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, November 22, 2010

It Is Happening, New Lungs Have Arrived!

Day 119 and Anna is receiving new lungs............

Anna was wheeled into the OR at 4:30AM. We got to the hospital at 11:30PM. Anna had her entourage, Ana, Isa, Mom, Dad, Aunt Sue, Sara, Lou, Casey and Linda. The evening went by very fast with story telling, and oh my gosh I can not believe it is really here. Anna entertained us with her humor and strength.

What we know is the donor is a youngish woman with healthy lungs that were a perfect match. From the beginning it was felt that this was a go and good for Anna. Someone's family allowed this donor to offer a new life to Anna and we are sure others as well. Let us take a breath and be grateful to them and know that their Thanksgiving will be different from ours. May their grief be comforted with love and family.

The surgery will take about 6-8 hours. We are camped in the NICU waiting room. I am so glad that my sister is here with us. The signs...........the full moon, a beautiful number 11-22 and my sister arriving today from Oregon with her family for Thanksgiving. I always wanted her to be here when this happened. It is so amazing that she is here. In fact it was such a warm and upbeat evening with everyone who was with us. We are so blessed by these loving people.

I will post as I find things out. Sara is taking over Anna's blog for the next few days...........

3 comments:

TaraNovember 22, 2010 at 8:06 AM
How is the waiting going? Have you been able to get a wink of sleep? I will be checking this blog and Anna's blog for updates all day long. Much love and strength to you and the whole family. Thanksgiving has come early. Wow!
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UnknownNovember 22, 2010 at 11:18 AM
Go Anna, Go! It was so special to be with you guys last night (aka this morning!) Anna was so READY--it was unbelievable. This is the home stretch of waiting for all the Modlins and Casey. Wish I was still waiting there with you but I'm there in spirit. I'm going to try to come tonight and let me know if you need me to bring anything!
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UnknownNovember 22, 2010 at 12:11 PM
Mom told me the news this morning. So glad that Sue is with you. I'm sending you all my love.
Thankful.
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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.