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

Saturday, July 10, 2010

Update On Waiting

Anna got an update yesterday on the timing of our waiting to be on the waiting list. Her case will be presented on Monday and then on Wednesday it will go to the insurance company for final approval. This is taking longer because of the holiday we just had on Monday for the 4th when the team did not meet, so her case could not be reviewed until the 12th. This delayed a process that it seems can not be circumvented. We had hoped they would have sent it into the insurance company this week to save time. But, of course not, can you believe it? We are learning patience, I guess. I do not like this patience stuff. The insurance company has by law 10 days to review the case for final approval. So we wait.

In the meantime we are very aware that there have not been any lung transplants for quite a while at Stanford. This is a cyclical or "roller coaster" process. Sometimes there is a cluster of surgeries, sometimes there is a drought. We are in a drought, so perhaps this is a good time to be processed. Let us hope it picks up when she is finally listed. A curious but disturbing fact is that transplants slow down in economic recessions. Interesting to think about. It is because people do not have the means to be involved in risky behaviors. Come on President Obama, help us get this recession over with so that people will spend, spend, spend on .............. ooops, sorry. I got carried away. This is a crazy making situation to be in. Please forgive me, I think we must some how keep our sense of humor and humility as the seriousness and morbidness of this is quite intense.

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

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.