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, February 4, 2011

A Poem and More Reflections

ten weeks + post transplant.....

It is amazing
How it all changes
Each moment
Aware of the textures
Aware of the tastes
Arising
Falling
Opening
Closing
Here I am

I am feeling better now. Working through with my emotions. It has been a week of easy tears. That tends to be more unusual for me but when I have those times it is a relief. Letting some of it out helps so much. It makes me feel more vulnerable with very tender spots that I want to care for. Since I can be a tough one on the exterior most of the time I kind of covet these times of vulnerability. It is nice to feel a bit softer.

But, as I said, I am feeling better now. A letter of notice has been sitting on my table for a day or two waiting for me to act. I think today I feel ready to hand in the notice to vacate this apartment on March 12. That gives a bit of a window past our three month mark of February 22. That gives a little wiggle room for our transition to launch. I have the willies about this because when you go through this intense of an experience you can not believe it is truly lifting. I wonder if there will be another crisis just around the corner hiding from us. Could be, but I am going to vote for this is a go and Anna is just going to continue to improve. No more obstacles, just healing and restoring for us into a new Spring.

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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.