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, September 20, 2010

Walking In Step

Day 56, awaiting the call for Anna's double lung transplant.

Today was another visit to Stanford. Anna needed another pulmonary function test, blood gas value and 6 minute walk test. All is well. She is stable. This is good.

We do not know yet if there were any values that may affect her LAS (listing allocation score). We will be back to Stanford on Thursday for another pre transplant clinic visit. Her Dr. will go over the new scores and reveal any changes then.

Meanwhile, Anna is doing well and her heart and mind is in such a good place. Hope you read her last blog post. It was great and told of her ability to accept her life. We are so proud of her.

People keep saying they are feeling the vibe, the transplant is not far away. Remember that I just wrote about this and the diversions and the mind games we play to get us by. We know it is that everyone is feeling hopeful and that they are pulling for her. We need this support. It helps so much. We do know that there is a game to this but really, so what, it helps everyone.

Forget for a minute about my recent moralizing about the need to be so Zen and in the moment and lets have a little fun.... It can help you too. Anna now has decided that a great day for something wonderful to happen like a transplant would be 10-10-10. It is coming up. What do you think? We spent a little time today during treatment to put this date to song. See what you can do with it.

It goes like this ten ten Ten, ten ten Ten, ten, ten, ten, ten ,ten, ten, ten ten Ten...... now sing this over and over............
(The capitalized Ten is of a lower octave, accented and the note is carried longer than the first two tens)

Can you do it? What tune can you devise? Bet you will be singing it all day.........

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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.