It all started several years ago when my husband’s twin brother passed away suddenly on a baseball field. The cause of his death was ruled ‘mydocardio fibrosis.’ When this happened my husband had received all the necessary heart related tests to which they found no real issues but diagnosed him with Hypertrophic Cardiomyopathy. Our wonderful angel of a Dr. at our hospital decided to put in an ICD (implantable cardioverter-defibrillator) due to his family history (did I forget to mention his mother had a Heart Transplant?). No issues ever came to be until I was 8 months pregnant with our son and he received his first shock. We were just laying on the couch at the time watching TV. He said he felt faint and the next thing I know he was laying on the ground and I saw his body jolt.
Fast forward a few years and several shocks later………
We found ourselves in the hospital talking to the Dr.’s about being put on the Heart Transplant list and putting in an LVAD (left ventricular assist device) unit as a bridge to transplant. It was all happening so fast and I was scared. I didn’t know anything about this LVAD thing nor did I want to hear the words ‘Transplant List’ for my husband at age 35. But it needed to happen when it did. We woke up that morning and he received his final shock after getting out of bed and brushing his teeth. He couldn’t even walk to the bathroom without having his heart need to be shocked back into a normal rhythm.
He had been in and out of the hospital for several months and after receiving the LVAD he came home on my Birthday and was there to stay while we awaited a donor heart……it was the best Birthday gift EVER!
I had been on pins and needles for quite some time after he came home trying to keep the kids from bumping his chest or heaven for bid pulling on the unit, worried that the alarm was going to go off and of course the nervousness I had being in charge of changing his dressing and cleaning the driveline. Those feelings were better over time and we quickly began to get back to our lives. We weren’t going to let anything keep us away from enjoying our favorite event of the year…….The Oscars! We attended our Best Picture movie marathon the weekend(s) before the big show and we were able to get all fancy and attend the red carpet event at our local theatre. Yes, my husband in the picture above has an LVAD unit………..you can and WILL be back to doing the things you love and the LVAD unit will only make you feel better while doing them.
Only a short time after The Oscars we received the call that a donor heart was available. Once again that scared nervous feeling came rushing back. My husband would no longer have any ‘device’, there was no back up help should anything go wrong. I’ll be the first to tell you that you are not going through this alone. There is a TON of support out there for you. Ask for help, go to the support groups at your hospital if they have them. Right before the LVAD surgery our hospital actually put us in contact with a couple whom had had an LVAD and had just had a transplant…….I can’t tell you how much they have helped us through everything. We have a special bond and they will be our friends for life. I also don’t know what I would have done if it hadn’t been for my family and friends helping me along the way. The support I received from my Twins Club was immeasurable! The babysitting 24 / 7 so I can be with Eric in the hospital, the meals, the shoulders to cry on……they are amazing women, I love them so much and they will forever be in my heart.
Believe me, I still have those feelings of fear from time to time but when I see my husband being able to do the things he hasn’t been able to do in years and knowing that he’s getting stronger everyday…..it’s an amazing feeling. I think I’m going to ball my eyes out the first time he picks up a Basketball and starts playing again. A very heartfelt THANK YOU to our wonderful angel who decided to give my husband a second chance at life. May your living loved ones find strength and peace. For more information on becoming an organ donor click HERE.
Life Goes On and our new journey has begun. It’s been about 3 months since his surgery and he’s getting stronger everyday. We’ve even started to workout together! I cannot wait to see his progress. I will be updating things occasionally on my Facebook Page and of course here on my blog.
