9-24-07
Hi friends,
I hope you all are well. I wanted to report more good news! Hooray!Praise God!
Ana had a bronchoscopy last week and today her doctor’s they said “THERE IS NO EVIDENCE OF REJECTION!”. We can sigh with relief for now, and her body is accepting the new lungs. How blessed. Her pulmonary function test also went up 4% to 55%! Although this is still average, the docs are pleased that she’s going on the right trajectory.
On Friday, Ana, Rob and I went to Sawyer camp trail. Since Ana was 10 weeks post-transplant, her goal was to bike 10 miles- something she did in August 2000. After 1 1/2 hours, she did it! She had to get off to rest a lot, and struggled on the hills, but she’s the little engine that could and kept pushing. I warned her not to expect the milestones of her first transplant, reminding her that it’s okay to accept fewer athletic achievements the second time around. I also said if she did 10 miles in 10 weeks, does that mean I have to do 216 miles since I’m 216 weeks post-transplant!?!?! I was lucky to celebrate running 9 miles, training for the upcoming half marathon. But it damn near killed me.
We were happy to be able to perform and be interviewed on Channel 36 for the CF Foundation last week. It appeared on TV on Sunday morning. It was very challenging for Ana to focus and say something articulate. She said, “I have to work soooooo hard- as hard -it’s like jogging up a hill for my muscles, it’s that hard to concentrate on thinking.” No one ever talks about the mental effects of the transplant drugs… how people who once were smart now struggle with attention/concentration problems, word-finding difficulty, and worst of all, significant memory loss. Nor do we recipients have any right to complain about these seemingly minor consequences, for the magnitude of our gain- we can breathe, we can live again. So excuse me if I’m whiney. It is just an adjustment to the life we had before.
We are busy marketing the book and I realize how self-conscious I am about everything in our lives soon becoming public for the world to see. I have been struggling with why just our story is important… all 7 billion people on this planet have an equally important story to tell. I also am self-conscious of the focus on my disease, something I was just born and lived with, not a skill/knowledge set that I learned and excelled at.
Anyway, I was fortunate to receive a wonderful web entry from an acquaintance from a few years ago, and she said:
“I was so glad to hear your story this morning on tv and to read more on your website. Your story is very inspirational, not just for families affected by cystic fibrosis, but for anyone who is dealing with difficult challenges. And it’s not just about the illness, it’s about the attitude and approach you both have chosen to take. The 3 values you’ve listed on the website are important for anyone to use… compassion for others, an appreciation for life no matter what it brings you, and a spirit that never gives up.”
I decided if our book can give one person hope and encouragement, then it’s all worth it.
Thank you, Nancy, for sharing these words with me. Just what I needed to hear.
I thank you all for your ongoing love and support. Six more weeks until the book comes out!
Take care and may you all take a great big deep breath right now.
Love, Isa