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!

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

Two and a half weeks later...

Hola!

So I know I said I would update after the brachytherapy, but I was expecting to be doing this sooner than 2 and a half weeks after the fact... Sorry about that! I'm sure you can tell that I'm awful about getting on here and updating, so I'm sure you are not too surprised to see that I wasn't on here updating as soon as the treatment ended.

Well, the brachytherapy procedure itself went really well. I was there for about 7 hours, but most of that time was recovery time and visiting with the EXCELLENT nursing staff in between CT scans and threading attempts. They ended up using a "good sized" amount of radiation in a total of 3 whole minutes. Kind of a blast of radiation in a short amount of time. The idea is that it would be enough to not need to have to go back and do it again at a later date... Hopefully all the stenosis will be radiated and break down. So far so good! Don't get me wrong, I had a very rough 10 days or so after the brachytherapy. I don't know if it was coincidental that I caught some awful stomach bug the evening of the treatment, or my body had some strange reaction to the radiation, but I spent nearly 12 hours being horribly nauseous and vomiting what seemed like continuously. I was discharged from the recovery with instructions to take my oral pain med and my anti-nausea med (Phenergan) once I got home; yeah, that didn't happen. I couldn't keep anything down, so 3 hours of continuous vomiting later Benito drove me back to the hospital so I can be seen in the ER in hopes of them starting an IV and giving me something through that to stop the vomiting and control my pain. Everyone knows that being post transplant you expect to be high priority when visiting the ER and should be taken straight back to avoid all the sickies. We post transplantees avoid the ER at all costs, so it's a big deal if we are seen in one. Well, after 4 hours sitting in the ER waiting room being told "you're next" and watching my blood pressure rise by the hour (surely because of my pain increasing w/out being treated) we decided to just go home and hope that the nausea lets up enough to where I can deal with it myself. It ended up letting up enough later to where I could hold down the Phenergan and later on I attempted and succeeded to hold down my pain medicine. It's really too bad it got that bad though and without the help I needed. (It is NOT fun to vomit continuously for almost 12 hours! Talk about a migraine!!)

So here I am about 2 and a half weeks later and I THINK so far my airway is staying pretty much open. I still get wheezy, but my breathing is overall staying okay. When I go outside in the cold air I can still feel my airway tightening, but I started taking an allergy medication that may help with the asthma as well, so fingers crossed that helps that problem.

I had a full set of PFTs done on Wednesday of last week and my fev1 (lung capacity) is up to 35%, with my FEF 25-75 (small airways) at 10%!! That's about a 2% increase, so yay!! My PFTs have honestly not been this high in over a year, so this is really good news.

On Thursday of last week I had a Dermatology skin screening. Since I'm on immunosuppressant’s every day of my life and now that I'm doing the Photopheresis treatments my risk for skin cancers are much higher than a "normie" (non-transplantees). I've had a few suspicious spots on my hands and arm that a Dr froze with a liquid nitrogen gun a few months ago, but it was definitely time to get a full body scan done by a "professional". They went ahead and froze a spot on top of my right hand that has been problematic for a while, a spot on my chest that showed up about 3 months ago, and a spot on my right cheek (sideburn area if I were a man) that just popped up about 2 weeks ago and has since doubled in size. They called these Pre-cancerous Squamous Cell spots. If the spots come back I'm supposed to let them know and we'll try freezing AGAIN. Otherwise they saw a dark freckle on the bottom of my left foot (in the arch area, so luckily I'm not putting pressure on it) and decided to go ahead and biopsy and remove it right there in clinic, no warning whatsoever. To say I was nervous would be an understatement. As it turned out the only part that hurt was the lidocaine shot they gave me to numb the area first. Then they scraped away the freckle and put it into a little specimen cup and followed up by cauterizing the hole in my foot. I should get the results to the biopsy within the next week or so. Attached is the rad photo of what it looked like the next day when we put a fresh band aid on it. Cool, huh? ;)

On a side note, the excellent nurse who was in charge of my care at the Radiation Oncology dept during my brachytherapy treatment called me two days after the treatment to follow up and see how I was doing. He said that he saw that I had been waiting since September for a referral to go through and have an appointment made for the pain management clinic. So after about 6 months waiting (and 3 referrals put in by 2 different doctors) this nurse who barely knew me was able to call on my behalf and get them to set me up with an appointment! I got a phone call the following day from the pain management clinic ready to set up an appointment! The soonest they can get me in is mid-April, but I'm still so happy to have an appointment! Jean (my rad-onc nurse) is going to get a giant Thank You card when I go back in for a follow-up appointment! He did the impossible for me and I'm so extremely grateful. I'm so so SO tired of being on pain medication that only works about half the time; I'm really hoping that these doctors can help come up with an idea on how to treat my chronic pain w/out medication. My goal is to eventually wean off of the medication and NOT need it, so wish me luck! I'm kinda interested in accupuncture, so we'll see what these drs have to say about it.

That's about it! I'll update when / if anything new comes up!


Meanwhile, be nice and don't do anything I would do! :D

Brachytherapy tomorrow

Just a quick update:

I'm scheduled for that first brachytherapy treatment tomorrow afternoon. After talking again with the radiation oncology doctor yesterday I feel much better about the actual procedure. This is still new territory and the risks do scare me, but I'm hopeful that I may be able to breathe better after all this is done. Please, if you will, say an extra prayer or keep me in your good thoughts tomorrow that everything goes smoothly and I get to go home that night as planned. And of course, pray that this treatment does what we hope it will do, which is break down the scar tissue that's blocking my airway, so I can start taking full advantage of what's left of my lungs. If I could open that airway I won't feel so darn sick all the time and I won't feel like retransplant is just around the corner.

Thanks everyone! I'll try and let you know how it all went as soon as I can, but please don't be worried if you haven't heard back from me in a week. A normal bronch usually knocks me on my bum for a few days, so I expect this will be not much easier.

-Leah

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