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Sophie F. Friend

Design to Improve the LVAD Experience

Thu, 06/27/2019 - 12:16PM

Hi everyone!

My name is Sophie and I am an industrial design student at the University of Cincinnati. I have recently been made aware from a close friend how difficult it is to live a healthy active lifestyle with a LVAD, and am passionate about using my education and resources to help alleviate some of these pain points in your everyday lives. If anyone would be willing to connect or simply comment on this post, I would love to learn any insights from patients, family members and friends about the experience of using an VAD and any areas, from your point of view, that could potentially be improved upon to make this experience better. 

Regardless, thank you for reading! If you have any questions or comments,
feel free to email me: fainsl@mail.uc.edu

Thank you! 

178 reads
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Lisa J.

Thu, 06/27/2019 - 11:06PM

Hi Sophie,

i definitely encourage you to help improve the lifestyle with an lvad!  Thank you for the effort. 

First and foremost a cord coming out of you abdomen is not practical when trying to be active.  Sweating is an issue during work outs and hot days. My bandage does not stay put.  Just waiting to get an infection  

I hate carrying the batteries around.  I can carry small computer (aka my phone) that weighs nothing and for my lvad I have to carry batteries that are as heavy as a watermelon.  

 I am 52 and female. The clothing made is not for women. I have a small frame compared to males and the vest and shirts don’t work. Currently I am designing undergarments so I don’t have to carry a backpack all the time. It is horrible on my back.  I also grieve for all my clothes  I can’t wear. 

It also bums me out I can’t swim, ski or kayak.   I also love  to cook but my back limits the amount of standing time because of the batteries.  

My mom has to remind me my batteries are better than a casket and I agree  

I live in Columbus if you need more info I would be happy to help.  Good luck  

Lisa 

 

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Sophie F.

Mon, 07/01/2019 - 10:21AM

Thank you so much for sharing your experience, Lisa! I appreciate you sharing this! If you have any other insights or comments, don't hesitate to email me. Thank you again!

sleefain@gmail.com

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Debra K.

Mon, 07/01/2019 - 5:53PM

Hi Lisa,

I've had my Lvad since April of 2016. Last year I suffered a small stroke and brain bleed. I got dizzy and fell. Since then my neck, back shoulders are compromised. I also have an issue with the extremely heavy batteries.  When I'm at home I stay plugged into wall power. Yeah, I can't reach all sections of the house and yes I'm on a leash, so to speak. I only carry batteries when leaving the house. I carry a cross body purse.Yeah, still heavy but I can cope until I return home. I also miss out on swimming,  etc. I live on a river. Used to fish out of boat alot. Now it's very few and far between. Positivity is very important Hope this helps. 

 

Deb

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Julia K.

Mon, 07/01/2019 - 1:48PM

Sure!  So glad you're helping the LVAD community.  My husband received his LVAD 5 years ago and has had no issues with it at all.  We've tried many things and are always looking for new clothing, vests, undershirts and sleeping aids.

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Mark H.

Mon, 07/01/2019 - 7:57PM

i would love to go over a few things that need tweaking with the LVAD equipment. 

1. The batterie clips. 

I wore cargo pants and put the batteries in my pockets. After a short period of time the clips would become just a little loose on the battery and cause an alarm to intermittently go off.

i found a fix for this. I would stick a “ pampered chef “ food scraper between the battery and the clip ( taking up the looseness in the clip. Worked great. Never had another false alarm. 

2. The batteries and controller.

At times ( like getting out of a shower ) you find yourself goggling both batteries and the controller and having this fear that you are going to drop them .( pulling on the cord) it might help if the batteries or clips were made so that they could clip together if needed to be. ( to possibly free up one hand. 

3. Possibly design a smaller emergency back up battery that ( a two hour battery) could be carried more easily and be lighter . ( for things such as showering , exercising, or doing other physical activities around the house. ) . 

I would love to go over or help more with this. If I could be of any help . Just respond back to this message or email me . Mehubert1@live.com.