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, December 17, 2010

Olympic Training Resumed........

The Holiday Spirit At Stanford Hospital

Day 25 post transplant.........

What is the greatest gift? Friends who get it and come to see you and encourage you. Lisa and Patrick, Anna's CF transplant buddies from CF Retreat came to see her today. What a boost this type of visit is. They exchanged war stories and then Anna could see them in flesh and blood and realize that she too is on the other side. Things are just going to get better even though there will be more challenges. So amazing.

And Thanks to Nahara, Isa, Ana and Stephanie for coming by the day before!

Today was "peaceful". Anna had to be desensitized to an antibiotic and had to move to the floor above temporarily. We pleaded to keep our room as it has been the best room we have ever had. It is considered a VIP room when big wigs stay. We can see why. It has wood blinds, pergo wood floor, soft lighting, comfortable seating and it is so quiet. It has made this stay "two" so tolerable.
As the day went on Anna's energy returned and she felt better and better with far less pain.

After we got all settled back at our favorite room and all meds we on board we went for a walk to resume Anna's Olympic Training. Anna walked a brisk 5 laps. He nurse followed closely and measured her oxygen saturation while on the walk. Anna satted at 97, 98, 99 % while exercising! Tears in my eyes. Unbelievable. Before transplant during her "6 minute walk test" Anna walked with 6 liters of O2 and a saturation of 94%. This time, no O2, the giant transplant mask and lugging IVs and drains.............99%!!!!!!!!!!! She is on her way.............

1 comment:

VirginiaDecember 18, 2010 at 6:37 AM
Hi Anna, Robin, Doug and Sarah,

Way to go Anna and her supporters! Those new lungs are really amazing.

All the best to all of you.

Virginia
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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.