Miracle On Order.......Miracle Received

(edited, January 14, 2011) Reflections of a CF Mom... I am the mother of a 29 year old daughter with a double lung transplant. Anna's old lungs gave out due to cystic fibrosis. On November 22, 2010 Anna received the miraculous gift of new lungs. We are adjusting and recovering from the end of life battle with CF and the intense transplant surgery. I am watching Anna heal and begin a new life with her strong and healthy new lungs. NEW LUNGS, NEW BREATH, NEW LIFE

Monday, October 18, 2010

Another Day on the List

His Holiness The 14th Dalai Lama Blessing Children
Ronald McDonald House, Stanford
10-13-10

Day 84.....

I got a sneak peek with one photo released to me of our incredible day last week. Now I hear that the rest of the photos will not be released until Nov. 1. I know not why but we will wait. Until then here is a little window into our incredible fortune last Wednesday when we got to witness and be a part of this wonderful event.

With a week like we had we are not allowed to say we are bored for another 20 years or so. To be fair, life just has not been boring on the transplant list. We marvel at how our life events have unfolded. In a few days we went from meeting one of the most famous and sought after teachers in the world to, for the first time, seeing ourselves in a movie that will be on the silver screen in a theater near you some time next year. A little too much excitement for a sick young woman having a hard time breathing and her momma sitting on the edge of life, waiting for a lung transplant.

And now, because of all of this we know that we want to put any available energy that we may have toward promoting and supporting the Power of Two film. That is the project that we must adopt. If there is any way we can help with the fund raising and raising awareness about organ donation we want to participate in that. It is the cause of the moment. It is vital to our lives and we know to many others and in fact, could be to anyone anywhere around the world. It is a universal cause filled with the magic of medical miracles, the ending of suffering and the need for compassion and comfort.

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What does it mean to have end stage CF and then to receive a successful double lung transplant? What is the difference in life style and quality of life?

With end stage CF Anna • is tied to oxygen 24 hours per day • doing at least three vigorous hand percussion treatments per day and many aerosols spending about 5 1/2 hours per day on respiratory therapy and dependent on a family member or friend to deliver the necessary care • coughs that rack her whole being and cause her to loose her breath • is also dependent on family assistance with daily chores such as groceries, cooking and housekeeping • has lags of energy and little general get up and go • manages all medications including ordering and scheduling O2 deliveries • cares for CF Related Diabetes and her high calorie needs as best as possible • must be regimented and scheduled in eating due to the percussion treatments as food must be digested prior to therapy, no food when she gets up, must wait until after morning treatment, eats lunch if there is time in the afternoon, and dinner at 6PM so that evening treatment, nebulizer sterilizing, etc. is done in enough time to get to bed before midnight, late night snack is allowed • go to appointments, see a friend, do something fun, go for a walk usually only between 12 and 4 in the afternoon and some down time available from 7PM to 9PM • this all changes if her lungs are exacerbated and she needs to go into the hospital for two weeks with round the clock IV schedules and 4 treatments per day.

After A Successful Double Lung Transplant Anna • will be able to breathe with normal lung function and no need for O2 or percussion therapy • will need to take immuno suppressant drugs religiously forever • will need to be vigilant about germs • will have to deal with adjusting to the new medications • will need to visit the hospital if she is ill for viral agents and antibiotics as needed • will still deal with her CF Related Diabetes and CF intestinal issues • will no longer be dependent upon family for care • will be able to begin a new life with energy • will be able to go and travel where ever she chooses • will feel more normal than she ever has in her entire life............. can I say more?

Guarantees: There are none but statistics show that there is nearly a one hundred percent chance that lungs will be available for Anna in time for her. Success depends on an excellent medical transplant team, Anna's vigilance in self care, the acceptance of the new organ by Anna's immune system, and the continuation of Anna's story.