Reflections on 3 months...

This is me... 3 months after my double lung transplant :)

Tonight i am sitting here in the exact same spot where I got the call for new lungs. It makes me pause and think back over the insanity of the last 9 months. I truly was resurrected from imminent death. I only realized once i was out of danger how very close i really was to loosing the battle to CF. Twenty years ago CF patients didn't have the opportunity that I had. CF was an absolute death sentence. At this point, the death that i will succumb to one day will not be due to end stage CF, but something else... maybe natural causes? I really did beat the disease. I didn't have that perspective when i was loosing my battle, but my mindset shifted once i realized that getting this transplant would get me out of CF lung disease forever. Even if i need another transplant one day, it won't be due to CF, that battle is over. My life has been centered around CF... a nagging clingon that would never leave. Now, I am not even referred to at the hospital as having CF, I am a lung transplant recipient. How strange that is?!

I think about the horrendous first month I had in recovery, and just like many describe for childbirth, the memories are fading. I am at the point now where no matter what i went through, I really feel it was worth it. I don't feel so delicate anymore, but i am becoming a sturdy and strong independent person again. Even more so than i have felt in a long time. I still have a ways to go to get to super-human status, but I will get there.



Today was the first day i spent alone from 8am to 5:30pm in about 9 months. Because i was doing 3 percussion treatments a day, I always had someone with me. I wasn't able to function independently. At my last clinic appointment I was cleared to drive, and my sternal precautions were lifted (meaning i can lift things over 5 lbs now). Today i drove MYSELF to the hospital for a blood draw. I came back, exercised for 35 minutes on my bike, did email, made lunch, took a nap, went to bed bath and beyond, petsmart, and took myself out for a coffee (my new addiction). I came home, watched Oprah, talked to Linda on the phone, prepared our left over dinner, and am now writing this blog post. All those things i did today would have been almost a weeks worth of activities before transplant, but today I did them all with energy to spare!!!! Hallelujah!
It brings tears to my eyes to think how far i have come in just 3 short months. Think of where i will be in 3 more months? This experience boggles my mind.

My short term goals right now are to join the "Y", and begin writing down a business plan for a program i would like to start to benefit transplant patients and their families. I want to be able to provide them with home cooked dinners, especially to the people who are out of town and don't have friends and family to help them, like ours helped us. It meant the world to us when someone brought us a meal. The kindness of healthy food, the thought, and the effort. It really meant a lot to me, to see that my mom didn't have to worry about cooking for the next couple days. (besides the fact all the food we received was delicious). I would love to provide that service to some of the families who need it... maybe i could call it "Delicious Recoveries." My goal is to develop a plan and find some funding so I can offer this as a free service. I got my work cut out for me, but i would love to give back in this way... if anyone wants to help I am open to ideas.


Can you believe it? I am making plans for the future!!! There are so many things i want to do. I can't wait to get back to Murphy's. I want to go out on the lake on the Ranger boat, with the wind blowing my hair into utter frizziness. I want to catch a big old bass (but have someone else touch it, as to avoid germs -- no sashimi remember?) I want to go to altitude and see what it is like to be able to breathe up there. I want to go back to my CF retreat and play and yell and laugh with all my friends who had to witness me at my sickest. I want to watch one of my closest friends get married in October. I want to see the final cut of "The Power of Two", I want to go on the road trip my mom and i have dreamed about for years... collecting treasures at flea markets on our way to Chicago, Illinois. Oh, and i want to see the biggest ball of yarn (don't ask). Not to mention going to a warm Caribbean island....


