Saturday, August 27, 2011

our LVAD family

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 Steel Magnolias.....the core of our LVAD 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.

Saturday, August 20, 2011

the first six weeks....

The first six weeks. Phew....that was quick.

After the initial "WOW this has really happened" and "we really are the luckiest people alive" reactions... then set in post transplant life. I gotta tell ya it's much easier than our discharge home from living with an LVAD.  (and speaking of living with an LVAD... I've gotta change the name of my blog now, don't I?) 

Let me preface this all by saying I'm still enjoying the high of Kevin being transplanted. I guess I'll come down sooner or later but it's kind of a nice for now, I'm going to keep on enjoying. 

Kevin was transplanted on July 5. He came home eight days later, July 13. No attachments, no plugs, no batteries, no LVAD. I had gotten rid of all LVAD evidence in our house before he came home. Donated the PBU, battery charger and batteries back to the hospital. Donated our VAD supplies to another LVAD'er in need. Shower bags, vest, everything...gone.  We replaced it with new medication, anti-reject medication, more dressing supplies, and an entire binder of do's/don'ts for a fresh transplant patient. Oh forgot to mention inside the binder was a schedule of appointments for the next year. Organization. I like it.

Wondering why more dressing supplies? The day after his transplant I remember the CSICU nurse saying to me "oh I can show you how to change his dressing." My head spun around so fast you'd think you were watching that pea soup scene from The Exorcist. Sure enough there was a freaking hole right where his LVAD drive-line wire went through. The very same site that I had to previously do daily dressing changes on in our LVAD days. So, I referred to it as the LVAD hole. Doctors at our hospital wanted it to heal from the inside out. I can safely tell you that six weeks later it is healed. Goodbye sterile gloves & Iodoform.

Kev's cocktail of pills
The medications. In transplant education we were told that since Kevin was living with an LVAD, we were already pro's at "medication management." It's really only a few more pills to take per day and honestly it seems easier this time around. Sure, we had to learn the generic & brand names of all the new medications....the side effects.... but we did the exact same thing when we came home with the LVAD. It's quite a colorful cocktail of pills he has to take twice a day. Honestly, I don't know how he does husband makes it look so easy. But then again, I'm looking from the outside in...this blog is my perspective, not his.

Kev in the waiting room at clinic
The organized binder of do's and don'ts. While it was quite a lot of information to take in, it wasn't a surprise to us because we had been through transplant education back in February...and the transplant team did a great job of preparing us. No sushi. No alcohol. All of his food MUST be prepared well done. No swimming in pools just yet (but he can get wet, splashed at, & even give the boys a bath now). He can't go into crowded places for the first three months (it's not recommended by the doctors). Whenever he goes out, is at clinic, or the hospital...he must wear a mask. It's for his own good during the first three months. Our kids think it's great that Daddy gets to wear a mask. They actually made Daddy a paper mask, colored it and cute. Honestly, living with a post transplant patient is similar to bringing home newborn twins. Doing our best to keep those with germs away and Purell is everywhere in my house. We joked with people saying we were going to have one of those decontamination showers outside our front door just to be safe. We joked that I would put him in a bubble. But then again, he joked about the same thing when I was pregnant. Our souls were meant for each other.

A year of scheduled appointments = organization in my book. At least we know where we've got to be and when, right? I can prepare ahead of time and get babysitters, plan my work days around these appointments. The first month Kevin had one biopsy a week and clinic twice a week. He tells me that he's awake during biopsy. That during the biopsy he can see the doctor taking a piece of his heart. I remember a Facebook status of his "headed to biopsy where they're taking a little piece of my heart now baby." Post transplant, I am even more impressed with my husband's ability to go through all of this and still smile. Sure, he's been re-gifted life...but biopsies can't be THAT much fun, right? We are in the second month where biopsies & clinic are every other week. Once we hit September, once a month. Where has the time gone? Wasn't I just bitching about not being listed only a few months ago? Clearly I am a lucky girl....
celebrating Daddy's birthday

I'd like to just touch on the emotional part of living post transplant. The first six weeks were a cloud of excitement for sure. It hasn't been all peaches & cream though.  That LVAD hole gave us some issues once where it decided to goooosh blood during one of his biopsies (all was fine with a little pressure applied). Those new meds, the anti-reject meds to be exact, have an entire schloo of side effects....some that you just have to learn to deal.  Cabin fever...not being allowed to really "go" many places until he reaches that three month mark. So while we did have our moments where the roller-coaster dipped low,  it eventually came back up to that high of enjoyment. The first six weeks were clearly an adjustment period...just like when we first came home with the LVAD. But it all comes down to working together, figuring out how to make it work, being the team that we are.... and living each day to its fullest.

The first six weeks seem to have gone by so fast. Now that my family of four is getting closer to approaching "our normal" I am reminded that we still have one more hurdle to jump....his left arm and hand. Ya know until he gets more function back in that left hand or until a surgeon gives him that little bit of good news he's looking husband has a daily reminder of this entire heart failure experience. He has a daily reminder of what happened during those two weeks of his life that he missed. For me, I am here to make certain he gets it back. Because folks let me tell you, where there's a will, there is always a way. 

Tuesday, August 16, 2011


We are six weeks post transplant. Kevin is doing fantastic. Right where he should be. No rejection. No infection. My last blog entry was almost three weeks ago. I'm still floating on that cloud of excitement....still riding that high....enjoying each moment of normalcy that comes our way no matter how big, no matter how small. I've earned it and so have the three loves of my life. Post transplant blogging to follow. For now, this picture....

This picture here is a powerful one for me. It was taken by my friend Claire on the night Kevin received his new heart. All the hands are wearing "donate life" bracelets. All the hands belong to my dear friends, my twin mom friends. All of these wonderful women were with me in the hospital. My other twin mom friends were with our boys.

Every time I stare at this picture I absolutely start to tear up. It embodies all of what my little family of four has been through these past 9+ months. It represents the hope, the love, and the unity that carried us through.

Today, I met up with a few of these twin mom friends, kids included, at a local park. Had a great time. Lots of laughing, giggling, eating, talking, yelling, crying because someone was throwing sand or someone was not know, normal toddler playdates. All in good fun. As I was leaving I realized this was the first playdate in a long time where there was no immediate crisis looming over me or my family. No real rush to get anywhere. I reflected on the days where I really tried to have a good time but couldn't because I was so worried about Kevin or needed to pick up medication, or just needed to be in ten places at the same time. Not today. It's as if someone has pressed play on my life again. As if we were put on pause. And then when it really was just the four of us again, someone pressed play.