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, January 11, 2011

The First PFT Post Transplant.....

Seven weeks post transplant on Monday and a clinic visit..........

"OK, here I am in the fated PFT room and chamber. This is what I have been dreading, the 'numbers'. The numbers have determined my fate forever. The numbers determined my eligibility to the T list. And now, this is the moment with my new lungs, the first base line number of a PFT."

"OK Anna. They can not hear my thoughts. They don't know that I am sitting here saying to myself, #@$!!&%$#@#@!!!!! But, I am. I am getting ready. I can't get away without doing this. Here I go."

"They say it will be OK. They say I should not worry. They say my numbers will go up over time. Oh what the ......... time to lighten up and do what I do."

"Breathe in and blow, blow, blow"

"Keep it coming, blow, blow, a little more......"

"OK, I did it, and I did not cough. I do not feel like holy crap after. I can breathe. Amazing."

"They say, no obstructions. They say it looks good. Can it be?"

"Hey PFT, maybe we can be friends, after all."

" Not bad, not bad at all."

Anna's first pft was an FEV1 of 66% and the small airways at 109%. Pre transplant it was FEV1 of 28% and small airways were at 9%. FEV1 is how much air you can expel in 1 second. This is a critical number in CF. Great place to start Anna. The lungs are working. They just need to expand more and be worked. We look forward to seeing progress in the PFT room this year rather than the dreaded drops as CF progressed. Wish these numbers could no longer be a determining factor but they will be. They will help to determine how she is doing and whether she has some rejection. It is just the way it is.

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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.