Saturday, December 31, 2011

Rose Bowl Parade Float

This past week my friend Claire and I had the opportunity to help decorate the Donate Life Rose Bowl parade float. The Rose Bowl Parade this year is actually on January 2, 2012.

Going into this I had no idea what to expect.

The Rose Bowl Parade was something I always watched. Never really understood how those floats got decorated or how much work really went into each individual float. Well, now I know. My day was filled with climbing scaffolding, glueing lettuce seed, standing in very small spaces, glueing hot bottled oasis on silver petal leaves, glueing crushed lentils to the side of this giant parade float, and on top of all that....the people.


Everyone that volunteered shared a common ground, organ donation. In one way or another all the volunteers were either a donor family, a transplant recipient, living donor, spouse or partner of a recipient, nurse, doctor, and those waiting for their transplant. The ones that touched my heart  & took my breath away with their generosity were the donor families. This was the part I never expected. I never expected to be face to face with a family member that made the decision to donate their loved ones organs. One in particular was a father whose 16 yr old daughter was tragically killed.  He donated her organs to save other lives. In hearing his story, how his face lit up when he talked about his daughter... I looked at him with water filling up in my eyes and thanked him for his decision to donate life. And by doing so, his daughter's spirit will not only live on through him but it will live on through all the lives saved.  Most of you know that our donor family still remains a mystery to us. I can tell you that when I looked at this father,  and when I thanked him, and reassured him how wonderful of a person he was by re-gifting life........in an odd way I actually felt closer to our donor family. 

The theme of this year's Donate Life parade float is "....One more day." How very appropriate, don't you think? Most people waiting for a new heart, lungs, liver, or kidneys unfortunately don't get one more day. Presently there are more than 100,000 men, women, and children awaiting organ transplants. Thousands more are in need of tissue and cornea transplants to restore their mobility and sight. 

Being an organ donor does save lives. My husband is living proof. My little family of four IS a story of hope.

Rock on. Donate Life. Provide HOPE for those that just want "one more day." Register to be an organ donor today: http://donatelife.net/                                                                                                   






Thursday, December 8, 2011

Somewhere over the rainbow...

Everyone knows the song, right? I remember as a kid getting all excited every time The Wizard of Oz was on TV...I couldn't wait to hear Judy Garland sing it.... I knew and still know every word. To this day every time I hear the song it brings me back to that childhood excitement, to the days when I would lay in the grass looking up just dreaming about anything and everything. Even as an adult I still dream...whether it's gazing up at the stars or looking out at the ocean...

This past weekend Kevin and I went to the annual Cedars Sinai Heart & Lung Transplant holiday party. "A Celebration of Life." There must've been at least 250 + people there... heart & lung transplant recipients, their family members, nurses, doctors, their family members. It was so wonderful to see the nurses & doctors in regular people clothes. No green or blue scrubs. No white coats.
Berni (NP), Rho (VAD team), Kev,
 & Mel (VAD team)

The evening started and we were at a table with other heart transplant recipients. One was transplanted the day after Kevin. They were both newbies. The other three heart recipients at our table were five years, nine years, and ten years post transplant. It's amazing. An instant bond with transplant recipients just like those with a VAD.

Me, Charito (VAD team), Kev
Dr. Kobashigawa was at the podium giving thanks to all the teams of doctors & nurses in the room. Talking about advance technology, the total artificial heart, the VAD program, how Cedars has done 75+ heart transplants this year alone (surpassing last year), stem cell research, and in between all of this he would introduce people. One of the men he introduced came up to the stage and had a flute in his hand. Bonus in my book because who doesn't love live musicians?  He was a double lung transplant recipient, two years post. His opening song on the flute was "Somewhere over the rainbow." Instantly the song had new meaning for me.  It was nothing short of amazing.

Another man that was called to the stage was Dr. Czer. We knew him from our LVAD days. We still see him post transplant on the days he's in clinic. He asked for a moment of silence for all of our donor families. This brought tears to several people's eyes. So many people in such a difficult time... made the generous decision to donate life to each & every one of those heart & lung transplant recipients in that room. Quite a powerful moment indeed.

Dr. Esmailian & Kevin
Dr. Esmailian was also called up to the stage. He began to thank his entire team of doctors, nurses, the OR staff, perfusionists, and he also thanked his wife & kids. I'm sure he must get woken up a lot in the middle of the night and his wife gets woken up too. Behind every good doctor is their spouse or partner, agreed? Now, where do I begin with him? He has given me both good & bad news throughout this past year. Every turning point in this journey, Dr. Esmailian was there. He was also one of the many doctors at Cedars Sinai that never gave up hope on Kevin. Not once. He saved Kevin's life on more than one occasion. What are the odds? Esmailian to one. (thanks for the catch phrase Reid) Before we left that night Kevin & I got the chance to have a conversation with Dr. Esmailian and his wife. It really was nice to see him smiling at us. I thanked his wife for sparing her husband last year during Kevin's critical condition those first two weeks. I was at the hospital all hours of the day and night...Dr. Esmailian was always there. He is an absolutely wonderful doctor/surgeon who clearly cares about his patients and the families attached to them. I am forever grateful to him for keeping Kevin alive and getting us to the point of bridge to transplant.
Me, Kev, & Dr. Cheng (aka rock star)

At the end of the evening, we got to mingle and say hello to other doctors and nurses. One pictured to the right is with Dr. Cheng. In our house, he's a rock star. He's the doctor that found Kevin's pheochromocytoma tumor. The cause of Kevin's heart failure. By finding the tumor when he did, he literally saved Kevin from another heart transplant. Had it gone undetected then we most likely would've been back. So you can see why we refer to him as a rock star.


Dr. Moriguchi & Kev
I saved the best doctor/patient picture for last. It's one of Kevin & Dr. Moriguchi. This doctor, like Dr. Esmailian, was also there all the time never giving up hope. He too gave me both good & bad news throughout this journey. We still get to see him post transplant for routine biopsies when he's in clinic. I am forever grateful to him as well...one of the few doctors that saw us from day one until present.

You know, a year ago we were living with an LVAD. Today, thanks to modern medicine, the 45+ people at Cedars Sinai Medical Center that saved Kevin's life,  and our donor family....well, my little family of four gets to "wake up where the clouds are far behind us" and "where troubles melt like lemon drops" because the dream that we dared to dream of Kevin getting a second chance at life....... it really did come true.

My little family of four.