News we've been praying for!

I got a phone call 7:30 Monday evening from my nurse coordinator at Cedars-Sinai. Benito and I were watching tv in bed so I put it on speakerphone and proceeded to hear the best news I've heard in a Long time...
The lung transplant team hired on a new person that has experience working with petitions to unos so she and the team have been working extra hard for the last month to get all my records re sent along with another petition letter to ask that unos make an exception in my unique case so I can be brought up the heart list where I actually have a chance of getting organs instead of waiting at the bottom while my lungs fail. As of Monday evening I'm officially listed on the heart list as a status 1B instead of my previous status 2! What does this mean...
I am told I have approximately 7-10 people waiting ahead of me at Cedars as a status 1A and the majority of people are men who will require larger hearts for their transplants to be successful. I on the other hand can accept a woman's smaller heart or even a man's large heart because of my CF barrel chest. My nurse coordinator told us that my call could potentially come at any time now... It could be tomorrow or January, but it's no longer a question of whether I'll get organs anymore, it's only a question of how soon it will happen. Before hanging up my coordinator told us that he didn't want to say that they had given up on me, but they really did not know how they were going to make sure I got lungs in time. They are really excited about the change as well. Such a great feeling knowing my transplant team cares so much about me and my future.
This new change in listing placement also means that I will still be able to donate my own heart to another Cedars-Sinai patient waiting for their gift of life. As it was, we were looking at me having to wait until my heart inevitably began to fail due to the stress my failing lungs are placing on it then and only then would we be able to attempt to bring me up the heart list. That's all changed now, thank God! It was such a difficult thing to ask God for my heart to begin to fail so I could get lungs... My prayers have been heard and something else came along that made it possible for me to get my transplant while still being able to donate my heart to someone in need. God is GOOD, you all!! Whether you're a believer or not, it's hard to ignore that there has been a higher power at work here...
I lost a very dear friend from high school this last week to a heart attack of all things... I can't help but feel like my friend Andrew was part of helping make the impossible possible. With the help of the amazing team at Cedars-Sinai, my UCD doctors with their persistence in getting Cedars to not give up, and my wonderful friends and family, I've been given HOPE again!! Thank you all SO much for all your prayers, donations to my transplant fund, love, but most of all, thank you for your faith in my ability to persevere through all that I've been up against this last 18 or so months. I get my strength from you and your love and faith in me. Thank you! 
Meanwhile Benito and I are making sure we're going to be ready for that call to come any day now! :-)
Stay tuned!

Ten years is something to celebrate!

Tomorrow is a big day for me... and for a family that I've only dreamed about meeting. Tomorrow will be ten years since my double lung transplant surgery. Ten years ago a family was having to say their goodbyes to someone they love, while I was hoping for the best, in my heart I was saying goodbye to everyone I love, completely unsure whether or not I'll ever see them again. During the past ten years I have not had a single day go by that I haven't thought about my donor and his/her family. I have periods of guilt and grief for the loss of this person I've never met, but over the years I've come to understand that that's always going to be a part of me and I'm okay with that. I'm alive today because someone chose to give the most selfless gift a person can give... When it was their time to leave this world, they wanted to be an organ donor and save lives. Turning a very sad, dark time into something bright and beautiful. It just so happened I was the incredibly lucky person who received this hero's lungs. Every breath I take is through their lungs, every word I speak is spoken with the air my donor is giving me.

Over the course of the last ten years I've had to learn how to manage this new life I've been given. Every transplant patient in waiting is told that having a transplant does not make you healthy again; you're actually trading one disease for another. That couldn't be more true. In some ways, having my CF lungs was easier because I spent my entire life with them... I knew all the tiny clues my body would give me when it was time for a tune-up (something we CFers call a hospitalization w/IV antibiotics and vigorous chest physio therapy). Little surprised me with my CF lungs. After my transplant I've had to learn what to look out for that could mean infection, rejection, and in my unique case, my airway collapsing. I've had to learn how to constantly watch everyone around me and recognize when I see someone with a little sniffle or a cough, and as politely as I could, make some distance between them and I.

In the last 10 years I've had a LOT of ups and downs with my health. I've been able to either overcome or learn to live with every difficulty that's come my way, from tachycardia, neuropathy, chronic lung pain, severe bronchial stenosis that requires balloon and laser intervention as often as every three weeks, to two occurrences  of chronic rejection, the list could go on for quite a while, but I won't bore you with all that. What I'd like to focus on is the ups I've been able to experience in the ten years since receiving my gift of life...


