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.

A very long day, but my fight is still Stronger than this disease.

I started this as being just a Facebook post, but once I figured how long it was getting I figured I'd just include everything and post the same update on FB and my blog. I'm sorry for the multiple posts to those of you who follow me on here and Facebook.

As promised, here is a brief update on today's adventures at UCSF.

As we were told I had an appointment with one of the pulmonary tx doctors, I was also told that if time permits I may be able to see a few others from the lung transplant team. Admittedly, I know about 80% of the staff already from my past visits with my first transplant, but there are a few unfamiliar faces that I was hopeful to meet and put a name to. 

The single new face I got to meet today was one of their new social workers. She, Benito, and I had a nice long visit and got a lot of worries and questions out of the way. Yay! I am so extremely happy with this social worker... Unlike the previous ones I'd had, she really wants to be available and help however she possibly can. She may even be able to figure out how Benito and I can finally get married without me losing my insurance! SCORE!!! More on that at another time... The real reason for this update was to tell you about the retransplant option, not talk weddings (but still... YAY!!!). 

So the transplant pulmonologist sat with us for quite a while going over every possible health concern she or we had. Our biggest concern is whether or not I have enough room on my native airway to attach a new lung because my stenosis issue has made its way that high up my airway. So I go back in 2 weeks for a bronch and they'll take a look at that airway and see if there is enough space. If there is then we can move forward with the prep and testing to see if I'm eligible for retransplant. If there's not enough room, well, I don't know yet. I'm just hoping and praying that my stenosis hasn't left me with nothing to work with.

If all goes well after that, then our next step is to figure out what's going on with my liver. My dr wanting to ignore the problem is going to have to go ahead and order diagnostic testing, whether he thinks it's necessary or not. I Have to have a diagnosis before they'll consider me for retransplant.

Lastly, we need to figure out a better way of treating my acid reflux. For those that don't already know, acid reflux can lead to chronic rejection. It can be aspirated without even knowing it's happening and burn/damage lung tissue, causing chronic rejection to flare up. I'm almost convinced that this is the reason why I'm rejecting right now. While in the hospital they don't carry my usual acid blockers and I had some of the worst heartburn of my life during the past two hospital stays. It got to the point where I was having Benito sneak in my two acid blockers from home because they wouldn't let me give them my own bottles to dose me with and I was miserable.

So once these three obstacles are behind me I can begin the testing for the retransplant evaluation. Like I said, I have a Lot of stuff that needs to be done and out of the way before I'll know whether or not UCSF thinks I'm a good candidate for retransplant and will list me.

I'll try to keep you all up to date on any new developments, but until you see me post in all caps that I'm on the list, know I'm still working Hard to get to that point.

I appreciate the outpouring love and prayers I've been getting the past few weeks, especially today! Please keep it coming. Like I always say- You give me strength through the love you share with me. I may be on the verge of fighting for my life again, but I don't doubt for an instant that I am Blessed to still be here to share this incredible, crazy, Amazing journey of my life with all of you. I am So grateful for every single one of you. Love and Hugs!!

Great Strides 2013

This year's Great Strides walk was a huge success!!
Although I was still recovering from a bronch only 3 days before and I was feeling pretty darned sick with kidney/liver issues, I still managed to make it to the walk. I didn't walk this year, but stayed back with my mom and a fellow CFer friend of mine and waited for my team to walk for me. The Iron lungs raised around $3,500 this year that is going directly toward research for a cure for this awful disease! A big THANK YOU to all who donated and/or walked this year! Here is a link to my Picasa album of all the pictures we took at the walk!

Great Strides 2013 Photos

Whoa! August 1st already?!?

I've come out of my cave! I'm so sorry I haven't written an update in 4 months. I hope you can forgive me!

Let's see...

Since I've last posted, I've been keeping pretty busy and have definitely had my ups and downs with my health. On May 19th I got to lead a team at the Sacramento Great Strides walk! This was my second year leading a team, but this year was so much more fun! For starters I found a wonderful shirt printing business locally that donated their services to print team shirts for all of The Iron Lungs (our team name). This was the first time I've ever been able to provide shirts for my team, so it was so awesome to see all the people walking around wearing our team logo. We had 28 walkers this year on The Iron Lungs, 15 more than the last time we walked (2 yrs ago). I can't tell you how much it warms my heart to see my friends and family (and Benito's co-workers) gather for such a worthy cause. We had a goal set at $3,000 overall for the team, but we surpassed our goal and raised a whopping $4,070.00 making this our most successful year yet! I'm so grateful for all those on my team and can't wait to do it all over again next spring! (See above photo of MOST of our team! The family of my dear friend Kristina Love (whom passed away last fall) walked with us and made up shirts of their own saying "Love for Leah"!

