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, November 28, 2010

It's A Wrap On Day Six

Day 6 post transplant..........

What a day this was. It was all about being present for Anna and helping her to connect to what was real. A strange trip to be sure but one she will get through soon.

Linda was with us for the afternoon and that was so great for Anna. It helped to ground her. Meanwhile through all the craziness and confusion she knew a "hot" man when she saw one. Anna eagerly sought to fix up Linda with a very cute nurse. It was a bit embarrassing for him but also quite funny as Anna can usually be.

The highlight of the day was that she had the urge to pee and she did two times! We were so encouraged. That made our day. We will see in the morning if that did anything in the eyes of the docs. She is scheduled for dialysis tomorrow so we will see. Any way, sure feels we are headed in the right direction. She also went for three walks around the unit and ate more solids. So great! It is definitely like a rebirth with all the vulnerability and promise that it would be.

1 comment:

UnknownNovember 29, 2010 at 2:59 PM
Anna,

I am sitting right there on your shoulder--can you feel me?
I check the two blogs constantly. Steve and I are cheering you on for every step forward.
You go girl.
Love, Gail
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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.

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Sunday, November 28, 2010

It's A Wrap On Day Six

1 comment: