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, August 23, 2010

Define Heaven

Day 27, awaiting the call for Anna's double lung transplant.

Yesterday Doug and I walked into a little bit of heaven, an orchard of peaches, plump, juicy and warm from the sun. Biting into as many as I wished, juice poured out with sweetness washing my chin with sticky yummyness. Yes, if there is a place that is heavenly it would include an orchard of peaches.

It is day 27 and tomorrow marks the 4 week mark since being on the list. Wendy has suggested that I say we are awaiting the call rather than waiting for the call. I think the difference is that waiting is more stagnant. Awaiting implies that there will be an anticipated event or result making it more dynamic. I am all for making this period more dynamic, rich and full of new moments of experience.

Being in the peach orchard yesterday gave me a new sense of moment and what a scenic heaven would look like. As I stood there, I knew what I wanted and needed to find pleasure and comfort in this life, in this moment. Warm juice filled fruit on the tree and the ability to share it with those that I love is truly heaven. Doug and I delighted in our country excursion to peach land together and I instantly thought about all of those others that would have loved that minute of tasty pleasure. I imagined my friends and family in ecstasy mmmming and ahhhhhing at the fruit delights. I had to call, "Anna, I am in heaven and I wish you were here." "Sorry, Mom, well, I'm not there." "Yes, but next year I am going to bring you here, you would love it so much!"

I am awaiting peach heaven with Anna and Sara and anyone who wants to join us breathing deeply and breathing in the warm fragrance of summer time in a California peach orchard.

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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.