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

Thursday, November 4, 2010

In The Hospital.............

Day 101................

Today, I mean yesterday was a different day than we expected. We were to go get our shots to cover for whooping cough, pertussis, because of the epidemic in the bay area. If you have not thought about this, it is a good idea to see if you need to be re-immunized. Our whole family will get them along with our flu shots. But, we never got there, instead now I am here, sitting next to Anna in her hospital room. Not much sleep for us tonight.

CF gut raised its ugly head today without warning. Anna had tremendous abdominal pain all afternoon. After driving to Stanford for an Xray and then driving back home we were told to return and enter through the ER to be admitted. When this type of blockage happens you have to be aggressive or these CFers can get into big tummy trouble. So, the amazing thing is that the dreaded ER turned out to be no problem. It must have been some kind of record. We left Anna's house at 8PM, got into a room in the ER and by 10PM Anna was admitted into a room on a floor in the hospital. We planned that we would be spending most of the night in the ER so to be able to go to a private room so quickly was fantastic. While we were in the ER they kept saying that we must have some friends in the hospital to make that happen so fast. It never happens like that. We will take it, a little magic in the ER is great. So tonight I have a cot, helping Anna through this tough blockage. Things are already getting better........... hopefully she is not be here too long.

Did you know that Oprah is on at 1AM? Now I do.......

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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.