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

Saturday, December 18, 2010

For Me, A Day Off

A quickie about Anna. Her dear Emily came by today. She arrived as I was heading out. I got in the car with my sweet Roxy dog. We drove home to Livermore stopping at our favorite Mexican Grill for shrimp tacos for lunch, then, a nap and deep hot soaking bath......... Ahhhhhhhh!

Today Anna chose to have some of her "puff" taken off with the dialysis machine. She did not need a regular dialysis but has some retention problems still because of the kidneys, the pred and the blood clots found in her right shoulder and arm. They are not worried about these clots. They were found unexpectedly with ultra sound. Anna has a pic line in her right arm, a dialysis catheter in her right chest and had central lines in her right neck. All of this is an environment that can create blood clots. She is on a heparin drip to help get it resolved. She will take coumadin for a short time after leaving the hospital. Besides that she is on IV antibiotics now for two weeks (we will continue them at home when she leaves). She is still draining from her chest tubes so can not take them out just yet. Anna also is still enjoying the relief she gets from vicodan for the pain from the second surgery but over all she is getting better and stronger every day.

Each day we assess what is happening and things are looking up for a release early next week. So, so hope so. We started planning Xmas and what we want to eat..............

My rest at home today was so needed. I will be back to the hospital in the morning to relieve Doug who is being the wonderful dad and husband today and tonight.

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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.