Eeeek! Has it really been over 5 months since I've posted on here?!? I'm SO sorry if I worried anyone. I'm doing okay... I've definitely had less ups than downs in the past 5 months and it's just made me feel like crawling into a cave and hibernating until everything works out on it's own, but of course I can't do that now, can I? ;)

Only 2 weeks after my last post I lost another very close friend to Cystic Fibrosis. Christen and I met at CF camp back in 1990 and have been pen-pals ever since. A few years ago she switched hospitals and started seeing the same doctor I go to, so when she was admitted into the hospital I was able to come visit and see her again after so many years just communicating via email, facebook, or telephone. I was "lucky" enough to be able to spend a few days with Christen prior to her passing away and had some long talks to her and her mom about Christen being ready to leave this world. Although talking about that with her was very difficult (especially after having said goodbye to Kristina only weeks prior), I'm glad I got to have that time with her and it helped me knowing that she was ready. I wish I could say the passing of my two closest CF friends wasn't completely devistating to me, but it was and I'm still grieving over the loss of two such beautiful and loving friends. It breaks my heart knowing that I will not see their smiling faces again until it's my own time to leave this world (which, for the record, is a very long time from now).

So as you can imagine, my holidays were difficult to get through, but they came and went and I turned another year older just before the New Year. I'm so extremely grateful to everyone who has helped me get to this age that I never expected to see. Life really is precious!! After tomorrow I drop down to every 6 weeks for the photopheresis treatments and I'll be completely finished by July! So far it looks like they are keeping the rejection from progressing any more and I haven't lost any significant lung function since last May!! I'm really so happy I finally found a doctor willing to treat me and not tell me retransplant was my only option. Yes, it's nice to know I can get another transplant later down the road when I really need one, but that time is not now, thank God. Besides the rejection at bay, my health has been really rough the past 5 months. The stenosis (narrowing) in my airway has been giving me a lot of problems so I've gone in twice now to have it lasered to open it up more and although I can feel them lasering the airway (burns and I can actually smell my lungs burning), and I feel pretty awful for a good week afterward, I feel like this is the longest periods of relief I've gotten after any intervention with the airway. I still don't have a long time of feeling able to breathe well, but it's better than not lasering. I was referred to a radiation oncology doctor in December and Benito and I both talked with her about a treatment called Brachytherapy. Aparently one doctor says they've done this treatment previously on at least one patient whom had "somewhat" similar circumstances as I, and another doctor is saying no, they've never done this before, but they are willing to try it (in theory it should work). So the brachytherapy machine was down back in December and they said they expect it to be back up and running late January. I haven't heard back from them about scheduling it, but whenever it gets scheduled I am to be scheduled for a bronch and lasering no more than 5 days prior because they want my airway to be at it's most open during the brachytherapy. Now, here is what brachytherapy is as I understand it: Brachytherapy is a form of topical radiation to a specific area, in my case the stenosis in my right main bronchi. They'll go down in my lung with a tube and figure out exactly how far down said tube needs to be in order to be "sitting" on the stenosis. Once it's placed they'll x-ray and double check it's in the correct place and tape it down to my face so it can not move. After the tube is secure they'll thread a wire which has a radioactive tip on it down the tube and have it come out just at the end of the tube so the radioactive tip will be on the stenosis. They will leave the radioactive wire there for however much time they've calculated is enough time to be beneficial, but not enough to do serious damage then pull the wire and tube back out. The idea is that the radiation will break down the cells of the scar tissue that is my stenosis and after a period of time it will have broken all the scar tissue cells down and I'll have an open airway again. The tough part is knowing how much is enough, but not too much to cause the good cells that are my actual airway to break down. Oh, and I have a much higher risk of lung cancer after 10yrs they said if I do this treatment. So, it's something to think about, and it does sound kind of desperate, but I AM desperate. I am so tired of feeling like I'm ready for another transplant when I still have 15% more lung function than I did at the time of my first transplant. This stenosis at it's worse (which is like 90% of the time) feels like an extremely SEVERE asthma attack in which medications do not help. So, I ask you, wouldn't you be desperate too?

I have day 2 of my photo treatments for this month tomorrow and I need to get to bed. They still take a lot out of me and I feel like I could sleep for a few days after each set of treatments. Again, I'm very sorry I took so long to get on here and update you all. I hope you can forgive me... It's just been a very hard year already ;)

This year I'll be leading a Cystic Fibrosis Great Strides walk team again, so if you would be so kind to visit my Great Strides page....



www.cff.org/Great_Strides/leahbailey92504

Friends are Forever

Hi friends!

