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 30, 2010

A Difficult Time

Day 8 post transplant....

We had a hard night last night but things are better now. More details later. Transplant is rough and tumble sometimes. Please keep sending good healing vibes to Anna. She is on a journey and it will lead to an amazing new life but this is hard now. She will have quite a story to tell. I will write more tomorrow. Hope all is well with all of her loyal and loving Banana Bunch. You mean so much to all of us.

3 comments:

BreathinStevenNovember 30, 2010 at 11:53 AM
It is rough and tumble sometimes -- and scary as all hell to be living through it -- and I have to imagine scary as all hell to watch someone you love going through it...

You always hear that we all have "bumps" in our road -- and then sometimes we wonder whether that "bridge out ahead" sign qualifies as a "bump"!!! She'll get through this -- she's an amazing and strong person -- we pull strength from the most unusual places when we're heading down this road...

Please let her know that there are a LOT of us out here sending our healing vibes...

Love, Steve
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JamieNovember 30, 2010 at 4:15 PM
Robin-- Sending SO much love and healing thoughts to Anna... and to you and your family. Anna is such an amazing, courageous and strong woman...she is in my thoughts and prayers (as is your family!) all of the time.
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UnknownNovember 30, 2010 at 9:08 PM
Have courage, dear Robin. Nothing I write feels like it's adequate. How could I ever offer you advice? Instead I offer you all love. Keep sending us the updates. I check over and over. Love you so much.
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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, November 30, 2010

A Difficult Time

3 comments: