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

Sunday, January 30, 2011

May All Continue To Go Well

The cold weather has returned. So glad we went to the beach when we did. Week 10 is about to begin. The tiredness is not as intense. I started some acupuncture a week ago and have now had 4 treatments. There is something about this Chinese medicine. I know that there are studies that show it not effective but there are others that show it to help with pain. I guess I am going for the pain. It is the pain of tiredness, soreness in the legs, and general pain of life. Wanting to get through this final period with a sense of rejuvenation, ready for an energetic Spring and year to come. I have sought out acupuncture at certain periods of my life for about 30 years now. It seems to work for me. What I do know is that that hour on the table with needles inserted, a room darkened, gentle music playing and a kind soul caring for me does the trick. I always leave with a sense of deep, deep rest. Just what I need.

This week will include a clinic visit, rehab and the continued process just begun of cleaning out Anna's cupboards. She is starting to reclaim her home and its contents. Even after going for "an hour" walk she can recover and keep at it. The young woman is starting to act like a "normie" like you and me. We take our ability to have our day and all the things that we do definitely for granted. To someone with serious chronic illness the normal things can not get done like they do for us. But now, Anna is starting to getting them done. Wonderful.

At clinic we will talk about our transition to normal. I will have to give 30 days notice to leave my apartment and I am hoping that I can give notice this week! That means that hopefully in this month Anna will begin to drive again after a year of not being able to while taking over or rather, taking back her life with me shrinking back into the shadows. I will always be there when needed of course, of course but it is time for new life and more time with our honeys. Less time as a tied at the hip mother daughter team. It is time. It is time. I am only thinking positive for Anna's continued healing and recovery to move forward. May all continue to go well..............

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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.