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

Sunday, November 7, 2010

The Fire Was Circled By Friends

A gentle rain is falling, kissing the trees and wetting the ground. It is a comforting sound with a rhythm and beat persistent with purpose. The earth is receiving a drink as it enters the autumn time. Golden leaves on the table, the fence railing, the steps and the walkway herald the season. I love this time of year.

We snuck away again. It is a bit scary to be a few more hours away but we took the chance to be in Murphys. My innerds are filling again with the life here. The afternoon was spent at The Barn painting with 10 other lovely ladies. In the evening we sat around a fire after devouring handmade pizzas cooked in an outside oven. More delicious than I imagined were these individualized flavors baked by a wood fire with a crispy and tasty crust. Pesto, goat chesse, seasoned chicken, kalamata olives, tomatoes, pears, apples, onions and more were the ingredients to build a masterpiece of tastiness. Yummmmmmmmm. Then the fire was circled by friends who howled at the sky, beat sticks like drums, and told stories that revealed tell tale characteristics of their souls. What could be a better time?

It is a short visit but at least we were able to touch in. This is where our tribe resides. We will resume the communing when our task is complete. Anna's lungs have first priority. Perhaps the universe heard our beats and songs into the night that called the spirits to be with us. Perhaps we stirred the pot with our energy of friendship and story telling to awaken the karma that awaits Anna. And, perhaps not. Again, we must let go to this flow, what ever direction it is to take.

It is November, enjoy this time, enjoy the gentle rain, tomorrow resume the sweet time of caring for my darling daughter, follow the path that has been given me. I am grateful for it all. I have so much. Such, great fortune, really it is...........

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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.