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

Tuesday, August 10, 2010

Another Top Banana

After I finished my post this morning I was reminded that there are other members of the bunch that are pretty fantastic in how they "hang" with us. There is one in particular that must be mentioned as a true Top Banana.

She is very special to all of us. She is a "surrogate" daughter and a "sister" and one of the best friends you could ever have. When we need her, Linda comes and fills in to do treatments and other chores that need to be done. She has been our safety net. In fact, we just got a tingle ling on the phone with a text message that offered dinner on Thursday (sushi, maybe?). You need to know the appealing properties of our banana, Linda!

She is beautiful, fun, smart, loving, considerate, kind, crazy, and wonderful. Linda is a non CFer friend of Anna's who is such an important part of the CF community. Years ago her dad was a hero in our community when he invented a new CF drug, Pulmozyme at Genentec. He was invited to visit CF Summer Camp as a guest and brought his daughter along. She instantly became part of the pack. Linda came back year after year enjoying the fun, making deep and lasting friendships and not being afraid of connecting with a community that lost members frequently at young ages, ages similar to hers. She hung in there and gave and gave and still gives and gives. Linda always goes to Retreat and this year was part of the bunch that helped Anna be able to be there by giving treatments.

Linda we love you and want you to know you are truly part of Team, Anna Banana's Bunch and stand out as a top banana!

1 comment:

UnknownAugust 10, 2010 at 7:24 PM
Thanks for the shout out, Robin and the love! Anna is a wonderful friend to me so i feel lucky to be her friend and a part of the whole banana bunch! Love to you all and glad to hear from Anna that you are on the mend. It sounds like today instead of being bananas, you were a bunch of couch potatos! ;) Good! You
all needed it!
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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.