I know I should change the name of my blog. I know. Before I do so it only seems fitting that one of my last entries under this title (living with an lvad, a caregiver's perspective) be dedicated to my LVAD besties and the LVAD families we've met both online and at the hospital.
When this whole journey started back in October I knew of no one with an LVAD. Not a soul. Which also meant I didn't know anyone that was an LVAD caregiver either. Both Kevin and I were unable to attend VAD support groups at our hospital because they were in conflict with preschool drop-off/events. And personally speaking, our boys are our number one priority. Being there for them during a Holiday performance or watching them ride in a trike-a-thon...well, that's more important. Besides, moments like those we'll never get back. Meeting LVAD'ers in VAD clinic waiting room really never happened for us because our wait (luckily) was never that long or we were too busy being silly in the waiting room posting funny pictures of us online. :-)
Ok wait, rewind a couple of sentences. I did meet a former LVAD'er when Kevin was still fighting for his life. This former LVAD'er, Marty, is a volunteer at our hospital. He also happened to be the only volunteer that I let walk into Kevin's room in the CSICU. He must've heard from other volunteers that I didn't want to be bothered... I mean really now.. they would all walk into Kevin's room, I'd be bedside with tears streaming down my face & their opening line was "is he listed? you know I'm a transplant recipient." My reply was always "did you have an LVAD?" Their reply was always "No" and I would politely ask them to leave and I would continue crying. Was that bitchy? Maybe, but my husband was pretty much non-responsive for over a week (before & after LVAD implant) and my life was upside down. Do you think my reply was bitchy now? Back to Marty... now he was different. He had a calmness about him... he walked into Kevin's room, handed me a tissue, put his hand on my shoulder, and said "I'm a former LVAD'er and a recent transplant recipient." He won me over instantly. Made me feel like things would get better and if you know our story... things did get better. We're presently eight weeks post transplant. He was always there, always smiling, always offering up assistance during the entire LVAD experience. Day of transplant... he was one of our Cedars Sinai family members that sat with me in the waiting room. He also greets us at every biopsy appointment. Marty also volunteered to work the Donate Life table at our Cedars Sinai hosted blood drive. Needless to say, Marty holds a special place in my heart.
As time went on I searched online and found LVAD Caregivers on Facebook. FINALLY, people who knew where I was coming from. Then I found From the Bottom of my LVAD, Life with a Heartmate 2. Then LVAD Friends. Finding these groups was such an eye opener for me. Such a relief to be able to post a question, thought, worry, or a problem and know that I WASN'T alone. From the very beginning there was never anyone who knew what we were dealing with at home on a daily basis. So, understandably, for me, finding these groups was like finding a pot of gold at the end of a rainbow.
Through these outlets I was able to make some wonderful friendships, meet some wonderful caregivers as well as LVAD'ers. We all have different backgrounds, different hospitals, all unique situations, and different challenges with one thing in common.... the LVAD (left ventricular assist device). Each LVAD'er is amazing and their caregiver just the same. I've seen some go from LVAD to transplant (just like us), seen them go through pump failure, infections, triumphs, those still waiting for their call, those that choose the LVAD as their destination therapy, and very sadly have also seen some lose their battle.
Each of these wonderful people have opened their hearts and their LVAD pumping hearts, to me and my husband. From the moment I would post onto each group page someone was always there reading, listening, and replying to my every worry. They were there when we got the call and they continue to be there now because we've grown so close. I'm sure I've said thank you to these LVAD'ers, their caregivers, and our LVAD family...but I'd like to do it just one last time via my blog....
Thank you LVAD Caregivers, From the Bottom of my LVAD, Life with a Heartmate 2, LVAD Friends and to those LVAD families at our hospital. While I wish I would have found you earlier...I certainly am glad I found you when I did. Your support and love at every hour of the day will never be forgotten. From the bottom of my heart and Kevin's new one...thank you.
To my LVAD besties......my Steel Magnolias.....the core of our LVAD family....you know who you are. Thank you very much for being you and letting me be me. Thank you for understanding when I vent, for crying along with me, and for cheering me on when I needed it most. I cannot wait until the day we're all sitting around the same table eating a piece of that armadillo cake laughing about anything & everything.