I took two semesters of ballroom dance lessons with Benito. I found something inside myself while I was learning the Waltz and Fox Trot... For the first time in my life I was good at and enjoyed a physically demanding activity without having to stop every minute or two so I could catch my breath. When I lost so much lung function with my first bout of chronic rejection, I had a hard time giving up dancing. Even now, with my 26% lung function you can catch me dancing the cha-cha or waltz with my dog or broom. Dancing became a real passion of mine and I look forward to taking classes again if/when I'm retransplanted someday.

I have been able to watch my niece Anna grow into a beautiful, intelligent young lady. She is a mini-me and it makes me so happy to talk about books with her. I've watched my nephew Tyson grow from a little baby to a big hearted, skateboard loving, little boy who does whatever he can to make an audience laugh. Two and a half years ago Benito and I got to welcome into the world our niece Maricela. She is so full of life and giggles that just spending 5 minutes with her will be enough to turn your bummer day into a great one. Benito and I are so blessed to have them in our lives.

This October Benito and I will be celebrating 6 years together. Due to all the craziness of my health insurance we can't get married any time soon, but that's okay. We bought our first home together 2 years ago and we feel pretty content with how things are between us. Don't get me wrong, when we figure out how to marry and still have full coverage insurance we can afford, we're going for it, but we don't feel like we're missing out on anything a married couple would have except shared taxes and a piece of paper.

Last month I finally worked up the strength and courage to write a second letter to my donor family. I wrote a letter when I was one year post, but I will never know if that letter ever made it to the family. The letter I sent last month was given to someone a friend put me in touch with who works on the recipient side of things, so she knows whom to get my letter to that will be able to pass it on to my donor family. In all honesty, writing that letter brought me a ton of peace and happiness. It's very important to me that ten years after the loss of their loved one, they know that I'm still alive and kicking, grateful for their loved one's gift.

I considered using this opportunity to update on my current health going-ons, but I decided against it, wanting this post to be purely about my 10 year Breathday. I'll post an update in the coming week with everything that's happened in the months since my last update. Just know that I'm home, I'm "stable", and I'm in pursuit of a hospital willing to evaluate me for retransplant.

The last thing I really wanted to say to all who read this is THANK YOU. In the time leading up to my transplant, the time I was living in San Francisco recuperating from my transplant, and all the time since, I've been blessed to have so many true friends and family help wherever they could. I could not have gotten this far without the love, support, and inspiration I received from those that love me. Thank you for these ten years of love, thoughts, prayers, and encouraging words when I feel overwhelmed and tired. I will Never give up while I have your love pushing me forward.

Brachytherapy- Take 2

Hello friends!

It has been about 6 months since I've posted an update, but there hasn't been a whole lot to share in that time.

I've gotten into a somewhat routine of going every 4 weeks to be bronched and having my right main bronchi opened. Due to an overgrowth of scar tissue my right main bronchi gets so small that my doctor can barely thread a tiny wire through it, so you can imagine how difficult it is to breathe through. When it gets that small my dr has to basically guess where the center is and makes a small slit so he can get the bronchoscope through the hole and then balloons it open as much as possible. Most times he'll then use a laser to burn away the scar tissue, which leaves me feeling pretty awful for about a week, then able to really BREATHE for a good two weeks before it begins to tighten back up again. It's a pretty frustrating roller coaster, but it's the only thing we've found that "works". We've tried putting in stents to hold the airway open, but because of the shape of the stenosis it doesn't want to stay put. Having a stent able to move from where it's intended to be can cause a whole lot of unwanted problems, including an increase of scar tissue and choking if it lodged itself sideways. So we've given up on trying to make a stent work. We tried freezing, but it actually made my airways even more inflamed, so we never tried that again. About 18 months ago my bronch / end stage pulmonology doctor got in touch with the radiation oncology team and we tried a brachytherapy treatment. Basically they did a 3 full minute blast of strong radiation directly on the stenosis hoping that the radiation would break down the scar tissue w/out hurting too much of my healthy tissue. It was a tough recovery, but I felt like it gave me a little more time before needing another bronch. My pulm doc wasn't convinced that it worked well enough to try it again, given that it's such a heavy dose of radiation to one specific spot, which increases my risk of lung cancer dramatically. So we never entertained that idea of brachytherapy again. In the last 18 months the time between my need for bronchs have gradually decreased from every 8, to 6, to now needing a bronch no later than every 4 weeks. By week 3 I'm usually struggling pretty bad, so this window of feeling "good" is shrinking.
On Friday I had an appointment with my bronch doctor. I wanted him to see me at my "best" because he only sees me awake for a few minutes prior to each bronch and I'm never feeling well at those times. I wanted him to see how "good" I can feel, and to discuss options to widen the gap between bronchs. After going back and forth about our lack of options, I brought up brachytherapy up again. Because we have zero other options at this point, he's willing to give brachy ONE more try, but he's not willing to do more than that because the risk of cancer I'd be bringing to myself. So he's going to get in touch with the radiation oncology team again and set up a two part treatment this time around. He wants to bronch me one day, then the following day do the first brachytherapy treatment, then no more than 7 days after that, a repeat brachytherapy treatment. He's hoping that a two part treatment will have better results and will continue to break down the scar tissue for a longer period of time. This is our Last ditch effort before we have to agree that the bronchs are our ongoing future of treating the stenosis. If you're a praying person, I'd really appreciate all the prayers that this method works so I don't have to continue this frustrating and scary roller coaster. I've begun having anxiety attacks when my airway is super narrow and I feel like I can't ever get enough air. Sleeping on 5-6 pillows then waking up with an anxiety attack is not my idea of a good night's rest, so I'm really counting on this brachytherapy helping me.

About a month ago, one week after a bronch I was feeling the BEST I have felt in as long as I can remember. I felt like my airway was completely open and I got to feel for the first time what 34% lung function feels like, which isn't all that bad! I have been feeling like I've been suffocating for a few years, but I realized last month that that suffocating feeling is mostly because of the stenosis, not my low lung function. I had NO idea I could still breathe that well to be honest. I thought I lost that feeling forever, but it just took a really good bronch to open things up well enough for me to fully breathe to my capacity. I took full advantage of those couple of weeks of feeling great and exercised on our elliptical every day, painted our dining room and kitchen, and got a lot of small jobs done around the house that have been put off since moving in a year ago. I had high hopes of feeling that great again after this last bronch I had about 10 days ago, but due to a sinus infection and feeling overall pretty blah, I haven't felt too hot this time around. I'm on a 10 day course of an oral antibiotic for the sinus infection, so I'm hoping that the fevers, headaches, and overall body aches go away soon enough so I can have a few days of feeling really good before my airway gets too tight again.

Benito turned 30 at the end of August, so we rented a car and drove to San Diego where one of this friends and his wife now live. They were wonderful hosts and we had such a blast during the 4 days we were there. We saw a Padres/Giants baseball game, saw a movie at the ritziest theater I have EVER seen let alone been in, enjoyed a beautiful sunset in La Jolla, and got to be tourists with some of the best tour guides! It was a trip we'll never forget and we're both hopeful to go visit again sometime soon. On our long drive home, we were lucky enough to meet up with a very long time friend of mine that I met on a CF forum about 10 years ago, but had yet to meet in person. The three of us had lunch and a very nice visit together. Mike is just as awesome in real life as he is over the internet.

That's it for now. I hope you're all doing well and enjoying the beautiful colors of fall! I just LOVE this time of year :-)

Michael Adams and I - meeting for the first time after 10 years!

Life happens in between blog posts

Howdy! I can just imagine your eyes have bugged out in complete SHOCK to see that I have posted an update to my blog. Please blink a few times and continue reading...

6 months since my last update... Wow!

First off, I have to tell the world that I am in LOVE with our new home! I'm still in shock every time I wake up in this beautiful home. Being a homeowner had always been a dream, but I had no idea I would love it this much! The flowers that I planted in January are now starting to bloom and have made our home even more beautiful. I walk around outside just about every day to admire the blooming flowers that I planted or that the previous owner had planted and are just now showing their beauty. Once we got the essential living things unpacked, organized, and decorated, we kind of stopped cold with painting and doing all the things we had planned on doing once we moved in. It's just so nice to be able to relax in your own home and not be rushed to paint the spare bathroom, ya know?!? Another huge plus to our move is that we have made some amazing friends that just so happen to be neighbors. These two couples are so caring and generous that there have been a few times where after a bronch or when I'm just not feeling well, these couples would bring over a home cooked dinner for Benito and I. At one dinner, the couple went as far as bringing paper plates and plastic cups so we wouldn't even have to worry about clean-up afterward. We feel so blessed to have found such amazing people to call friends.

