Monday, July 12, 2010

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.


  1. Hi Piper. I'm Jen's sister...Jerry's sister in law... Sorry to hear all that you are going through. It sounds like so much. I know the CF diet...Jerry eats all the time!!!! haha... In fact, when he is grumpy...we know he is probably hungry!! Then, we plan dinner!! However, I think your sugars may be more to do with the prednisone than what you are eating. I know it's sometimes challenging to get appointments...October seems so far away. You probably need to snack in order to keep up your strength and to HEAL. You'll probably just need to cover it with the insulin. Sounds like you are doing your absolute BEST and I hope things start getting better. Keeping you in our thoughts...

  2. Oh Piper - It sucks and you have every right to rant - but what I love, no, admire about your ranting is that couched in there is your gratitude and appreciation, and the knowledge that you will get better. You have come this far. I know you'll make it even farther, but it sucks that the road is so dang bumpy!! Sending lots and lots of healing love. Are they letting you eat cookies? If so, Lola and I can whip up a batch for you and get it in the mail. No kidding.

  3. Well as I was instructed at clinic, even though I am cfrd do not change what I eat, just adjust insulin to what I eat. I take my slow actiing insulin before bed with a tiny snack. That way when I wake up my blood sugars are not high. I then take fast acting insulin for my meals and any large snacks. I am usually below 7 (im in canada)
    The big thing is to learn to count carbs in what you eat.
    The one thing thats hard is the breakfast insulin dose cause of the predsone. As it will spike your sugars. Its pretty much a try and see. Just try to stick to the same breakfasts so you can get your insulin dose to where its not spiking :)

  4. I do think that it WILL get better once you get on a lower pred dose. But, remember also that Prograf can cause higher sugars. Are you on Prograf? I don't think i've heard what anti-rej. meds you are on.

    It is hard. I don't blame you for ranting. My posts last summer were similar! Do you best. Give it time, you might not need anything eventually!


  5. Everyone needs a rant post every now and then. You deserve them! I bet once the steroid doses are lowered things will get a little better. Oh hey one my friends who is also a cyster was telling me about the shirts you made and she got from you. I was wondering how we go about getting one and what not! I would love to get one.

  6. GREAT rant, Piper! Get it out! I'd be pretty pissed, too. MAN! OF ALL THE THINGS! right?

    At least your rant posts are awesome. Tomorrow's a new day, let's see what you do with it, girl. Go get 'em.

  7. This is very similar to how i felt when i first learned i had to watch my sugars. I am going to write you a message on CF2chat soon, but right now i just don't have time. Hopefully wed I will have a good chunk of time to do it..... I wish you the best. The hardest part is you are trying to be a good patient and the blood sugars are making it difficult. I TOTALLY GET THAT!!!!

  8. Hi Piper, I feel you here. Diabetes is in some ways nothing compared to what we have been through but it has it's own category of just being relentless and annoying. It really spun me into a depression post tx.
    Anyway, what I really wanted to say is, in case you were not aware, there are two schools of thought here. It sounds like you are approaching this from the typical diabetes angle of diet and insulin. Some docs in this situation recommend this. Others, like mine, do not. Dr. Buse at UNC is one of the best endos in the country and his philosophy is that CFers need to keep eating like CFers and just cover themselves with short acting insulin. I like this approach. I would lose way too much weight otherwise. I also had to abandon the long acting because it caused me to bottom out in the middle of the night. This is a customization game. You'll have to play with what works for you. Glad everything else is going well. This too, shall become routine. XO

  9. I was just as frustrated as you are. Luckily your blood sugars are not 300 and 400 like mine where. I was spiking very high before dinner. The problem was snacking. The transplant clinic was not having me cover my snacks and the long acting insulin only covers the high from the prednisone. So my diabetes clinic started having me cover all meals and snacks and my blood sugars are stable. The hardest part is adding exercise because that will start dropping them like crazy. We are on a rollar coster but at least it has its ups.

  10. I am in the same boat, as I was just diagnosed with CFRD in April. I couldn't get an ENDO DOCTOR appt. till the 26th of JULY. What's up with that!? Of course, I saw the nurse educator, but in between, I have so many questions that remain unanswered. I am on rapid acting with meals and snacks. Still it's hard to get my sugars stable. I was told that the best thing to do is to try not to go so low 'cause that causes HIGHS! My lowest has been 43 and highest 293. I feel like a yoyo some days and it's not good on the body. I haven't had a transplant, but am 45 just being diagnosed with it. I'm sorry you have to deal with this as well as the new regimen of drugs you have to learn. But, just remember... what doesn't kill you makes you stronger and I know you have the attitude and strength to get through this. JUST KEEP EATING! LOTS!!!!! A Cyster who "feels" for you!

