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

Tuesday, December 14, 2010

Let It Snow, Let It Snow........

Time for another update. Yesterday was dialysis, Xray and etc.... the usual circus and then Anna slept after massage and I got out for a walk to the shopping center..........

Today, no dialysis, watching the drainage and still healing. Xmas music is on pandora radio with the nifty stereo system Doug set up for Anna....... oh night divine.... oh night, oh night, divine.....
lovely tunes we listen to once per year are filling our private room with sounds of good cheer. Nurses walk in with smiles on their faces and Anna and I are loving the break.

Anna thinks things are definitely getting better. She is eating a bacon, lettuce, mayo, hummus sandwich, good for CF and to help gain some weight. Maybe things are starting to turn around. We need to watch how much drainage there is on her left side. The right side is now clear. It was always the left side where Anna had most of her lung pain or where crackles were heard the most. Guess it was that lung that was the most infected and created the most adhesions to her chest wall. So, may the left chest wall heal and heal and heal to allow for these beautiful new lungs to settle into their new home.

What is hard for Anna is to know what is normal or what is to be expected in this stage at three weeks post. Isa has helped a lot with having been there. She has been so wonderful thinking of us all of the time and asking if we need food, and visiting and cheering Anna on. The nurses help too especially our new nurse with curly hair. She gets the curly hair thing and we use the same Deva Curl products.......... now we are onto a much lighter subject. Ah yes, things are better today and far more sane. Hope it continues and "let it snow, let it snow, let it snow"......... say it again Bing!

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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.