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, February 28, 2011

Blowing In the Wind

Week 14 post double lung transplant......

Well, this past week we went with the direction of the wind, so to speak. From art to science, and with country friends visiting and luncheoning in the city, we did many different things. The week ended with Anna passing another milestone of independence and good health. Anna had a dinner party for friends! A simple thing to do but for her it was a very difficult task in the past. Her energy level, time constraints with busyness due to treatments and regimens and cross infections concerns made it so difficult to simply have friends over for dinner. Saturday she had 4 women, all great supporters of her and connected to her CF life for a birthday celebration for dear Linda. Wonderful, life is getting even more normal.

Thanks to Sue and Peggy for visiting. Here is Peggy's coffee reflecting an image of the sweet hearts of these two special friends...........

After visiting the art museum with Peggy and Sue we met Sara at the CF Lab for more research of Anna's CF sweat.

And thank you to Dr. Wine, a long time friend of ours on this CF path. We started this journey together when our babies (only days a part in age) were diagnosed. It has been such a life time of experiences, changes, trials and miracles.

Only two more weeks with the apartment............ and I think this goes for the blog as well......
I will say more soon.

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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.