MyLVAD Community Spotlight: Angie and Tim

This month the MyLVAD Community Spotlight features Angie and Tim. Tim was implanted with an LVAD in his early 30's due to idiopathic (unknown cause) cardiomyopathy. Angie, his wife, not only cared for him but also cared for their three young children and worked to help support their family.

Tim adjusted quickly to life with his LVAD and was able to return to work. After 6 months, his medical team discovered his heart had recovered and he was able to have his LVAD removed. Today, Tim and his heart are continuing to do well!

We asked Angie to share her reflections on what it was like to be her husband?s caregiver while juggling her other roles of mother and coworker.

Living with an LVAD? A Wife?s Perspective

No one can really prepare you for some of the fear of living with an LVAD, but with faith and God?s guidance I was able to support my husband during this very difficult time.

My husband, at 33 years of age, had an LVAD implanted. Being on this journey of Congestive Heart Failure is a battle but the LVAD is a very scary part. I remember thinking how large and scary it seemed. Wondering if I would ever be able to handle all the new medical duties and challenges the LVAD brought but it would bring my husband home and to our kids and make his life last longer. So, I quickly adjusted myself to looking at the LVAD as a life saving opportunity.

Going home was scary because I knew I was in charge.

At the same time we had a 2, 6, and 8- year old daughters. It was hard on me, and my husband when he was plugged in for the night to remember he couldn?t just get up and go to the kids. We also arranged it so he could go to our bathroom (just barely) without unplugging. Quickly rearranging the bedroom didn?t seem to matter and our room became medical central.

I remember being very stressed at night when we would do dressing changes fearing the environment wouldn?t be sterile enough or I would do something wrong especially when I was really tired.

Showering was also challenging because I had to be home to tape him up and un-tape after he was done. I also became afraid of static electricity because I feared it would stop the pump. I got a humidifier on our furnace, sprayed the entire house with static guard (daily) and began my new addition to fabric-softener.

I was also afraid of the kids being rough or hugging my husband too hard. We learned to try and be as normal as possible so they wouldn?t be afraid of new daddy.

I feel the one thing we really focused on was trying to do everything we did before the pump. Normal schedule and routines helped me stay sane. We went on a small weekend trip and let the kids play in the snow and swim and enjoy life. We went to basketball, swim-team and softball games and practices. Sometimes we forgot about the pump for a minute or so.

When they started to talk about his heart recovering they said this is not typical and we do not expect it to go any further. After 3 months of caths it was like no one knew what to do next. Everyone got really quiet and I was very scared. They always had some answer or idea and when the smart guys got quiet I was worried. When they took out the pump they told me in no uncertain terms that the pump would probably not come out and he could wake up with the same pump or another pump or in worse shape.

They never focused on the pump removal and neither did I just in case we had to continue on with the pump I wanted to be prepared to take care of my husband until transplant. When they told me the pump was removed I was very scared to hope this nightmare was over but each day I thank God for another day Tim's heart sustains him!

While Tim had the LVAD in we spent a lot of time together as a family and focused on what is really valuable to us...our kids and their future. I also learned when I needed to I was able to handle much more than I ever realized and also how much I loved my husband no matter what was going on.

MyLVAD would like to thank Angie and Tim for their willingness to share their story with the MyLVAD community. Let us know how you felt when you or your loved one came home with their LVAD for the first time by going here. http://www.mylvad.com/community/love-relationships If you would like to share your story with the MyLVAD community, send us an email at mylvad@gmail.com. We would love to make your story part of our spotlight series.