A New Week.......

We had a treat for the 4th! Casey drove Anna to our house to enjoy the block party with our lovely new neighbors. He went on to see his family in Danville and missed out on the fireworks we could see from our new back yard. So, is this what it looks like when a miracle occurs? Does the sky light up with color so bright? Or is it more personal and quiet with the heart gently opening and love pouring forth?

Any way, to continue the saga, what is happening this week? Yes, more fun, 24 hour pee collection, accompanying blood work and heaven forbid, the dreaded DMV. It would figure that now Anna has to go to renew her license. It is just another one of those things that we are scratching off of the list. Casey and I are her usual drivers at this time and after the transplant she is not allowed to drive for 3 months but after that, watch out California, there will be no stopping my daughter!

This is also a week of appointments for me. Yesterday I took my nap in the MRI. Despite the clanging and banging of the magnets I drifted off to the sweet sound of Nora Jones. I got a pic of my knee. The bursted cyst appears to be bursitis. What a drag. I see the orthopedist next week. Also on my agenda is the dentist and dermatologist. I am checking those must dos off.

But I want you to know that Anna is very stable right now and in fact is feeling better each week as she acclimates to her new normal. She attributes finding her new strength and sense of well being to a couple of things, one very important element was being diagnosed with sleep apnea in January. It took a while but finally she was fitted with a bipap machine and it has made such a difference for her. She was so exhausted from the lack of restful sleep. Her brain could not think clearly and she had absolutely no zip. Well, the zip is still lacking due to O2 needs and crappy lungs but she feels so much better being able to sleep deeply without the snoring and constant waking.

Another reason is Cayston, the new inhaled antibiotic designed specifically for CF lungs as well as diluting the Colistin so that it does not make her airways so tight. This attack seems to be working putting the beasties and bugs at bay so that she can have a break between exacerbations and hospitalizations.

Getting Cayston was a hard fought battle for CFers. The FDA denied the drug during the past administration for what appeared to be internal political reasons and gains, not because there was anything wrong with the drug. Finally, at the end of last year there was another review in Washington DC. Gilead presented their case before the FDA and one of their representatives, Beth, a CFer attorney and friend used Anna's story as a test case and example of why Cayston is so needed by the CF patient community. We were told that the story Beth portrayed was very compelling and we were thrilled that it was finally approved. And indeed it is an important new drug in the arsenal for CF patients.

Another element in Anna being stable is the help she is receiving. I can see that she probably has needed more help for a long time now. She has so diligently worked to have a "normal" life even though she has been on disability now for nearly three years. There is a reason she received disability, SDI. Life has been tough, but she organized her life the best she could to make it work. She kept her house and life in order by grocery shopping, cooking good and delicious food, going to appointments and appointments and appointments at Stanford Medical Center, seeing friends and family when she could and enjoying and maintaining her relationship with Casey. Now that I and all of us are helping with not only the three treatments per day but also the other things that zap her energy she has been able to restore and gain a little ground to feel some strength. It makes us all feel so good that we can help her so much. She only asked for help when she really needed it and she so needs it now.

So, on we go with this week and getting closer to the day she is officially listed.............