Tuesday, July 31, 2012

Legoland, two visits, 14 months apart.

May 2011 visit to Legoland

The picture to the right is my family of four at Legoland in southern California.  It was taken May 2011 before Kevin was even put on the transplant list. A time that literally feels like we were in a galaxy far far away.....

July 2012 visit to Legoland

The picture to the left is us once again at Legoland but taken just a couple weeks ago. 

In looking at this picture compared to the one taken last year, I think to myself how much the four of us have grown, both physically and emotionally. The challenges we overcame and the triumphs that brought us to tears.

In a geeky Star Wars kind of way of thinking though.... In 2011 we were posed in front of the "A New Hope" Lego exhibit. Clearly hope is what we were living on. In 2012 we were posed in front of the "Empire Strikes Back" Lego exhibit, the Battle of Hoth to be exact. Yes, we battled and won with the help of our donor family....then struck back because if a failing heart couldn't stop us then a tumor wasn't going to either. 

The force is strong with my family.

Wednesday, July 4, 2012


In July 2006 I was about eight or nine weeks pregnant with our boys. Kevin and I went to the doctor for a routine ultrasound to make sure everything was alright and going as planned. Much to our surprise it was the day we heard both of their heartbeats. We were in awe of the little thump thump thump thumps. As I'm sure every parent reading this can absolutely relate with me when I say that the second I heard those hearts beating, I fell instantly in love twice over. 

For those that are LVAD patients or caregivers you know what the sound is when you put your head to an LVAD'ers chest. Sometimes if you're lucky you can hear the heart beating with the LVAD pumping. At night I was always able to hear the LVAD while he was sleeping. I could hear the high pitch spinning of it when Kevin entered certain rooms in our house. Our boys would always ask to listen to Daddy's LVAD and then proclaim "I hear it working. You're good Daddy."

Fast forward to July 2011, only two weeks post heart transplant. One of our boys walks into our bedroom and asks Kevin "Daddy can I listen to your new heart beating?" After the initial tears in my eyes I was lucky enough to catch it on camera. He lay there listening for about five minutes and afterwards our son was grinning from ear to ear. One of the sweetest moments post transplant. 

From time to time, our boys will ask to listen to "Daddy's heart" and Kevin's answer is always yes. I have to admit I enjoy listening to Kevin's heart beating. It actually distracts me if we're on the sofa watching TV and I'm leaning up against him...I lose sight of what we're watching and focus on the beats...thump thump thump thump.

What am I trying to say here? I think our son fell in love with Daddy's new heart just like we did when we heard his heart beating only five years earlier. 


Tuesday, July 3, 2012

the healing process

"Learning to live post transplant, in most ways is like healing. It all takes time."

Today is July 3, 2012.  In just two days my husband will be one year post heart transplant. While I am absolutely elated that we’ve made it to this monumental point in living post transplant, I feel like blogging about my own healing process as a caregiver this past year. 

It’s definitely been an interesting year for sure. Quick recap - One new heart. One rare tumor. One challenging arm surgery. Thirteen right heart catheterizations and heart biopsies with even more clinic visits. One patient. One caregiver. Husband and wife. Me and Kev. And the two that keep us going, our boys.

I can honestly say at most times survival mode kicked in and I became comfortably numb so to speak. No, I did not take Valium, xanax, anti-depressants, or any medications for that matter. Yes, at times I did drown my worries in the bottom of a wine bottle. Don’t  judge me. I’ve discussed this before in my blog: http://livingposttransplant.blogspot.com/2011/11/letting-go-finding-me.html Please be patient with me, I'm trying my best to elaborate.

About three months post transplant, I had to face it all. The nightmares started. Flashbacks. Everything that was ever used by a visitor in my house was thrown in the garbage. Most of my clothes started to smell like the hospital to me. Shoes brought back bad memories. All of it, garbage. Kevin thought I was crazy but my friends reassured me it was very normal to be experiencing these feelings. I didn’t know what to do with myself, with all the free time I suddenly had once again. I started working out four and five times a week, which I now know was just a distraction to facing it all head on. 

About eight months post transplant, Kevin had his arm surgery. You know, the surgery I promised would happen way back when he had his LVAD. It was a success. I mean, talk about relief, right? Well, two weeks after this surgery my boss sends me on a trip to Italy. Yes, travelling is a part of my job. I hadn’t been away for nearly 17 months. My friend Gina drove me to the airport. If you live in Los Angeles you’ll know how far it is from our house to the Balboa Blvd exit on the 101. I cried uncontrollably and hyperventilated for that long. Leaving Kevin, our boys, it was something I needed to do but was so very afraid. Death was no longer knocking on our door (knock on wood). I was in need of re-gaining my independence, my confidence, my love for travel again. Italy gave it back to me.

So there I was June 2012, thinking it was over. That the healing was over, the pain was gone. I was so very wrong. The thought of our vacation back east started to haunt me. I had this fear of seeing certain people. I feared them because we hadn’t seen them since Kevin had heart failure. I didn’t want to re-live it all again. The look in their eyes, I didn’t want to deal honestly. When we arrived on the east coast, I soon realized that my fear was ridiculous. Seeing my in laws in their house, my parents, both of our families gathering around a table, visiting our married place …and finally,  being in the state where my tough “Jersey girl” comes from…I needed it. All of it. It was all the missing link in my healing process. And I returned home to Los Angeles feeling rejuvenated and feeling like me again.

he stole my heart 15 years ago. 
In looking back at the past year I'm not sure I would have done anything different. It all had to happen, it had to be what it was in order for me to heal. Yes, certain places, people and things will spark a memory, both good and bad. Healing takes time. I must take my own advice. For now, I will continue to live in the moment, love, laugh whenever possible, pay it forward, eat guacamole whenever possible, and I will continue to live post transplant with the love of my life who makes me feel like the luckiest girl alive.