. Changed dressing daily. All is well after a few days. I think there is always a risk because it can pull. We purchased an Lvad sleeping belt from amazon. He likes it because it keeps the controller secure while sleeping or when he’s on his cord.
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Evan S.

Mon, 03/25/2019 - 12:34PM

WOW!! I was in a coma for 30 days and in the hospital for 3 months. But the good thing is after waking up I was healed up. You sound like you doing well. But you said you’re on your own. I hope you have someone that can stop by if you need someone. And or have a button to get help. They have ones that you don’t have to pay a monthly fee. Or if you have a smartphone you can get free apps. Just in case. It’s always good to have a plane B.

look forward to hearing more about you.

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Donald H.

Mon, 03/25/2019 - 1:54PM

Thanks million....best source of info on infection & drive line care in shower. Thanks again.

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Donald H.

Mon, 03/25/2019 - 1:54PM

Thanks million....best source of info on infection & drive line care in shower. Thanks again.

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Debra K.

Tue, 04/23/2019 - 1:03PM

Richard,

I remove my regular dressing and put the waterproof bandage on with my driveline along the bottom edge of the bandage. After showering I do my regular dressing. Hope this helps.