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

Wednesday, November 10, 2010

Waiting

Day 107 awaiting the call for Anna's double lung transplant......

What is waiting?

Wanting: In order to feel as though you are waiting you must be wanting something, either time to pass or something to come your way. There is definitely a wanting when you are waiting for transplant.

Accepting: When you are waiting for something that you have no control over you must be able to accept or you will go crazy.

Introspection: The process of waiting can be interesting. It is an opportunity to look at your mind and see how you react to not having any control over getting what you want.

Trial: Waiting and waiting and waiting for something that you want that is critical to being able to live your life eventually becomes a difficult trial.

Insecurity: Having no control and realizing that your mind's games grasping for ways to make it happen can make you feel very insecure. Hopefully the insecurity is let go of and faith in the process takes over.

Nurturing: The best way to pass the time of waiting is to nurture the positive.

Growing: As with all of life's experiences waiting is a fertile field for personal growth.

Yes, we are in waiting. And yes, we believe that Anna is the best prepared most ready to go pre-transplant recipient you will ever find. Every box is checked, all immunizations are done, infection under control, belly healthy, weight stable, attitude fantastic, support system intact, bags packed, multi-faithed blessings received, average wait time passed, car gassed up..... hey universe what more can you want? Oh, I hear you, you want us to wait more. Guess we have more growing to do.

And even more important, our donor's destiny........... in it's own time......... may there be peace, love and acceptance. May the hurt ones be consoled, may the hearts be comforted .........may the grace of generosity help to heal the broken............ together we will be looking for rainbows in the sky..........

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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.