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, December 11, 2010

New Chest Tubes........ Let it Flow!

Trying To Keep Our Spirits Up
As Banana Bunchers

Day 19 post transplant..........

Sitting in the waiting room outside of the floor of Anna's room. I finally got some chocolate. Unfortunately the gift shop was closed so had to resort to the candy machine for Hershey's, but hey, that and some tea with milk are just what I need.

Anna is in the room with Dr. Steve having two new chest tubes put in. Think flow............ We are hoping that the fluid build up from the irritated chest wall will all come out easily. We will know by the end of the day tomorrow how it is going. If this does not work then she has to have another surgery to clean it out. Oh please, can it all be a little easier on my sweet Anna? She is such a trouper. It is time for things to go in her favor.

Dr. Steve tells us this happens and the good thing is that they know how to fix it. It is one situation after another that they fix. So long as the fixing continues we will get there. Anna continues to pee a little more each day it seems. Kidneys are not there yet but hopefully soon. There is that soon word again. It seems to pop up all of the time especially when you want soon to be now. Can not wait until we are looking back at it all and just see the rosy side with energy, good health, lots of time on our hands and breathing deep.

While sitting here one of the docs dropped by to say things are going well for her. Things are beginning to drain. This doc says, "Anna is going to be fine. I see this sometimes where in the beginning the patient has complications then they get through them and sail ahead. That is what I anticipate for Anna." I like that sentiment.

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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.