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

Monday, August 23, 2010

The Transplant World Of Amazing People

I want to say thank you to Steve who left a comment on my tee shirt blog post. He is a CFer lung recipient 10 years out from surgery. He has a very good story to tell and over flows with effervescent joy. Thanks for your kind comments.

If others are interested go to http://www.climbingforkari.org/ to learn more about Steve and his journey.

3 comments:

BreathinStevenAugust 24, 2010 at 5:48 AM
Hey You...

Thanks for the amazing compliment!!! And thanks for linking to my website -- it is in serious need of updating, but the majority of it remains the same anyhoo...

And "effervescent joy" is a good description, particularly now... And I notice a LOT of pictures of Anna with a big smile on her face -- and I know, like she knows, that too often this disease doesn't have a lot to smile about -- yet so many of us are like that! I think it's because we always seem to be surrounded by love. It makes the crap life hands you much more bearable...

You take care of her... I will be very tickled when I see your first post about watching her run -- it's really an awesome feeling... Both for us running, and for those watching...

Love, Steve
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Robin ModlinAugust 24, 2010 at 4:25 PM
Steve, thanks for the support. And it is true many CFers are filled with humor and joy. Anna is one of them. I can tell you are one too and always have been. So, now that we are friends how did you find my blog? Be sure you visit Anna's blog too. Take Care............
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BreathinStevenAugust 27, 2010 at 1:12 PM
Hi Robin!!!

I have google alerts set up for things like "cystic fibrosis" and "lung transplant"... You hit my radar after a "lung transplant" alert...

I often read through stories and blogs and when I see someone having a little trouble in their journey, or someone traveling down a path I've already been down -- sometimes I reach out...

It's not an easy road -- but I want my fellow CFers to know how good it can get... And I want CF moms to know how good it can get too... I lived 39 and 361/365th years with my lousy lungs. I've now lived over 10 years with lungs from the most beautiful girl who has ever lived... (Anna will have her own "most beautiful person who ever lived...")

In all of those 39 years, I never imagined breathing could be this easy - life could be this easy - I had no frame of reference to understand what it could be like, and I never knew a breath could feel like this...

You take care... Love, Steve
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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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Monday, August 23, 2010

The Transplant World Of Amazing People

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