Update

I am sorry I have not posted much lately. I have honestly been out having more fun and doing my life, and i honestly haven't been inspired to make the time to sit here and write. But i feel like i want to let people know what is going on these days, so here i sit attempting to update you.

My days at Rehab have been great. I am getting stronger each time, walking faster, doing more machines, and exercising for a whole hour!!! I can't explain how strange that is for me. Not JUST that i am doing the exercise, but that i feel GOOD doing it, and AFTER it. That is something i have never experienced in my life. Even when i was a little girl and a great swimmer, the exercise was always difficult, and i felt horrible after. I used to get headaches, and just total body fatigue. People always spoke of how exercise makes you FEEL BETTER... and i just never understood that until now. It does actually GIVE you energy instead of taking it all away.

On Wed. my mom and i took the day to go to the beach. It was beautiful. I haven't been to the beach in over a year so it was amazing to be back in the salty clean air. The weather was ridiculously nice. It was at least 70 degrees. We found sea glass, walked, and relaxed. It was a fantastic day. I am so thankful to be alive!



On the health front I have been graduated to going to clinic every two weeks, instead of every week. I also got my picc line out, which means i am totally tube free!!! My kidneys are still doing well, and all my levels are good. The only issue right now is my blood sugar. I can't seem to get it under control. When i exercise it tends to skyrocket, and sporadically shoots up to 300 now a days. I am trying my best, but it is not predictable at all. Very frustrating let me tell you...

I guess that is about it. I am just enjoying life.

We Shall Overcome...

It seems appropriate that today is Martin Luther King Day as I write this post because I feel like I have truly OVERCOME the hardest time in my life thus far. I feel that I have truly defied death. I refused to succomb to my CF, I wanted an out and I got it. I have proved many times in my life that if I want something, I get it. I don't know if it is the power of positive intention, drive, will power, miracles, or whatever... But I know that I have the power to create my reality, within the realms of human existence. I am not indicating that others who were not as fortunate or lucky as me to receive the gift of life, or who lost their battle too young to CF were not deserving or somehow didn't want it, I am simply just speaking of my own experience. I am one of the lucky ones at this point.

I am finally experiencing what it is like to breathe free for the first time in my life. Free of life sustaining medical devices. Each day is a new adventure with these lungs as i keep trying new things. I have been trying to sleep without my bipap, which i was given for sleep apnea. The Sleep specialists were convinced that my sleep apnea was not due to my advanced stage CF, but my mom was never so sure about that. It didn't make sense to us that I would suddenly develop this sleep problem when my breathing was difficult and oxygen levels were low due to the disease. As the water weight has come off my face and neck,we noticed I was no longer snoring... could it be that I can be free from another machine? It sure seems so. I have slept 3 nights without the machine, and no snoring, and I have had a good sleep (except for the prednisone induced wake ups -- which happened while using the bipap as well). Because of this new accomplishment I am officially, for the first time ever in my life since my CF diagnosis free of machines. I can't explain how victorious this feels. I have overcome the shackles that have held me back from living a "normal" life for so long. My day is finally here!

Tonight I will celebrate the birth of two of my best friends, and we are all victorious, we made it, and the three of us finally get to celebrate our lives "on the other side" all together!

Today's milestones...

Today brought more milestones... My first pulmonary function test since transplant and walking 30 minutes straight. Today before clinic I did my first PFT, and I was totally nervous. Let me tell you all who don't have CF, a PFT is the test that continually predicts your fate. The numbers can bring you up, and indicate how well you are doing, or bring you right into the hospital, or indicate it is time for a transplant. These are loaded numbers when you have CF. The other thing about them is the intensity of the test when you are not doing well with CF. Blowing in the machine as hard as you can makes you run out of oxygen, turn purple and cough for many minutes after, only needing to sit and rest to do it again 3 times. Right before transplant I had to turn my oxygen up to 6liters for about5-10 minutes right after just to catch my breath..so with that experience you can just imagine why I was a little nervous. Well, today the PFT was not too bad, it was actually pretty easy. My numbers were double what they were before transplant. My fev1 was 66% and my fvc was 54% the craziest thing was my small airways were 106% when before transplant they were 9%. The docs and respiratory therapists told me that things will only get better and will keep progressing. it sounds like my numbers were pretty good for the first go at it. I must say I was shocked, I only hoped they would be 40%, so it was great, and I didnt cough or was not exhausted after. So strange.

