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

Tuesday, October 26, 2010

A Shared Journey

Day 92 going with the flow and awaiting the perfect match for Anna......

Tonight I drove to Stanford Hospital to say hello to friends whose dearest Steve was in surgery for a lung transplant. We have known this family many years, 20 + years. We were all involved in CFRI and Anna met Steve and Stephanie through CF Camp.

It was one month ago when Anna had her last pretransplant clinic appointment that we saw them. Steve who has CF was being evaluated for a transplant. Seeing him concerned and worried us. It just shows that you never know about these things. Steve has been on the list for only two weeks and his perfect match was made yesterday. As I am writing this blog he is in the final stages of his surgery. Last night it was thought his surgery would be at 2AM but it was pushed off to 2:30PM today. He is the 5th lung transplant recipient this month. Who would have ever thought that he would be transplanted before Anna? But, we are thrilled and relieved for him.

It was wonderful to sit in the waiting room with his mom, Barbara, wife, Stephanie and his best friend and sister. How exciting to think of a new life. He is 41 and he and his wife have a 3 month old baby. He now will have the energy to be a dad and live to see his child grow. So amazing, no more crappy lungs.

We dreamt about the next Transplant Olympics. In healthier days Steve was a swimmer as Anna was. I recruited Anna into this without her there (sorry Anna, an overly aggressive Mom) but we thought we would go together and watch them swim and maybe Ana and Isa and Anna and Steve could form a relay team to compete together. These ideas make you giddy. There is so much hope and possibility in the transplant arena. Yes, there are still dangers and complications and a bunch of yucky stuff our dear and courageous loved ones must endure but the good stuff is so close we can all taste it.

Sharing the journey is very special. We are rooting for them. Go Steve........... and we will continue to let it flow and let it go...........

1 comment:

AnnaBananaRamaOctober 26, 2010 at 10:47 PM
I am so excited for Steve!!!! YAY!!! Hearing about his journey makes me want this even more :) I am so happy for him. I can't wait to swim with him at the next Transplant games!
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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.