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

Wednesday, September 15, 2010

They Arrived! The Tshirts That Is.....

Day 51, awaiting the call for Anna's double lung transplant.

Waiting again all day, but this time for the UPS truck to arrive. Two boxes at the door, one with short sleeves, one with long and both with small, medium and large. The Tshirts arrived!

Anxiety yesterday was about whether the shirts would be there on time and whether they were OK. Would the sizing be right and would they look good? They arrived on the guaranteed date and the shirts look great, at least we think so. So, really, there was no need for the anxiety, it was all made up gobble dee goop in the brain, as most anxiety is anyway.

We also play games with the timing of the transplant to make our waiting have sense and rhythm. So, the transplant can not come until the Tshirts get here. Or, now that the T shirts are here, the transplant can not come until they are all mailed out. We try to make up ways that we have some control on this process. So long as we do not think too seriously about this and know it is our own mind game we are OK. When we start believing that that is true then we know we are in trouble. But for now, making up rhyme and reason is a comfort.

It appears with the delivery of the shirts that we are playing a team sport. We have a team and we have a goal to win. Wear the shirt and you are on the team! (We also know that there are many others that are shirtless and are on the team. Do not worry, you are not forgotten.)

Does this seem corny? Yeah, a little, and perhaps to some, a lot. But, you know what? I do not care! I love it. The Tshirts are great and fun. If we can boost our spirits and keep ourselves going knowing that over 100 friends and family are willing to have one of our team shirts to keep us in their thoughts then yoooo hoooo, that is so great.

So, soon the shirts will be sent. Now, all of you that ordered one can do the waiting game and watch for the mailman every day until they arrive. We know that you are excited and can not wait.........

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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.