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.
- I am a 31-year-old sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient, and dog owner living in NYC's beautiful West Village. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with 10,000,000 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 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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