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, December 16, 2010

Every Athlete Needs A Day Off

Day 24 post transplant.......

Today, Olympic Training took a day off. Last night Anna was back in her room after surgery by 9PM. It took a while for her pain to be managed in the recovery room. This procedure was difficult and painful. It was a success though. They cleaned out the space behind her left lung and with some peal and sloughing off of the plural wall the lung is attaching itself to the chest wall. The remaining chest tube will be watched and hopefully removed tomorrow.

Anna's creatinine level today is the same as yesterday. This means that her kidneys are taking care of things much better. It is still some what high and so is her BUN but they do see improvement so there will be no dialysis today as well. This is a very, very good sign. It feels as though we may be at a victory. But let's not celebrate yet. It is possible that she will be able to leave the hospital tomorrow afternoon. What a treat it would be if we were done with dialysis and we never had to visit our local dialysis center like we thought we would have to. One step at a time.

The amount of courage, fortitude, good attitude, and general soldiering through is so much more than Anna imagined it would take to get these beautiful new lungs. If she was told before hand I do not think this would have mattered, as this is truly a miracle that is saving her life and going to give her a life filled with new......... so much, but our expectations would have been more realistic. Today Anna has to re-coop from the surgery and pain overload. So, today Anna said it was a day off from Olympic Training and I said, "Every athlete takes a day off. It is an important part of the training."

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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.