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

Friday, October 8, 2010

The Bunchers

Jack Johnson's Band
Anna Banana Bunchers

Day 74.....

Anna has been posting photos of members of the Bunch community on her blog. It looks great on everyone. She has also heard a number of stories about how it is stimulating conversations. Here is one group that you might recognize, all be it that one member "forgot" his shirt. That member is our dear Adam, our cousin who we love............ Adam is the drummer for Jack Johnson. The whole crew donned the shirts for a photo shoot, except Adam. I think he looks a little guilty in the photo, don't you?.......... but that is Adam!

For the first time yesterday Anna forgot her phone when we went out. The crazy excitement of it! That means that she will get the call when no one can reach her...... we went back to get it. Then the interesting magic of her shirt. Anna decided to wear her Banana Bunch shirt yesterday. While we were shopping a lady said, "Can I ask you something? Are you a lung recipient?" Anna turned to her, "No, not yet." She then explained that she is on the list. The inquiring woman with beautiful long brown hair told us that she had been on the list once. She moved to California and then no longer needed new lungs. She has an extremely rare disease called Alpha Gal Disease. It is related to her inability to process animal products. I am not sure how coming to California changed her disease status but she was another one of those people who needed to talk and the shirt offered her the opportunity.

The lady in the store told us that lung transplantation is her new cause and she was just involved in helping an east coast patient with a fund raising effort related to his transplant. She wanted Anna's blog address and said, "You will get your lungs. It will all turn out well." So nice to receive that reassurance even from someone out of the blue.

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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.