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, November 12, 2010

DRY RUN...................

We are at Stanford, Anna is dressed in her pretty gown........monitors on......... the lungs are not good enough! False Alarm.............. time to go home.......... we are grateful they do not take anything but great lungs for her............. we will wait again.......... thanks for all the good wishes.

Our life is pure............ drama..............

2 comments:

BreathinStevenNovember 12, 2010 at 10:34 AM
Well, THAT will get your heart pumpin', won't it?!?!

I'm sorry you two... I do understand what you feel like right now - I had four "false alarms" before I got my beautiful lungs... It may take a day or so to come down from this buzz...

It's disheartening - but sometimes we're sitting for days and days and something inside is wondering, "Am I really on the list?", "Is the paperwork all proper, or did I get somehow lost in a shuffle?"... Then this happens and you KNOW you're in line!!!

Please know that they're getting better at evaluating and procuring lungs than they were even 5-10 years ago. "False alarms" are still common, but I believe less common than they were in years past as they are developing more skills at preserving organs, especially lungs, in donatino situations...

It's still an amazing thing... Though, without a doubt, I was nervous and excited with every call - but my mind was often fixated on another family, someone I was thinking about and praying for, and hoping they were somehow comforted with their decision - and at the same time, in complete awe that in their darkest moment, they had made a decision to try to save my life. It reminded me that people are truly good.

Four times their gift did not work out for me, like this one did not work out for Anna - yet it was still offered and that family needs our thoughts and love...

With all my heart - I hope the next one is magical for Anna! (And for you...)

You two take care. Have an extra special dinner tonight, especially since Anna was already cut off food for 10-12 hours! Celebrate your next call...

Love, Steve
ReplyDelete
Replies
Robin ModlinNovember 13, 2010 at 6:36 AM
Steve, you nailed it...... a couple of days ago Anna asked if they still were thinking of her. You wonder some times......... such an experience and you help us know that it will come, the miracle will arrive.
ReplyDelete
Replies

Add comment

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.

Pages

Friday, November 12, 2010

DRY RUN...................

2 comments: