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

Thursday, October 7, 2010

One of Those Mornings and Addendum

Day 73..........

I am going out to look for feathers..............

Yesterday there were "signs"................. They made me laugh.

Yesterday I could not believe we are still where we are................

Today I woke up hungry for cereal............What about my goat yogurt?

Today I woke up knowing I need to walk.................

I am not going to lie. I am beginning to not like this wait even though my mind has given me many reasons to like it. Something is protesting deep in my innards..........I said I would tell the truth.

Last night I thought, "what if we are waiting until Christmas or even worse, until the Easter bunny comes?" Anna said we could have an egg hunt................ Yes, we will be living fully, chocolate and jelly beans will abound!

I am going out to look for feathers..............

Tell me when you find something funny..............

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Very early on my walk a flock of black feathers in the sky cawed to me.

I looked up at the top of the redwoods. At least 30 or more black winged ones with deep calling voices sang a morning song. Sun rising pink with lavender at my back. I found the feathers I was looking for. They were not placed on the ground for me to pick up with wonder. They were doing their magic in the sky causing me to be picked up with wonder. That helped. Another "sign" that made me laugh......

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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.