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

Friday, September 3, 2010

Drums

Day 39, awaiting the call for Anna's double lung transplant.

Listening for the winter sparrow brought me the sound of drums, Japanese and American Indian drums. At the last minute a call from Isa invited me to hear taiko and native American drumming in honor of the Smithsonian Institute's American Indian Museum in Washington DC presented by the Foundation for Hakoni Garden in Saratoga. What a combo!

The evening was perfect with a warm temperature and traditional Japanese surroundings. We were treated to the heart beat of the native drum and the lilting sounds of the native flute. Then we were awakened with the pounding and energized taiko drums that made our bodies move and shake to the rhythm. Such a deep penetrating sound into the bones, through the soles of the feet securing the connection to the ground and earth beneath.

Drumming is something I love. I have done a little of it. I never joined a drumming circle even though at one point I was part of a native American medicine circle. It was there that I had my own drum made. Recently drumming has been a therapeutic exercise of friendship with Peggy and Ron in Murphys. They have a fabulous kettle drum. Sometimes we beat and beat that drum sending its song into the valley. It feels so good. It opens you and energizes you. Such a powerful and ancient form of music connecting to that which is bigger.

Actually, Anna and I drum everyday on her back, front and sides. This rhythm is different, the rhythm is life giving, the rhythm is regular and the rhythm will end with transplant, truly what a relief that will be. Then, only the beat of the drum and not the sounds of hitting of my daughter's chest will fill my ears with that echoing rhythm. We are so ready for that day to come.

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

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.