Day number 18, waiting for Anna's call for a double lung transplant...Ana and Isa have been our friends for 20 years now. We met them when they moved to Stanford University as students. They were 19 years old. I saw them as mentors to Anna. Here were two young women who had made it through all of their struggles and years battling CF with numerous hospital visits and they made it to Stanford, quite an accomplishment.
During one summer break we invited them to live with us until the Fall semester resumed school and their housing arrangements. They both took up residence in our smallest bedroom, a postage stamp size room. They slept in the same bed to save room. Being identical twins and used to the close quarters ever since pre-birth days it made sense that they could do this successfully. It was a very fun summer for both Anna and Sara. Ana and Isa became a part of our family.
All of the CF visitors that lived at our home did so with some precautions. Cross infection between CFers is a concern, but a manageable one. We asked Ana and Isa, Sandra and Mette to submit their sputum culture results to Anna's doctor for review. If they had an organism growing in their lungs that was particularly virulent and dangerous we would not have invited them to stay. As it turned out each of them had their own variety of pseudomonas as did Anna. At that time it was generally understood that once you were colonized with a strain of this destructive bug and it had not been eradicated, then it was yours. We were not worried that the other CFers were in our home but we did have other guidelines. Everyone did treatments in their own bedrooms. Anna was not allowed in their bedroom and they each had their own bathroom. We were very lucky to have three bathrooms, so that made this element work very well. We were also diligent about hand washing and generally being hygienic. It worked for us.
Anna was colonized with pseudomonas at 4 years old, long before these invitations. At that time it was not believed that aggressive treatment at the beginning of colonization was wise. There is a different approach to this now. But, this living arrangement did not change the cultures of any of these CF patients. They kept their own bugs and did not acquire new ones as a result of opening our house and hearts to them. Pseudomonas and the other nasty bugs that CFers get are generally acquired through the environment. They live everywhere. At some point you just do the best you can to be careful while setting a limit to this fear. You have to decide to just live your life not being afraid of every "no-see-um" that could be around every corner. Otherwise, you go nuts!
Now Ana and Isa are 38 years old! Ana has had two double lung transplants and Isa has had one. They are very well and living a full and exciting life. They have written a book about their lives, The Power of Two and gone on book tours. This year they have been filmed for a documentary about their lives, organ donation, transplant and an international call to action. The filming is now coming to an end and the editing is being done to prepare for next season's film festivals. As it turns out, since we have had a very close friendship and have shared the same struggle with CF, Anna and I appear in the evolution of the story.
It is really remarkable that this film would be made about transplant at this time while Anna is waiting on the list. Marc Smolowitz, the director, invited us to share our experience at this time on camera, alone, together and with Ana and Isa. Yesterday we did the filming. As I said in a previous post, this is not comfortable territory. It is difficult and very vulnerable to sit in front of a camera. We did it and it did seem to be OK. Our participation seems to make sense in the grand scheme of it all. Anna is in such a poignant and teachable time which coincides with the goals and objectives of the film. http://www.thepoweroftwomovie.com/
Wherever the Power of Two goes, so does sushi!The one part missing for the film is Anna being wheeled down the hall into the O.R. smiling and waving to us and then hours later the surgeon emerging in his long white coat, name officially inscribed on his left pocket, telling us, "All is well, Anna will have a new life with new healthy lungs." So, let us put that in this order for a miracle too. It would be fitting wouldn't it?
Have you read Anna's blog too? http://annabananasvarietyshow.blogspot.com/
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