Let The Show Begin!

Anna with Marc Smolowitz

Finishing up post transplant........

Sunday we all met in San Francisco for the showing of the movie, The Power of Two for the cast and the crew. It was again at the Viz theater in Japantown on Geary. The film is finished and tells the story of twins with CF who meet the challenge with courage and creativity breaking through boundaries, living beyond expectations, and becoming international advocates for organ donation and transplant. Their struggles are told honestly and their triumphs are an inspiration. Interwoven in the story is Anna, their friend for 20 years. While their story is being told, this person who was a child when they first met her has also grown into an articulate woman fighting the same foe. Anna bravely shows her end stage CF and talks about what it is like to be on the transplant list. I am the tearful mother by her side.

It is a movie and a portrayal of our family within it that we can all be proud of. I hope that the film offers all of us an opportunity to be vocal advocates for organ donation. We know that everyone wants to see it but there is an official process that must happen first. How to market the movie is first on the agenda. We were promised that this year there will be a gala event in the bay area for family and friends and all interested to come and see the film. That will be very exciting. If you are interested you can stay in touch through Anna's blog, facebook, the Power of Two web site or (not really announced yet) my new blog. When there is a local date for it to be shown we will let you know.




Notice, Casey, Doug and I (behind the camera) were wearing masks. Anna shared her little stuffy nose with us so we were very careful at the movie. It was eye opening to have to wear a mask like she does. It is warm with your hot breath filling it but it is also a feeling of safety. We were not sick but we wanted to be very careful to not share any germs. There were a number of transplant patients at the showing.

One more comment about the film. It was striking to see Anna pre-transplant. In the film we revisited the sounds of coughing and the tightening of the stomach as you watched her fight for clearance. CF is such a hard, hard disease. Those that have it and fight it are remarkable.

Among our other CF friends out there are Steve and Akihiro who both also received lungs recently. We understand that Akihiro is doing well in Japan. We are so pleased. His father is portrayed in the film with photos and childhood video of Akihiro stressing the differences in CF care in the US and in Japan. He is the first CF double lung transplant recipient ever in Japan.

Steve is still on some IVs and working with his meds. He has had a rough time in his recovery since rehab and we think of him all of the time. We look forward when he gets better and this summer he and Anna can meet in the pool for a swimming fiend duel.

And, there is another friend of Anna's from CF Camp and Retreat, Katrina. She is in San Diego and has been on the list for over a year. Katrina is severely ill at this time. There is a call out for a living lobe donor for her because she can not wait any longer. It is a small number of lung transplants that come from a living donor but it does happen. Those that are a match can offer a lobe of a lung to someone on the list. In this case you usually need two living donors so that both lungs can be replaced with lobes. For Katrina, they see this as a last chance for her.

I know that Anna is struggling with how unfair this seems for Katrina. She has been watching her since she was listed long before Anna was. Patients wait much longer for lungs in other parts of the country and even in this state. Northern California has a very good record for organ donation. There are patients on the Stanford list who have been there over a year and are still waiting but the statistics are so hopeful in this area for them to finally receive their lungs. This just underscores the great good fortune for Anna that she was able to receive her gift after little over 3 months. We are so grateful.

And again, it was poetic justice that as we are wrapping up this phase of the transplant experience we got to see the final film. The sense of full circle is real. We are moving on.