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

Friday, August 6, 2010

One, Two Three.......... Knee Surgery

Before this next dose of vicodin fully kicks in and my head starts to swim I want to report that all went well today. I can not believe that I had surgery! If you had asked me just two days ago if I thought I would have knee surgery with a general anesthetic today I would have called you insane! Why in the #@?! would I complicate our lives and risk my care giving skills for Anna now, at this time? Crazy, Insane, Looney, Nuts! And now I must say that the greatest thing was that it was so quick, from that telling look on my doctor's face to his appearance in his cute blue net hat in the O.R. I just dove in, did it, no time to ruminate, no time to worry, no time to fret. The time is now. One, two, three, GO!

Sara picked me up at the apartment at 5:15 AM to arrive by 5:45 AM at the out patient surgical center. I did not give myself any time or space to doubt. This was getting done. I was trusting that this was the best time for this, the lungs could not possibly appear while I was under the knife and that I will have a little time to heal before they do arrive. Of course I may have a lot of time to heal. That is the great unknown. Life happens, they say, and in the Modlin household that seems to be definitely true.

I am now situated with crutches by my side, ice water flowing through a nifty blue tube system around my knee, the phone in arm's reach, and my bag packed. If lungs should arrive tonight, I am ready! But, I am sure glad that I have Doug to drive (and generally be my slave for a few days). These drugs are a bit disorienting, yes it is now kicking in. Time for shut eye..........

P.S. Thank you Sara and Wendy for taking such good care of me. And you too, Doug.

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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.