On July 6th I did my last photopheresis treatment! The protocol is a total of 30 treatments and as of July 6th I'm free of the strict schedule of getting my blood tanned ;) My doctor had mentioned a few months ago the possibility of doing some sort of maintenance schedule once my 30 treatments were up, but he has yet to set that up. I'm so extremely grateful that he was willing to try photopheresis on me when nobody else was willing to treat my rejection. I'm now in "remission" and am happy to see my lung function stable again. To clarify, because I get asked a lot how much lung function I've gained back, once someone has chronic rejection (and especially for how long it went untreated in my case) the damaged tissue is no longer viable. I will not get that lost lung function back, no matter how hard I tried, but what photopheresis DID do was STOP the progression of damage done to my lungs by my immune system. I'm currently stable at 33% lung function (fev1) and 10% small airway function (fef25-75). I really couldn't ask for more of a response from the photo treatments.

Now, what most of you don't know is that Benito and I have been looking since late winter for our first home. Over the course of about 5 months we've seen countless houses and even put offers on 6, yes 6 homes! 5 of those offers were not accepted because of different reasons. We waited as patiently as we could and the right home finally came along. The 6th offer was accepted and we've since been doing all the inspections, paperwork, etc. to get into our first home! Our close of escrow is only 2 weeks away and we really couldn't be more excited. I've had the pleasure of meeting the seller and am even more confident that this is the right home for us now that I see how absolutely sweet this woman is. She's doing everything she can to make sure this home is ready for us to move into by fixing all the necessary issues before we even have to request them to be fixed. What a huge weight off our shoulders to know the home is in the best possible condition before we move into it!

So, the home is 1,299 square foot. 4 bedrooms, 2 bathrooms. GREAT covered patio in the backyard that is just begging for us to barbeque under! I just can't wait to move in and make this home OURS. I can't wait to give Roxy (our dog) a backyard to play in! The neighborhood is absolutely wonderful and I even had the opportunity to introduce myself to a few neighbors at a yard sale that was going on the same day I was there for an inspection! I can't wait to have neighbors that I can associate with and even borrow a cup of sugar from when needed ;)

My health is so-so. I'm still having problems with my breathing being too tight and wheezy, and my pain level fluctuates dramatically for no reason I can figure out. I'm just trying to ignore as much of the bad days as I can and focus on the good ones. I've had 3 bronchs since my last update. Although I felt like the brachytherapy treatment that my dr did on me in March made me feel better than I had in a very long time, it did not last as long as my dr had hoped, so he's skeptical to try it again just yet. He mentioned wanting to try and remove the existing stent I have in my right main bronchi that has fallen lower than my stenosis, but he and my CF doctors are hesitant to do that because of the risk of blood loss. That stent has been there for about 4-5 years now and scar tissue has grown all around it, so removing it is now quite a dangerous task that would require the operating room, general anesthesia, and a cardio-thoracic surgeon to perform. I'm not so sure removing the stent and replacing it with another will help my breathing, but I'm curious if it would help my pain because my pain is always in the exact same place, which also happens to be where you can feel the stent "buzzing" when I breathe. I don't think that is as coincidental as my doctors want to believe. I'm pretty sure the pain I feel has a lot to do with the stent and am considering having the stent removed purely for that reason. We'll see though... The possibility of having to have an emergency lobectomy because of tearing during removal scares me enough to really think about how necessary it is.

So that's that. Nothing else really new going on. I hope everyone is having a wonderful summer!!

Hugs & stuff :D

Ask enough and you shall receive

First of all I want to thank the readers of my blog who continually come back for updates even though I do not always have new ones to share. I also want to apologize for not updating more often. I've never been the kind of person who is able to write just a little at a time, so I seem to put off writing updates because I know it will take a huge chunk of time to do so and can never commit myself to sit down long enough with my laptop and write. I owe it to you all as friends who have offered their support and prayers to me and my family to write more often and give you the updates you come to read. So I'm going to do my best to write at LEAST once a month (a suggestion given by one of my readers) and update you something about what's going on with me. It may not be a long update, but I'll try to at least let you know how my health is holding up at the time. :)

Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.

Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!

Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!

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.