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, December 5, 2010

Reporting From Home!

Day 13 post transplant.....

Two weeks ago tonight the call came shortly after 9PM. Doug and I were snuggled in watching a movie, sipping some sherry. Our lives changed. Anna talked about this last night with Dr. Dave. She commented on how she was about to do a treatment and Casey about to shower getting ready for the week when the fateful call rang. It happened so fast. Within 9 hours she was in surgery to receive her beautiful and perfect new lungs. Life will never be the same. The grief process to release the old lungs is now underway as Anna is starting to move from survival mode to integration.

Doug and I are happy to be home for a day. The skies are gray and pregnant with rain. This is one of my favorite times looking out a window with tea and xmas catalogues. We will have a fun time at Christmas this year. Now is my chance to do a little internet shopping. That is about all I will be able to do but I do think we will be in my home baking cookies and fixing a grand feast of celebration.

Linda was caring for Anna this morning so I could leave. Sara and Casey are in charge now. And what is so amazingly important,

Anna has Peeeeed twice in about 12 hours so far.......... monumental!!!!!!!!!!

On Friday eve I had a feeling our mojo had shifted and we were back on track. That serendipity of coincidence began to play with me. I went for a walk and in a most unusual way ran into a Dr. whom I worked for when Anna was born and diagnosed with CF. There was David. He heard how Anna was doing through a friend. I told him it was a gift to see him as I was so connected to him and his department at Stanford where I worked while pregnant with Anna. The life that resulted from Anna's birth was now ending and Anna is now beginning a new life. We embraced. It was a marker to me. We are now moving forward, the magic is starting to connect the dots again............ let's hope so. This very difficult stuff is so hard to take with out some of that magic of serendipity that was so much a part of Anna's transplant journey from the beginning.

We are now on track to leave the hospital on Wednesday............

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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.