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, June 17, 2010

Miracle On Order

I went on a special trip in October, 2009 with dear friends and a documentary film crew to Japan. The purpose of the trip was to reach out to the Japanese people about organ donation and cystic fibrosis. I dedicated this trip to all those who suffer with CF, those courageous and fortunate enough to receive lung transplants and the families who so compassionately allow their loved ones' organs to provide life for others. It was a remarkable and very touching adventure. One day I visited the Asakusa Kannon Temple in Tokyo with my friend Ana Stenzle. While there I was so moved by the history and the sense of so many people coming from around the world to say prayers and ask for compassion. I placed incense and made prayers for my daughter that she would one day experience the miracle of transplant saving her life and giving her a new lease on life. After our prayers we threw sticks for our fortune, a tradition at the Temple. The following is the fortune that I received. My heart was full of hope that indeed this may come true for my darling daughter. So, I wish to begin this blog with the fortune offered to me at that special place at that special time when I placed the order for a miracle........

When spring comes, Katsura tree flowers are in full bloom, smelling so well.
Your fortune will open wide when your season comes. If you get the chance, open,
you will get fame and honor, climbing the way to the top of the sky.
Also you meet a great person with honor who helps you.
The moon in the dark sky will get bright again,
in the clear sky, you can meet the fortune soon.
"Your request will be granted. The patient gets well soon."

Asakusa Kannon Temple
Tokyo, Japan
October, 2009

1 comment:

SaraBooYaJune 17, 2010 at 11:24 PM
You never told me about this story! That is QUITE a fortune you got there!
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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.