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Melissa S. Medical Professional

Would love your help!

Tue, 07/22/2014 - 12:19AM

Hi all!

I am an occupational therapy student working at an inpatient hospital and doing an inservice for the rehab staff about LVADs. I am very curious to know how having an LVAD effects your every day life. If you can answer as many of these questions as you can, I would be very grateful!!

1. What would you tell a new LVAD patient about life after returning home from the hospital with an LVAD?

2. What kinds of tips and tricks have you discovered while living with the LVAD that you didn't learn at the hospital?

3. Are you able to participate in more of your hobbies after your VAD than you were before? Please list some of these hobbies!

4. How often do you find yourself limiting any activities of daily living because of your VAD? If often, please explain why.

5. How confident did you feel in managing your VAD for battery exchange, stabilization of your drive line, and controller positioning?

Any information that you can give me would be great!! Thank you in advance!!

Melissa

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Rob J.

Sun, 07/27/2014 - 1:06AM

Hey, I have had my LVAD for 2 1/2+ years. I was scared and skeptical at first, but I trusted my doctors and my wife (caregiver).

1. Take your time. Relearn "normal". Take the time to feel what is happening in your body, when you feel a new sensation try and understand why. Remember the training on the device and the dressing changes and don't take any shortcuts. The device should truly be treated as a life line. Routine will be important, no more just popping in for a quick shower... (My biggest reality shock). Once you relearn normal you can start seeing openings for other activities and gauge better your level of energy. Sleep can be tricky at first, but don't panic and take the time to relearn. Remember, naps are ok :). Once you feeling able join a cardiac rehab regiment.

2. Just be prepared and think through possible scenarios. Have a bag packed of LVAD supplies and dressing changes so when you do go somewhere you won't have to spend eternity packing your gear. I also have a reserve of dressing change materials for that emergency situation where an order of supplies either is late of only partially arrives. Have your backup bag near you always.

3. For me some of my hobbies fell away due to energy levels. For instance playing my horn was extremely hard, but no fault of the LVAD, that was due to heart failure symptoms. I did pick up a new hobby/ interest in cooking. Due to diet restrictions good food was hard to come by, so I was bound and determined to make my own food that was still savory but fit in my sodium and warfarin restrictions.

4. Like before my LVAD primarily restricts me from taking showers the way I used to. Now showering is a procedure that involves prepping the dressing, showering, and then changing the dressing afterwards to avoid moisture on the site.

Sleeping was another hard one at first... On my back I felt a little short of breath --- on my right side I was lying on top of my drive line --- on my left side I could feel the weight of the pump against my lung --- then the side of the bed became important. On the one side my equipment was between me and my wife creating a barrier, on the other side it was in a precarious place of being near the edge and could fall. (Ouch). This was a mind over matter situation.... I had to sleep, so I had to accept certain unideal options. However, I am ever mindful of where My driveline and equipment are even to eyeball it in the middle of the night and pull it close. Last note about sleeping my doctors never mentioned anything about overheating of the device, and I still haven't officially asked them, but I noticed my controller getting a little warm in its carrying bag so I knew it probably wasn't a good idea to have it under the covers. My solutions I sleep with 2 blankets, or on the end where it can lay outside the covers while I stay warm.

Other activities were mainly how I helped out around the house, I use to love vacuuming but with that restricted I find other ways to help out, like dishes. I can start laundry, but I can't do the dryer stage. Pretty much anything that has high risk of static shock I have to avoid.

5. I felt very confident. It is a special relationship you develop with the caregiver. For me and my wife we promised each other to do this by the book! It is to important not to. We practiced, we filmed the doctors doing it and we did it until now when we have to go to the hospital for any reason my wife won't let the nurses change my dressing, we much rather do it ourselves b/c we know we have the pact. For battery exchange just WAKE UP before messing with them or you could do as I have done a few times and inadvertently unplug both batteries. Believe me, you'll wake up pretty fast after doing that. Controller positioning has been constant tweaking. Everyone's comfort zone is different. I try an dun mount my straps whenever I can, b/c it does start pulling on the shoulder. Continue looking for comfortable, reliable carrying methods.

Well, I have exhausted my insomnia and am ready for bed. If you want feel free to ask me anything else you would like to know.

I.e; getting sick with LVAD,

Having another heart surgery with an LVAD ... Etc.

Truly,

- Rob Johnson

Destination LVAD recipient 2 1/2+ years

Heartware 12/30/11