A Bump Up to 40.8136

Evening Waterfall at Hakone Garden

Day 44, awaiting the call for Anna's double lung transplant.

We were right. The seasons are changing. In the 60's today, grey skies and a little rain, strange year. September is a different month with a new energy. I always thought of September as the beginning of the year. Of course this was because of school but it has carried over. Yes, September is a great month for new beginnings and transplants.

There was a lung transplant last night at Stanford. It is a relief. This is only the 5th one since at least the beginning of June. We saw Dr. Weill today in CF clinic and he admitted he has never seen anything like this. There have been so few organs available this summer. Even so, the list of people needing organs keeps growing. He feels this is an aberration and there will be a cluster soon.

Most importantly, Anna will not be going into the hospital at this time! Yayyyyy! She woke up this morning feeling a lot better. We knew it would be up to the pulmonary function God to determine her destiny. If her numbers were down significantly then indeed she would go in. If they were stable then no reason to go. Amazing, it has been about 3 1/2 months since she last left the hospital and she still is holding her own and very stable. Anna is so stable that she gained 1% in her lung function. Now that is 1 measley % but it is something. When you are so used to a downward slide any thing a little different is very acceptable. All of our hard work is paying off. We are successfully keeping those lung buggers under control with rest, good food, lots of treatments, a hefty dose of laughter, and the employment of a slave for Anna, in other words, me. I am going to give myself some credit here. I know that Anna can not do all that needs to be done to make life happen on her own. I am so lucky to be able to help her and that we get along so well and have such a great time together. It is all worth it.

Another thing happened in clinic. Dr. Weill said they had reviewed the results of her O2 testing and felt that they wanted to report them differently. She needs 6 liters of O2 when she is walking but her listing says that she needs 3 at rest. They decided to correct that with reporting her O2 needs at 6 liters. This changes her number for consideration on the list from around 37 to 40.8136. This is higher than before and puts her up there with severity of disease making more of a pressing need for the lungs. This took a bit for Anna to process. It means that with the most common blood type, O, and a higher number there is more possibility of the call coming much sooner. September may be a great month for transplant as I already said.

So, no hospital for now and hopefully not until "the call", the call is very likely to come soon (whatever soon means), and we have to be ready. Are we ready? We think so, but the Tshirts come next Tuesday. We will see if the universe allows the Tshirts to be distributed first. That only seems to make sense. The Anna Banana Bunch must be ready too.