A Day At The Spa?

We went to a clinic visit at Stanford yesterday, haven't been there in a long time, just kidding..... It is such a familiar place in our lives. I think I will mention in defense of the hospital that Stanford has its drawbacks because it is such a large teaching institution filled with fallible humans making decisions all of the time, but it has also made a lot of improvements in the last few years. Not to sound like an advertisement or that it is a spa, the food is really good, it has become much more patient centered, it has gorgeous gardens, wonderful art to look at, great nurses, favorite respiratory therapists, and has great stats on lung transplant just to name a few things important to us.

As for the patient centered part, Anna and I had the opportunity in the last year to join a few other members of our CF community to help create a CF Adult Patient and Family Advisory Council with the urging and blessing of Dr. Weill, the Adult CF director and the director of the Lung Transplant Program. At the same time I was able to serve as a liaison to the larger Stanford University Hospital Patient Advisory Council and assist in its formation. This is the first time the hospital has had this type of group formed. It is a testament to how things have changed. The administration listens to the patients, and actually makes adjustments to make the hospital and clinic experience more supportive and healing for the patients. It is quite remarkable. Unfortunately Anna and I have had to resign from the CF group because of our new task at hand and I have taken a leave from the larger council. I hope to return to it in 6 months. It has been a very rewarding experience to serve on that board.

But yesterday, we visited the CF clinic. Anna is stable. Good news. Her PFT (pulmonary function test) revealed a FEV1 of 28%. In past visits, this dreaded number would have brought tears, denial, and fear. Now that she is on the list and her listing number is determined by such statistics we applaud it. Now it is, "Yes! a 28%! I am still in that window!" It is a different attitude to say the least. In fact, there is even openness to if it slipped just a little because maybe that will up the score a bit. But, we don't really want that, staying stable at this level is just fine and not too scary. This is just what it is like on this side of the fence. We want to get on with the show.

Anna wanted to know what her transplant profile looked like. In asking her doctor she learned that she has so much in her favor and she is in the "sweet spot". How sweet it is, that is if she can stay this way until the lungs appear. She is so proud that there has been no serious down slide and that she is not headed for the hospital for a tune-up at this time. She has made a goal or a wish to not enter the hospital until it is time to get the new lungs. I hope she makes it. She is so done with CF care.........

Since we know that hospital so well we realized that the "massage clinic" should be up and running in the afternoon on the third floor. Chair massages are available for out patients, staff and other hospital visitors for $15 for 15 minutes. It is a special and needed treat when dealing with the tough stuff that goes on in that place. Anna's favorite masseuse was there. So, another advertisement for the hospital and how it has become so hospitable.

I also did a little Flip Camera filming of Anna in what may be the "last" CF Clinic visit of her life. Another appointment was made in 6 weeks, but we will see where her CF lungs will be at that time, in the lab or in her chest........... So, this was a monumental visit. I was filming because we have been invited to tell our story at this crucial moment on film to be included in the documentary film, the Power of Two. This is an honor for us. The film is centered around our dear friends Ana and Isa and the results of their miraculous lung transplants and their advocacy for organ donation and transplant awareness in the US and internationally.

It is different to share naturally on film. We have to get used to the camera eye. We will see if there is anything useful to add to the film. I will share more about this in future posts. But for now, all is good, and we wait.