The other thing was that my mom decided she was going to up my walking today, so we walked 30 minutes instead of the average 20. I felt the burn in my legs, but once we got home and I stretched and sat down, I miraculously felt like i still had energy and did not pass out. I still have the mental process of someone with lung disease, and I have to get my mind to catch up to my new body and abilities. My mom says i am experiencing "normal" so strange to me....

So those are my milestones for the day... Yay.

Sayonara CF Paraphernalia

Oy, I am up early with a mad tummy... Don't worry, I will be fine, it is just getting used to the fact that I am filling it up with lots of delicious food again, nothing alarming, just annoying CF stuff. Anyways on from that....

Yesterday was a great milestone for me, one that I honestly didn't even believe could ever be a reality, but it is. I not so ceremoniously, well, except with pictures, packed up my vest and put it away in the garage, threw away my used inhalers and left over expired cayston. I also ripped up the oxygen in use sign from my window, after Apria took away the large tanks that blocked my front door entrance. It was glorious. Once Casey got home we also threw away the bean bag pillows we has been using for my percussion treatments, it felt absolutely victorious. It is like I won. I beat the CF. I know that isn't the case, but honestly to be able to get rid of those shackles was the greatest feeling.

Also, did I mention I did all of this in MY OWN HOUSE? This was the first time I had been inside my home with new lungs! I walked in and looked down the hall to see two pairs of pointy ears on the office bed perk up. It took them a minute to realize it was me, but I called their little names and two joyous kitties came bounding down the hall to jump on the couch and quickly head butt me. I couldn't help it, ii started to cry. My moment was interrupted by a phone call from the nurse, who asked if my mom told me that my INR level was too high, way too high, (this means not enough clotting going on with my blood) she said no knives and no falling today. Good thing that when my mom did tell me I was in sur la table, and had just walked through the knife section of the store ;). Hehe. She also said now my prograf is too high and WBC are too low. It is a constant balance, and it is amazing how quickly things change. All this really means is that I have to get more blood draws and just keep changing my meds, but things keep looking up and getting better everyday.

Before we came to my house we walked around my park. I did it 3 times! I honestly don't remember when I could do it three times, and without stopping, I don't even know if I did that at all in the past couple years. It is amazing what it means to be able to breathe. My legs are still weak and now that the swelling in my arms is gone you can see the wasting that has taken place, but I am working on it each day and see more progress. My sister pointed out the most amazing part about all of this is that each day we are headed toward getting better. Whereas with CF we were always fighting a battle to stabilize, and keep from heading in the wrong direction. The was a race against the bugs, a fight for air, and now we are healing and looking forward to a life of my own. There is no doubt there will be bumps along the way but I truly believe this will be a time for me to spread my wings in a way I never could before. I can't wait to take off!

Get Ready for the GROSS PICS!

I told you that I would post some pictures of my old lungs, and HERE THEY ARE!!! It was appropriate that they were stored in the Gross Room, as they were, pretty gross.





Here I am giving my old lungs a squeeze, trying to get that nasty mucus out that i have been fighting my whole life.


Giving some love to the lungs that carried me this far for 29 years. The lungs were chopped up into pieces because of the pathology inspections that they do in their investigations, so the lungs are not quite lung shaped anymore.

Lungs or chopped up calves liver?

I have no idea how i ever was able to breathe. They just labeled my lungs "end stage" cystic fibrosis.

Well folks, there it is... I hope you enjoyed the show. My lungs gave me a lot of life, and i squeezed every bit out of them. I am thankful for all the lessons i learned, the people i met, and the life experiences i had because of these diseased lungs... but now i am very excited to move on to a new life, with new lungs, and new breath!