The last time I updated I had talked to my doctor about planning on getting things in order for when the need to be re-listed for transplant came to a head. Since then I have been on a roller coaster of whether or not the drop in lung function is due to chronic rejection coming back or my stenosis causing more problems than usual. Just this last Monday I had CF clinic and blew a 36% fev1 with my PFTs! So we came to the exciting conclusion that my 10% drop in lung function is purely because the stenosis gets SO closed up (literally pin sized). What a relief it was to see my PFTs back up to my previous baseline! So now as far as retransplant goes, I'm in no rush to get re-evaluated and put back on the list for a second transplant. We still need to be hyper aware of any changes, so if/when the times comes where I need to be listed quickly, I'll be ready. In the meantime, the ongoing issues with the stenosis is my main struggle. I have already had 4 bronchs this year to open up my airway and it seems that each time I go in to have it opened, it's closed off even more than the time before. I wish there was a long term solution to the problem, but for now the only thing we can do is continue to go have the airway lasered open once I feel like it's gotten too narrow.

Now, on to the latest news that I wanted to share:

A week ago I had my annual dermatology appointment where they check me head to toe for anything suspicious that could potentially turn into skin cancer. Being on the immunosuppressive drugs for 8 1/2 years now, plus the 15 months of photopheresis treatments I did has made me much more prone to cancers, especially skin cancers, so I have to be very aware of any changes in my skin. I have had about 6 or 7 pre-cancerous spots frozen off, but nothing serious has ever come up. During the visit last week I told the dermatologist that the spot they have previously frozen 3 times just comes right back every time, so she took a biopsy of it just to be on the safe side. Five days after the biopsy I got a call from the dermatologist herself saying that the biopsy tested positive for squamous cell carcinoma, the second most common forms of skin cancer. She gave me two choices, I could: A) have the skin surrounding the carcinoma cut away, then stitched up to close the large opening. This will most likely cause a large scar and because of the stitches, has a larger potential of infection. Or, I could: B) do a scrape and burn procedure where they would scrape scrape scrape, then burn the site with a 1,200* cauterizing tool, and repeat these steps over and over with the last round of scrapes being sent to pathology to make sure it was cancer cell free. I couldn't care less about the scar, but the increased risk of infection with stitches made me choose the scrape and burn method. I have the removal scheduled for next Friday, April 19th. My father and his wife had a little girl that was diagnosed with cancer at 1 year and later passed away at 5 years old, so the big C word is terrifying in my family. I made sure to try and break the news of this skin cancer gently to my family before making it public, so I could explain the best I could about the risks and treatments before they could think the worse. I'm very optimistic that I won't have to worry about this specific spot again after the removal next week. I will however be much more aware of any spots that come up and will insist that my dermatologist biopsy anything that continues to come back after two freezings.

Lastly, the most exciting news to share is that since my last update I celebrated a very important birthday... I turned 30!! Growing up with this nasty disease and watching so many of my friends pass away because of it, I never imagined I would still be here to see 30 years old, but here I am!! Happier now than I ever have been, too! :)
Here's to another 30 years!!!

Here are a few photos of the skin cancer on my arm. Everyone needs to be super diligent with their sunscreen when they are out and about! The majority of my spots I get are on my forearms and hands and I can only imagine it's because that's where I'm most exposed while driving. I'm going to be much better about applying sunscreen before driving!

Picture 1) pre-biopsy

 

 Picture 2) five days post biopsy. My dermatologist thinks that it's healing so much slower than even my norm because the cancer cells won't allow it. Hopefully once they remove ALL the cancer cells it will heal quickly.

Before I end this update, I want to add that I'm very excited to be leading a team at the Great Strides walk for the third time on May 18th. If you're interested in joining my team, or donating toward my walk then PLEASE visit my Great Strides page! You can find my page by clicking on the Great Strides banner link on the upper right hand side of my blog. Thank you!!

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

Great Strides 2009

Hello friends and family!
Yesterday was Chico, California's very first Great Strides walk, and let me tell you... It was a success!! Even though it was HOT outside, we all had a Great time with one another raising awareness and donations towards finding a cure for Cystic Fibrosis.
The tally hasn't been in yet, but I think we did exceptionally well in raising donations this year. Even though our economy isn't doing so well right now, people are still eager to give to such a good cause! It warms my heart to be surrounded by such caring people. Thank you!!
Our team leader (and fellow CFer) unfortunately had to be admitted into the hospital the night before the walk, so she couldn't be there with us, but like I told her: I'm glad she put her own health first. I was grateful to have some of my closest friends there to support me; I just can't thank them enough!
Here are a few pictures I took at the walk. I took a few others with my 35mm, so once I get those developed I'll be able to post more.