Wednesday, October 13, 2010

Of Bugs and Blessings

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.**


  1. Hi Piper,

    I'm not a CFer or a lung transplant recipient, but I've been following your journey for quite sometime now. I remember the day you finally got your new lungs ( you had so many false alarms).
    Contrats on your 4th month Anniversary !
    Anyways, I think you're an amazing person and quite a gifted writer.
    I'm so glad that you're finally able to experience what it's like to breath normal. It must be awesome.
    Take Care

    Steve ( aka

  2. I like to think of it this way. You were so busy just LIVING life, you forgot the date. :) Just a few months ago you would have been apartment bound, computer bound, and basically not free to go out and do the things that you can do now.

    Besides, it's only a "month anniversary." I think the first month was special, since that is urually the rockiest, and I DO think that every single *day* you live since the transplant is special... but lets hold the huge parties for the 1 year anniversary. ;) I wanna be there for that one.


  3. Edit to add: (I wish you could edit comments) But, if you're gonna celebrate every month, don't take my comment to heart too much.

    I just think you're celebrating every month anyway, through actions. "Hey look Bob - I can walk around and DO things now! Because of you!"


  4. Whew! So glad we can't transfer bugs through FB, or I would be feeling REALLY guilty about possibly giving you the mycobacterium abssessus. If that is the strain you have. I was told we typically get it from steam from hot tubs/showers, surgical equipment or injections. It also lives in dust and soil. Thank goodness it's not contagious. I'm really sorry that you've learned about all of these new bugs :-( I hope the abx help <3

  5. Okay, Piper...Can I just say that your incredible ability to find the blessings in virtually any situation simply astonishes me? W-O-W! I might need to invite you to some of my pity-parties as you'd help me remember the (many) things I have to be thankful for even in the hardest times. I'm so sorry you have to deal with a few bumps in the road right now, and that some things remain unknown for the time being...but what a stoic(and an inspiration) you are. Period.

  6. Oh Piper, I'm sorry to have to welcome you to myco world. :( And FWIW I also cultured Steno Malt once, but it went away and that was the last of it. I hope you get some answers soon about the plan for the lung critters! {{{hugs}}} ~Juliet

  7. Just an FYI, Anna or I think CountryGirl on only culutred a NTM after her transplant as well (not sure of the strain) ... you might want to look her up (if youre up to it) to see what they did, I remember reading a thread about it.

    Will be praying for you as always :)

  8. Hi Piper, I recently found your blog. You truly are an inspiration. My daughter Scarlett has Spinal Muscular Atrophy type 1 and we've been struggling with pseudomonas for months now. Those respiratory bugs are horrible. Stay strong and know you are in our thoughts and prayers! Hugs,

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  10. No word from you in a while - everything okay?....

  11. How are You doing? I hope You are bussy with life and not germs.