Dear Friends, Dominic has received the lungs! He came out of surgery early on June 24th. It is now just 2 days after the surgery and Dominic is exceeding expectations and going strong. His determination and fighting spirit is a thing of awe. Dominic and myself are so thankful to his donor and the amazing team of doctors, and grateful for all of your support. We are just in the infancy of this great journey, and are finding our way day by day. We wanted to extend our warmest and deepest thanks to all of you who have contributed to this campaign with both donations and uplifting words. It all means so much to us and is making a fundamental impact on our experience. Lovingly, Debra
Apr 15, 2015
First off, I'd like to thank everyone who has already donated to our transplant fund, your generosity has meant so much for me and Debra. Knowing that we have the love and heartfelt support surrounding us really makes those deeply trying times a little easier to get through.
I wanted to take the time to thank everyone as well as update my status. And let me just say, It's Been Awhile! I have officially been listed for a double lung transplant for 3 full years at USC (in Los Angeles) and 1 full year at Stanford (in San Francisco Bay Area), exceeding both suggested and average wait times at each center- by a long shot. While this does have a few positive implications- living with my original lungs as long as possible is most medically optimal, it has brought about a whole host of other challenging issues. The most significant of those problems is random bouts with acute lung failure, which I experienced very rapidly and very scarily in January of 2014 ending up intubated on a ventilator for 4.5 days.
These are the scenarios I now face for having such low lung function and no reserve to handle any acute problems. In addition to that, many of you know from seeing photos of me on social media or talking to me, I am on fulltime oxygen and Bipap for sleeping to help support my lungs and clear out excess CO2. But I have been hitting the gym as much as I can, and gained back some of the weight I had lost and am trying to rebuild my body to be strong and durable once again. On the winded days, I just crank up the oxygen. I want to be a beast when I get that call so I can fly through the surgery. I jokingly tell the transplant teams at USC and Stanford that I will be the first person after the transplant to walk OUT of the operating room.
I just wanted to also share this message- I wrote this two weeks ago, while in the hospital during a disappointing course of IVs (became resistant to yet another antibiotic and I became severely allergic to my most sensitive antibiotic, leaving me with only 2 choices left to use when I'm having an active lung infection.) It is pretty much exactly how I (and Deb) have been feeling about this seemingly never-ending wait...
************ In and around hospitalizations and home IVs is usually when I do performances, the opportunity to be vulnerable on my terms, rather than at the mercy of my body breaking down. Maybe partly to satiate the abrupt end to being continuously monitored and observed by the doctors and nurses.
This time though, I was in for 10 days already and leaving now to do another 6 days of home IVs, I find myself completely burnt out and not wanting to produce. That creative energy I usually get from those rundown places of a hobbled body are just not there this time. I think the years are starting to piling up on me, the waiting, the living in limbo waiting for a transplant and the inability to fully commit to a full steam ahead way of living, is absolutely catastrophically draining. The well is starting to run low.
The stops and starts, this Sisyphean task that became my life over the last 3.5 years, is zapping me of my positivity and my talents. It has made my life and Deb's life some sort of sadistic purgatory, a treadmill in quicksand, something that is grating on both of us as we tirelessly work to stay healthy, and make work- to live the life, even with the compromises, that we want for ourselves.
When the art starts to give out on me, man that's a lot. I will sit with this and hopefully use this- but when those lungs do finally come, and I recover, Deb and I will drop everything and you'll find us in a remote part of the world waste deep in umbrella drinks getting a month long massage by a Portuguese masseuse named Fausto.
I have learned a lot of lessons during this journey, the biggest one being: its crazy expensive to be terminally sick, but the love and support from people around you is priceless.