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, November 23, 2010

Our Favorite Thing, NEW LUNGS FOR ANNA!

Day 1 post transplant! Hoooorrraaayyyy!

Talk about exhausted............. Slept at the apartment last night. Doug could not sleep and had to be with Anna all night. So glad he was here so that I could let go into rest. He is now trying to catch up with some sleep. Sara and I are now in the NICU waiting room at our post. Saw Anna and she was trying very hard to communicate. She wanted to write a message to us. So frustrating for her and for us to watch her struggle to tell us something. We had to tell her to be patient. The nurses are fabulous and all is going OK. She has a fever that we are not going to worry about right now. She is oxygenating well and they are planning to take the tube out this afternoon. Then we can begin to communicate. Most important is she did it! It will be rough for the next few days but she will get through this with the incredible care she is receiving.

So what does this feel like? What does it really feel like through the numbing tiredness and layer of worry? It feels like someone on Oprah's Favorite Things Show! I know you may think this silly. And it is, but I saw that show on Friday and Casey taped it for Anna yesterday and we watched it to wind down last night. All I could imagine was......

Oprah on stage saying, "So, do you have CF? Do you cough and cough, do multiple treatments a day, are you tied to an O2 cannula? Well, here is one of my most favorite things!!!!!!! NEW LUNGS!!!!!!!!!!!!!!!!" and then of course the audience goes wild, I mean WILD!!!!!!!!!!!!!!

1 comment:

AnonymousNovember 23, 2010 at 11:17 AM
:) I watched this yesterday as well...I don't think it's silly at all! I am thinking of you Robin, if you need anything, I'm here!!
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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.