Okay, seriously, I think something out there is mocking me for complaining about not really having much to write about on the CF/transplant front lately. And when I say "mocking," what I really mean is "trying to drive me insane." Because there has been A LOT going on here in the past couple of days. And while it's mostly not what I would call particularly good news, it has served as a much-needed reminder of all I have to be grateful for, and everything I've gained since June. Which is, you know, never such a bad thing to be reminded of when you get right down to it. On the other hand, I think I've learned my lesson now.
Can we go back to boring, please? I promise I'll be good and not complain. Honest.
The first thing that happened, as you may or may not know from the blog, is that I had a bronch and got a little sick. That, in and of itself, is neither uncommon nor a particularly bad sign. Most likely it was more a reaction to the sedation anyway, and not any sort of indicator of overall health. Because the fact of the matter is I feel more or less fine, and I certainly felt great going into the bronch. If anything I've been living life a little too much lately (wait, is that even possible? But I know you guys understand what I mean). It just feels beyond amazing to be able to breathe, to have the freedom and the energy and the time to go where I want and do what I want and come home and not be run ragged. I can't even explain it. And that is definitely blessing number 1, since we're counting and all.
But anyway, I got a little sick (okay, fine, it was a lot sick - only it was for like 2 days instead of weeks, which is the big difference between now and before if you ask me), and then I got better. And then we found out that I had pseudo and aspergillus growing in my lungs - most likely stowaways from my CF lungs that had been hanging out in my sinuses and main airway, both of which still have CF of course - and we started treating those with IVs and nebs and orals, just to be safe. Which, of course, was all well and good especially for those of us in the "better safe than sorry because I no longer have an immune system to speak of because I (heart) my lungs and want to keep them" camp. Basically I was grateful to have treatment options, grateful to be able to do things from home instead of in the hospital, and grateful to have had 3 weeks off of IVs from Sept until October. All was right with the world.
A couple of days ago, my doctor called to tell me I had a new pathogen in my lungs - one not there (to any of our knowledge) before my surgery. This new bug is called Steno Malt, and interestingly enough another of my CF friends had recently cultured it as well. (Interjection: not only is this bug not passed person-to-person, but this friend lives out of state and I haven't seen her since my transplant, nor have we exchanged anything by mail. So unless the bug jumped out at me through her FB page, I'm guessing this isn't a cross-contamination issue. If bugs are spread via FB, on the other hand, the CF community is, in a word, screwed. Talk about giving new meaning to the term computer "virus.") Okay so fine, I have Steno Malt. The good news is that with my new lungs not having CF nothing is likely to colonize in there. So we discussed treatment plans, added some antibiotics, and I went on my way. No used crying over, um...spilled (Steno) Malt?
Fast forward to today, when I got yet another call from my doctor. Yeah, that's right, here we go again. Only this time it was a little weirder and little more creepy, to be honest. Apparently I have a mycobacterium in my lungs. No word yet as to which - only that it is NOT tuberculosis and NOT mycobacterium avium complex (MAC). I guess that means it may be abcesses, but again - we're just not sure. I am going to take the cautious route and have a CT to check for any possible nodules, which can be a byproduct of these bacterium and can, so I understand, cause all sorts of problems. Depending on the results of that, and the culture when it finally grows out, we'll devise a treatment plan (if any). In the meantime, I figure I can only make the situation worse by freaking out. Many of these myco strains aren't even really issues, and again, it's unlikely to colonize at this point from my understanding. Also, I can't stress enough that I don't appear to have an active infection right now. I'm feeling pretty good (tired from the drugs, but good), and my PFTs are totally stable. I'm so so grateful for that - and for the fact that my new lungs are still holding up beautifully despite this onslaught. Sorry, CF, you're gonna have to take your reign of terror elsewhere, because I'm not buying it. Welcome to blessing number 2.
I kind of feel peaceful about the whole thing, or as peaceful as it's possible to feel while still being (admittedly) a little freaked out. I have an entire team of great doctors who seem to be all over this - I even ran into my CF doctor yesterday and she's being consulted as well. Nothing makes me feel more secure than knowing that they have a plan (even if that plan is to do some tests and see...or even just wait) and that they're communicating that plan to me. The fact of the matter is that I trust them. A lot. And I feel very well taken care of, much as I may joke about them being hyper-vigilant. So right there: blessing number 3.
And finally, I realized at about 12:30 am this morning that yesterday, October 12th, was my 4 month transplant anniversary. Has it really been that long? And at the same time, has it really ONLY been 4 months? Wow. At first I felt a little sad that I had let the day pass without a celebration, to be honest. I mean, not that I need a reason to put on a fun dress and indulge in some really yummy food, but it's always exciting to have a special occasion, right? And then I realized that I hadn't noticed because I was too, well...busy? Happy? Not sitting around thinking about being "sick," even in the midst of all this madness? And that, friends, gave me more cause fr celebration than anything. I actually laughed out loud. To actually have a transplant anniversary is an amazing gift. To have a life so fun that you can actually forget about that amazing gift, if only for a short while, is, in a word: indescribable. Not that I would ever want to stop acknowledging and being grateful, but to have the chance to live so hard that I don't even think about my lungs? I honestly never thought I would type those words. Blessing number 4, and 5, and infinity. That one counts for everything.
Oh, and thank you, donor Bob. We make an exceptional team. (PS: Sorry about the pseudo, and the steno, and the myco. Wish I could make these silly bugs leave OUR lungs alone!)
So yes, I've learned my lesson. I'm back to counting my blessings out loud, which always seems to help when I feel a little overwhelmed, and to be honest I keep coming out ahead in my tally. I know how lucky I am to be able to look at this as a "rough patch" rather than the rest of my life. I know how precious and fragile this gift is - how much it is meant to be loved and enjoyed and cherished for exactly what it is...not a cure or a rebirth so much as a beautiful awakening. I know that God has given me this peace for a reason and that I should trust. Mostly I just know that I'm happy and busy right now, and so far it doesn't seem like the pseudo or the myco or anything else has been able to take that away from me.
I also know that CF sucks. You know, just sayin'.
Hopefully I'm well on my way to getting back to boring. In the meantime, I'll just try and enjoy the ride as much as possible. And hopefully I'll keep on forgetting what day it is, even as I try to always remember to be grateful for each and every one.
**PS: Please take a second if you haven't already to check out the links on CF/transplant over on my sidebar. I recently added two amazing blogs (A Breath of Fresh Air and Seven Stars) by two wonderful women with CF who also happen to be personal friends and role models of mine. Everyone else on there is great too, and please send me an email if you'd like your blog on the list. I'd love to check it out.**
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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