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

Sunday, November 28, 2010

She Ain't No Wimp

Day 6 post transplant......

Last night things became a little more difficult for Anna with her reactions to the drugs. She talked a lot pre transplant about how she would tolerate the mega high doses of pred. She knew it can make some very mentally unstable. It is hard for her to truly know what is and is not reality sometimes. She has to rely on us to help her calibrate. Her hallucinations include people being different colors, usually purple, and wondering what is going on around her. It is part of this very immense and intense surgery. Again, no one is too worried about it. It is just part of what happens. So, we go with the flow.

Sara spent the night here last night as we do not want her to be alone with her mental confusion. There was not a lot of sleeping happening. Her sister is a hero and is taking the day off today. We will take turns as it goes..............

This morning she ate a good breakfast, cream of wheat and yogurt. We went for a walk in the unit and I was able to wash her hair. Finally there are some quiet moments and she is sleeping soundly. A relief as it is so hard to find any peace for sleeping in a hospital. She will have dialysis again tomorrow as her kidneys are not out of the woods yet. Her lungs are beautiful. So, each day is a step forward into a new life. She will make it as she has what it takes. Anna Modlin ain't no wimp. I can tell you that much............

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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.