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, September 7, 2010

Ahhh, Salty Air

Here is a CBS news story about a new trend in CF. Everyone is going surfing! This idea must have come from the hypertonic saline therapy that CFers do. They aerosolize very salty saline into their lungs everyday to help get the mucus out. Being at the beach sounds like much more fun. If this was the trend when Anna was little you better bet we may have moved closer to the beach!

Click here and check out the video..........

News story about surfing and CF.

2 comments:

BreathinStevenSeptember 7, 2010 at 7:23 AM
Actually -- I'd heard that it was the other way around: the hypertonic saline therapy came from surfing... Hypertonic saline therapy didn't get really popular around here until after I'd received my beautiful, new lungs -- but a version I'd heard was that it gained ground in Austrailia... There were studies involving athletically active CF kids -- some inland who were running and participating in sports -- others were coastal and their athletics involved quite a bit of surfing -- and the surfers were markedly healthier than the other athletes...

I don't know if that truly is the case -- but I recall that story being bandied about as hypertonic saline became popular...

Hang in there, y'all... It won't be too long before you're thankful that hypertonic saline and other "discoveries" are helpful for someone else...

Love, Steve
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Robin ModlinSeptember 7, 2010 at 9:34 PM
Steve, thanks for the encouragement. I hope it won't be long. We are so ready for the change and NO TREATMENTS!
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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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Tuesday, September 7, 2010

Ahhh, Salty Air

2 comments: