Warning: CFRD(angerous) Curves Ahead

Apologies in advance to all my lovely readers, but the following message is nothing short of a full-on rant. For those of you unfamiliar with the rant-post variety of blogging, this means the below writing may contain any number of the following: complaining, whining, self-pity, anger and/or frustration, and maybe just a dash of cynical humor (if you're lucky). For those of you not into that kind of thing, I suggest you check back later -- preferably when my prednisone dose is a little bit lower. Which, fingers crossed (and for the sake of all our sanity), will probably be soon. Hopefully. Maybe.

Apparently my lovely new lungs gave me diabetes.

Well, okay, that's a little unfair. Actually, more than a little, considering the more accurate wording would be that my old body coupled with my ridiculous drug schedule gave my new lungs diabetes, but either way the end result is the same. I didn't have CFRD going into the transplant, and now, at least on 30 mg of pred, I do. Somewhere during that surgery and then the massive doses of steroids that followed, my pancreas decided to stop regulating my blood sugars and let me do all the work. Awesome. Thanks for that one, CF.

Anyway, it's not like I didn't expect this. I mean, sure, I hoped it wouldn't happen, but I've been around the medical block enough times to know the basic score, which is that a lot of CFers end up with screwy sugars after transplant, if not before. And I'm also experienced enough with serious illness to know that CFRD isn't the end of the world. A pain in the, um, behind? Yes. A world-ending crises? No. In other words, I was generally okay with the idea of trading old, infection-riddled lungs for healthy new ones and a little diabetes madness. I still am, in fact. It just seems like a fair swap to me.

Only it's not. It's not actually fair at all. It's not fair because stupid prednisone comes into the mix and makes it worlds more difficult than it needs to be. It's not fair because going to sleep a CFer on a "CF diet" and waking up an insulin-dependent diabetic is, it turns out, a little bit of a mindgame. It's not fair because learning all this stuff while you try to learn a new (intense) medication routine AND switch doctors AND recover AND all sorts of other things is HARD. It's not fair because, quite frankly, we have enough to deal with. And it's especially NOT FAIR when the diabetic clinic at your hospital can't give you an appointment until OCTOBER. Seriously, people, that is just. not. fair.

I feel like I'm playing "what is wrong with this picture" over and over every single day trying to figure this thing out. My lungs feel great, and I couldn't be more grateful for that, but this is seriously putting a damper on my ability to celebrate life post-tx the way that I know I should. Let me give you an example of what I'm dealing with.

Morning: wake up, discover sugars in the normal range, take long-acting insulin, eat bfast and take 30 mg prednisone.
Afternoon: check sugar and see that it is still in normal range, but slightly above 100 (where they want me to start taking insulin). Take short-acting insulin and eat lunch of tuna fish sandwich on whole wheat and diet drink.
Evening: discover that I am STARVING from not snacking all day. Worry about blood sugar so check it, see that it is slightly over 150 and then eat a piece of cheese. Literally, carb-free cheese and about 5 roasted, salted cashews. Start to feel incredibly tired. Check blood sugar and notice it is now 230. Correct it with dinner.

And then the kicker, realize that I'm absolutely, in no way, gaining back the weight I lost pre-transplant. You know, that weight that my doctors desperately want me to gain? Yeah, that weight.

How does that even happen?!

Honestly, I have no idea how to manage this. I'm going to ask (read: plead, demand, beg) for more guidance at my next transplant clinic appointment. I know they're trying to help me out here, but "eat what you want because you have CF" doesn't seem like workable advice in this instance, especially when I'm just on a sliding scale and have no idea how to apply that to eating in between meals.

Surprisingly, the whole giving up eating a lot of candy and sugary drinks thing hasn't been hard. That might be the easy part, especially if I can still have dessert after a protein-filled meal with some insulin. But I don't think having blood sugars in the 200s every single evening is going to fly much longer, and I have no idea how to stop it. I'm already not snacking, which just isn't helping my quest to look/act/feel healthy in the weight department.

So that's it, rant over. I know this will get better. I know it's trial and error. I know all of that, really I do.

But it's still not fair. And that's all I have to say about that.

You Can't Hurry Lungs

Nope, you'll just have to wait. And wait. And wait.

Now before I get blasted for being way overdramatic (another special talent of mine, I totally admit), I do want to say that I KNOW I haven't been waiting all that long by transplant standards. A couple of months is nothing compared to one to two year waits so many people experience. I totally get that and I'd like to say that I know my situation is so much better and that I'm top of the list and that I'm lucky enough to still be able to exercise and live life and not just be confined to a hospital bed without my puppy or my home or my couch or good food and I'm not hooked up to a vent or even bipap and sometimes I can go hours or half the day without sticking a cannula up my nose and yesterday I walked my dog and today I'm doing some aerobics/strength training and tomorrow I have gyrotonics and maybe somewhere in there I'll fit in my friend's bday party tonight and be social and put on a smile to look like the generally happy woman that I am and dress up to look like the healthy woman that I am not. I'd like to say all of this and be able to add that I know I'm damn lucky and I'm not complaining.

Except that I am. Complaining, that is.

The past couple of days have brought a new diagnosis for me: pulmonary osteoarthropy. Not such a big deal, I guess, except that it causes severe joint inflammation and pain.

Pain:

Pain is something I've always felt like I could just kind of shrug off. In 28 years I've never once called my doctor because of pain alone, never considered it to be a big problem in the grander scheme of things. I'm "sick" often enough as it is -- if I started calling the clinic every time something hurt, I think my "healthy" days would be cut in half, and I don't want that. I don't want to feel like that. And then this wonderful femme de la vie cystique made an offhanded comment that just kinda sorta maybe changed my entire life. "I used to just grin and bear it through pain, but now I find that I just don't have the energy to live like that." No energy to devote to pretending that pain doesn't exist. No energy to waste on sucking it up when there's so much that can be done about something as simple as pain. At 28 I have mastered the art of genuinely having fun despite pain, but I haven't ever really learned how to help myself live without it. Yeah, I know, just call me a late bloomer.

So I called my doctor, got my diagnosis, and am now back on a high prednisone taper. And you know what? It's working. I no longer cringe to stand up, or hobble around like and 80 year old, or skip my nightly writing/drawing sessions because my wrists and elbows are way too inflammed to help me express myself -- so that my brain remains inflammed as well -- and yesterday I even got down on the floor to play with my puppy for a little while without wincing. Oh yeah, and coughing/CPT/exercise (that holy trinity of CF maintenance)? So. Much. Easier.

Life is all about the little victories right now.

Anyway, I guess I'm complaining. I mean, if I ever were to complain now would probably be a pretty decent time to do it, since I had to repeat an arterial blood gas test yesterday b/c of an administrative error and another friend of mine is having to jump through a million hoops to get relisted because of his chronic rejection and I think someone I've really come to like and admire for her spunk and honesty may have had a dry run yesterday at my center and right now I'm just feeling a little discouraged at the process and at the fact that even on the pred and the azli I seem to be showing signs of an increased cough again, sort of that deep rumble in the pit of your stomach/lungs/soul that tells you the mucus is tasting grosser and the color is just a little off and whoops, was that just a little pleural pain or is that damn left lung collapsing on itself again (because I am, after all, a whole week out of IVs at this point). I guess I'm complaining because I went to get a glass of juice to take my nightly meds yesterday (at 2 am, thank you prednisone) and I actually started crying just a little at the thought of doing this to my body AGAIN -- of adding more chemicals and more side effects and more life-saving everyday miracles that I know I need but that sometimes just make things so damn difficult. I guess I'm complaining given the fact that I've now used no less than three curse words in my normally family-friendly blog.

It might be that all the waiting and the sickness is finally wearing on me just a little bit. It might be that I just need to admit to myself that this has been a REALLY rough year so that I can accept that and move on with it. It might be that I've gotten a little bit worse at sucking it up over the past 12 months or so. Or it might be the fact that two nights ago I messed up and added xopenex to my HTS neb cup, so that my treatment actually went xopenex-DNase-CPT-xopenex-moment of total frustration-HTS-Azli, and then last night I managed to change up the pattern a little by putting NOTHING in my HTS neb cup so that my treatment went more like xopenex-DNase-CPT-3 mins of blissfully unaware nebbing of nothing-more frustration-HTS-Azli. It might be any one or all of those factors, but I guess I am complaining. And maybe, like the lyrics to the old Bird's song (or the Bible) says, there is in fact a time and a purpose to do everything, even complain.

But right now I'm more hung up on a different set of lyrics that just seem oh-so-appropriate. Because how many heartaches must I stand, before I find the lungs to let me live again? And right now the only thing, that keeps me hanging on, when I feel my strength, oh it's almost gone, I remember mama said . . .

You can't hurry love. I mean lungs.