I am so grateful to my donor and their family. I am so grateful to my Surgeons. I am so grateful to my Doctors who have followed me after the transplant. I am so grateful for the social worker, dietitian, and my nurses. I am so grateful for my Family, who have always been there every step. Mom -- I can't say enough about how important you are. You know. Thank you. Dad -- You always make sure that we can do it. We had such special times in the hospital. Thank you. Sara -- My soul sister. You took such good care of me. You love me, no matter what. Thank you. Lou -- Thank you for being there for all of us, and loving my sister so much. Thank you. Casey -- There are no words to tell you how much i love you, and your loyalty and your never ending support of me and my whole family. Thank you, to the love of my life. Linda -- You have been more than a friend, you took care of me, slept over, and provided me with the meaning of true friendship. Thank you. Ana and Isa -- Your never ending support my entire life, thank you for showing me the way, and providing such love and support to me and my family. Thank you.
To all of those who came to the hospital -- It meant more to me than you will ever know. I needed to see your smiling faces and hear your encouraging words during those hard times. It kept me strong and fighting... we made it! Thank you. To all of those who brought food -- Thank you, it really helped. To all of those who sent cards, and prayers, and thoughts -- I felt it, all of it. My whole family did. Thank you.
To all of those who i have forgotten to mention, please know that i am thankful for everyone involved in this adventure. I was the one who underwent the surgery but this transplant happened to all of us. We all went through the journey together. I recognize it was difficult to watch the journey and everyone was so invested. Thank you for that. We as humans do so much better as a community, and i felt so supported. I could never have done it without all of you....Thank you to all of the Anna Banana's Bunch!



Here is to a new life, with new lungs and new breath! I think we can all breathe a little easier now. Amazing what a difference 3 months makes!

The Greatest Christmas Gift...

When you are a child getting the most desired gift from Santa is the greatest, most exciting thing that happens all year. You wake up in the morning to a shiny package wrapped in red and green with a huge ribbon on it. You tear into it because you simply can't wait, and there is no reason not to disregard the wrapping that makes it look so desirerable. You simply want in. Once opened you can play and play with this new toy for hours... But eventually you have to put it away to sleep. You can't take it with you on every excursion or to bed. Even though this toy brings you so much joy, over time you grow out of the gift and a new and bigger and better toy fills your mind... Making this fantastic Christmas gift dispensable. I have had this experience many times as a kid, however this year I truly received the greatest Christmas gift. My new lungs go with me everywhere... I never cease to have fun breathing with them. They have opened so many doors for new adventures, and they get to come along everywhere with me. I never have to put them away. Infact it is the opposite, I get to experienced their magic every moment of my life. The are comforting, exciting, playful, mysterious, and amazing. Every time I stop to think about this miracle that they are I am overcome with awe and gratitude. I don't think that there could ever be a greater Christmas gift. Every morning when I wake up I feel as if it is Christmas, the ability to breathe and not cough when I wake, is immeasurable. Each morning I feel that I get to unwrap that shiny red and green present and begin a new adventure. Thank you to my donor and their family......

A Normal Evening

As I went to bed last night, Casey came back from soccer and found me playing with my ipad in bed. "you are up late" he said, I told him that my wonderful friend Joanna stayed late, till 11pm! He replied "YOU had a normal evening!"

It is true, I did finally have a "normal evening". We had Joanna over for dinner, and she brought dessert. We hung out and chatted uninterrupted by treatments, only constricted by the fact that she had to drive back to SF. It was such a great experience. I am NOT used to this yet. I told her as the night was coming to a close that I had a nagging feeling that i had to do a treatment. It is so liberating not to have to do this. We talked of many things and it was so nice to experience a time that my body was not yelling to be the center of attention. It is an absolute miracle.

In other news, we received a notice in the mail announcing the SALE of our crazy upstairs neighbor's condo!!!! Yes, it is sold, but hummmmm.... he is still around. We are hoping that SOON he will FINALLY move out. There are definite signs that he is working on getting out of here. Pillows have been flying off the patio, obstructing the paths around the complex.



Also, furniture, previously in his driveway is now plopped outside on the sidewalk with a "free" sign.



So the signs of crazy moving out is starting to appear. I am nervous about the destruction that will occur when they do actually take the plunge. I guess I just will have to hold on and go for the ride...

Thank you crazy neighbor for helping to ring in the second chapter. New lungs, new breath, new life, NEW NEIGHBOR!!!!