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, March 9, 2011

Visited With Grammy

Today we redeemed a gift to have a pedicure........... fun and relaxing. Thank you Linda, it was great. After our feet were pampered, cleaned and beautified we went out for lunch. Food again, my increasing waistline is glad all of this fun is soon coming to an end. Our restaurant search lead us to Redwood City and a funky little restaurant that in her last years was a favorite of my mother's. As we walked into this late 50's era place we immediately felt Grammy. Mom was here. I took her here to lunch a few times. The lunch was good, not fabulous, but it felt that we were with Grammy. This was a surprise for me. I did not realize that today was a day to include Mom in our day. It was perfect though.

After lunch we decided that Mom would have wanted us to have desert so we traveled up the hill to the Woodside Bakery. Mom and Dad lived in Woodside for 30 years. It feels like their home still. They loved the bakery. We bought a small box of cookies "on Grammy" and coffees. She would have been so happy that we had these cookies. To spend a little more time with Mom, we went to the Woodside Library where a bench was placed by our family in her honor in the beautiful native plant garden. It was indeed time to talk with Mom. It was time to say, "Mom, look at Anna. Can you believe it? She has new lungs!" Mom would have been so thrilled. As Anna said, she would not have done well during the intensity of the hospital recovery and all but only if she could see her now!

We sat on Mom's bench eating cookies and sipping our coffee. We felt her and Dad all around us. They were wonderful people who loved gardens, nature and Woodside. Again, it was a full circle moment of completion. Where I had sat on that bench my self since transplant, Anna had not. It made us both feel good to show Grammy the results of the past difficult year. When we sat there Anna said, "I have a feeling I am going to have these lungs for a very long time. They feel like they are at home inside me. They are happy here." Love that thought!

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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.