It's been about 2 months since I've posted my hopeful news about how great my lungs are looking since starting the photopheresis treatments. Now, 2 months later I feel about the same as I did in the last post. The relief I got from opening up my airway via bronch and balloon was short lived. I've been struggling with my breathing feeling really tight again and went to clinic this past Monday (9/12) and spoke to my doctor about going back in and re-opening it. Dr. Morrissey said he has been doing some thinking and discussing with other pulmonary doctors there at UCD about how he could give me longer relief in between these dilations. He suggested freezing away (as you would a wart) one half side of the scar tissue which is the narrowing in the airway and going back in a few weeks later and seeing if it's staying open. If it seems like it's working, he'll go ahead and freeze the other half, but he doesn't want to do the whole thing in case it causes a lot of inflammation and closes off the airway completely. So, I have an appointment for 1pm on Friday for a bronch and to see if they can cryo (freeze) the airway. My doctor did say however that if the airway looks as open as it was after they dilated it back in July (which I highly doubt it will), he will skip the procedure and wait until it's necessary again.

I have a set of photopheresis treatments coming up tomorrow and Wednesday mornings and am looking forward to having lunch with a close friend from the hospital on one of those days. Her name is Kathy Lorenzato and she runs the music therapy program at UC Davis Med Center. I had the pleasure of meeting Kathy on one of my very first admissions to the hospital back when I was 5 years old (23 years ago, wow!). Since then, I've stayed very close to Kathy and have always looked up to her and her big heart. Recently I was emailed by a reporter from the Davis Enterprise about an article they were wanting to write about Kathy, so I got to speak to this reporter about what Kathy has done for me and what a great person she is. The article ran in the Davis Enterprise yesterday and I'm very happy with how it turned out. The link to that article is:

http://www.davisenterprise.com/home-page/featured-stories/music-therapist-brings-comfort-and-joy-to-children-who-need-it-most/

(You may need to copy and paste the above link into your browser in order to go to the site.)

August was a tough month. I lost my closest, longest known CF friend on August 22nd. Kristina was 3 years older than me and had always been a role model to me. We met at the hospital when we were young and instantly became friends. Being a few years older than me, Kristina always went through the scary CF stuff before me and was there to hold my hand when I went through it myself. She had her double lung transplant at the same hospital I had mine, only 1 year earlier. At the time Kristina had her transplant is when I was told I would need to decide whether or not I was willing to be put on the transplant list myself. So Kristina was there to answer all my questions, relieve my fears, and remind me that I can do this too. Her strength gave me strength, her courage gave me courage, and her laugh would without a doubt make me laugh too. I had a very hard time with the passing of Kristina because I no longer have her to hold my hand anymore. I feel so much more alone now, but I'm sure she's up in heaven still rooting me on. I wasn't emotionally "okay" to make it to Kristina's rosary / viewing, but I (along with Benito and my mom) went to the Funeral and I'm very glad I did. Her service was absolutely beautiful, just like her. Her mother sang Amazing Grace and although I was in tears listening, I had to smile because I know Kristina was there in spirit smiling at how beautifully her mom sang the song. At the reception after the service I had the pleasure of finally meeting Kristina's father and her best friend Shannon, whom she used to speak of Every time I talked to her. Just before the reception was over I got the courage up and stood and spoke about Kristina as I knew her. About how strong I know she was and what a wonderful friend she was to me. I've lost more friends to this horrible disease than I care to count, but the loss of Kristina has left me questioning my own fate. You see, Kristina and I were the last two [living] CFers out of our group who grew up together, roaming the halls of the adolescent ward at UCD. Losing Kristina has made me even more determined to fight this disease and not let it win though.

Just a week after Kristina passed away was Benito's birthday and knowing how much we needed some cheering up, I surprised Benito with a trip to Santa Cruz and Monterey. I wanted to keep the destination of the trip a secret, all he knew was we would be gone 1 night and to pack for weather a little cooler than he's used to here. He was determined to do the driving, saying it would be fun to drive somewhere that he doesn't know where he's going, so I let him drive, giving him step by step directions until we pulled up at the Santa Cruz Beach Boardwalk. We had a great time in Santa Cruz. The day after the boardwalk, we drove the 45 extra minutes to Monterey; somewhere I've always wanted to go (after reading all about Cannery Row in Steinbeck's Cannery Row and Sweet Thursday books). We didn't have much time to spend in Monterey because we had such a long drive home (Roxy was staying with grandma, so we had to pick her up on the way home, which added even more time), but we walked around Cannery Row and found a great place where Benito did some wine tasting. We plan on going back to Monterey when we can spend more time seeing everything because what we saw, we loved!

So that's about it. I'll write again when I have more to share.
Thanks to everyone who checks in on me from time to time!

Love & Hugs,

Leah

P.S.
In only 6 days I'll be celebrating my 7th Breathday (transplant anniversary)! Crazy how fast time flies!! :)

Kristina and I back before either of us had our transplants, May 2002.

Benito and I got our portrait done at the Beach Boardwalk, does it look like us? :D