Saturday, August 11, 2012

On Getting Over It

Ever have one of those days when you're just kinda over it?

I'm feeling like that right now. Yesterday I (re)started IVs after 11 months off. Honestly, I really wanted to make a year. I really wanted to get my port out. I really wanted to just be done with all this infection nonsense. And yes, of course I realize that 11 months is, in a word, awesome. I can still vividly remember a time (read: last year) when I would have given pretty much anything for 11 months. So yes, in that sense, I know that griping about 11 months is silly. When I think about my friends still fighting for their lives or struggling for breath I remember that I have zero right to complain at this point in my life, skipping along as I am with my gorgeous new lungs. But, darn it, I still really wanted to hit that year mark. For whatever ridiculous, petty, selfish, and deeply human reason, that goal was important to me. So I'm a little bummed out about being back on IVs, even if I should be grateful. So sue me -- that is, if you want to risk it.

I woke up a few days ago feeling, well, lousy. I had a sore throat, and I was coughing some. Nothing terrible, mind you, just kind of . . . off. I'd been having some pesky but relatively unconcerning symptoms for a few days -- mostly just a slightly elevated heart rate and some high blood sugars, and a couple of instances where I felt breathless. Then the other night I climbed the stairs in my apartment and starting feeling breathless and wheezy. I grabbed my pulseox more out of habit than concern and popped it on my finger.


Ridiculous, I thought. I haven't been below 96 or so since my transplant, even when sick, and I typically run at 100 these days. So I switched the batteries, put it back on and . . .


I almost laughed out loud at that point, just because it seemed so impossible. I walked into my living room, plugged in my old monster wall pulseox that came with my O2 concentrator (the same pulseox that I haven't used in 2 full years), and stuck my finger in the monitor.


And that's when I just got angry.

I did manage to get it back up about an hour or two later, after several sinus rinses and finally coughing up what looked like an old-fashioned CF mucus plug. And then the next day I put my normal skepticism aside and dutifully called my coordinator like a good little patient. I didn't tell her that I first recognized the problem while walking up the stairs after watching both "Toddlers and Tiaras" and "Here Comes Honey Boo Boo" on TLC (hey, there are some things even my transplant team doesn't need to know!), but I was pretty honest about the rest of it. The weird thing is that I don't have a fever, am not coughing heavily, and don't have a ton of other symptoms other than some yellowish mucus and a persistent sore throat (and I've lost some weight, but I tend to lose weight if I so much as look at a low fat muffin, so that's not much help). In fact, after two days on antibiotics I'm starting to feel like nothing was ever wrong in the first place.

Except for those pesky O2 sats, that is. They keep dipping and rising, apparently just for the fun of it. When I'm walking around they can go down to the low 90s, and when I'm sitting or lying down they tend to hang out around 97-98.  Other than that everything seems to be looking up, and my mucus and cough have already settled down to pretty much nothing. I'm not sure how the bronchoscopy I have scheduled for Monday is going to go. If I continue to clear things out with rinses and the cough continues to lessen, I'd guess that it won't really show anything at all, which of course is my preferred result.

I think what has me feeling "over it" right now is, more than anything, the fact that I just don't understand. I'd like to agree with my docs that this is/was a bacterial infection -- especially since I guess there has been some improvement with antibiotics -- but it sure doesn't feel like it used to when I'd have exacerbations. And I'd like to think that I'm just overreacting and it's absolutely nothing (aside from the obvious embarrassment of wasting my doc's time, which I HATE doing and is actually my number one hang-up as a patient), but then I'm not sure how to explain the dips in numbers. Here's hoping that I have some sort of weird energy field in my apartment right now that causes all pulseox machines to go crazy and spit out phony results, but I'm guessing the chances of that are kinda slim.

So for now I'm just trying to be a patient patient, and do my IVs and take my medicines, and not draw any crazy conclusions and certainly not look anything up on the internet. I'm trusting that my docs have this one covered and that I'm not just going crazy. And I'm trying to get over my own disappointment in myself for not making it a year off the super drugs because, after all, I'm still here and still breathing and I still feel relatively decent -- and at the end of the day that ought to at least count for something.

If any of you have any similar experiences you'd like to share, feel free to share them. I always strive in my head to be some sort of perfectly rational patient who KNOWS ALL THE THINGS and never over or under reacts to anything. But for right now, I have to admit, I'm feeling a little helpless and silly.

And hopefully I'll get over it soon.


  1. I let a comment on your Facebook and just want to say how much I enjoy your blog. You help myself and many others put words to the twists and turns of transplant. Bless you for that and feel better!

  2. hey piper is you coordinator Evelyn now, im not sure if are comfortable saying so here but i am , I think she is the worst and doesn't know how to do her job, have you experienced anything like this? I will try to write you on Facebook when i reactivate my account, but I hope all is well, sorry if this comment is a bit off topic