  11. I'm about to start switching back to short acting insulin, where I'll cover everthing I eat, meals and snacks like I was pre-transplant. Diabetes is definetly hard, and I've cursed it more than enough lately, but you'll find a good place for you don't worry. Takes time.

  12. This comment has been removed by the author.

  13. I hear ya, Piper. CFRD sucks. I thought I would evade it, but....oh well. I've chosen to eat whatever I want and then just take the amount of insulin I need. It's a juggling game that can often feel overwhelming.

    Injecting it sucks, too. But a trick I taught myself is every time I inject, I say to myself, "this is better than an hour breathing treatment." It helps me stay focused.

    As you heal, and your exercise increases, that will also help with CFRD.

    It's not fair, and it seems like we've traded one set of problems for another set. But for me, I can live and BREATHE with this problem. Hang in there!


  14. Oh this sucks. But I admire your honesty for putting it out there and you totally have the right to be frustrated cos no one said it was all gonna be a walk in the park.

    And it's better to blog about it than let all the pred-fueled thoughts just fester xx

  15. Don't fret about the excellent rant. I went into a tirade myself. No objects were thrown, but the flow of expletives was profuse, and I felt better after the blowout. What follows is some post-rant commentary. Yes, CFRD sucks royally, and it must suck even more after receipt of those preciously good lungs. But keep this point in mind. The key to handling the big D is learning how to control your blood sugar, then disciplining yourself to exercise that control. As time goes by, your body will speak to you, and you'll pick up the signals that tell you what to do. When control becomes second nature, the malady becomes an inconvenience, not a tractor pull-drag. Also, just a stone's throw from cousin Gloria in Minnesota is the Nicollet Clinic, which is a world class diabetes education and treatment center. Look them up on Google. When you can travel, go there. Afterwards we can get together, watch home movies, laugh, compare notes, and generally hang out. And take up Gloria on those cookies. She's an excellent cook. Remember too that we love you!! And the hard part's over. Much, much love,
    Uncle Bill and Tia Isa

  16. Heidi Karn BarkerJuly 14, 2010 at 4:09 PM


    I think the other Heidi is right - in addition to the prednisone, prograf may also cause high blood sugars. Fan-freaking-tastic, right?

    Another frustrating aspect is discovering that CFRD is not like other types of diabetes. We, of course, are in our own special category when it comes to this stuff. Yay!

    I am also taking long-acting insulin at night and then short-acting insulin with meals and snacks - pretty much anything with carbs. Someone else mentioned that it gets more difficult with exercise to keep the sugar count normal - that's true, but once you've gotten through this initial healing phase, it'll be easier. I promise.

    I also had to wait three months before even getting into an endo clinic - I pretty much just self-medicated during that time. Yeah, maybe not the best option, but I was having insanely high blood sugars, so little by litte, I adjusted the units/carbs ratio until I found a good fit to get me through until I received more guidance.

    Anyways, just wanted to let you know I'm thinking of you and praying that everything becomes more easy and you and your new lungs continue to heal. Later, gator.

  17. well crud! don't mind sharing in the cfrd rant. it sure does throw a real kink (ok that may be an understatement) into the mix. as you kind of get your brain around it i would highly recommend considering an insulin pump (if you find you need a long term solution). for me, it has made managing cfrd a possibility. since calories are so important it is no longer me considering if what i want to eat is worth the "pain" (real and psychological) of shooting the insulin to cover it. it also makes adjusting much easier for when i get sick, stress, or steroids. hang in there. tomorrow is a new day! :-)

  18. Piper, You have the best blog. It's so *real* - ups and downs and rants all included. Thanks for the glimpse into your world. Hope you get up that new learning curve fast, Cyster! {{{hugs}}} ~J

  19. man! that is never the news you want to hear, just when you think life is getting easier, you go and get diagnosed with diabetes. :( Well i did a little research and I am sure you have this already, but the CFF has a great resource:

    starting around page 35 it gives you examples of foods you can/should eat. Just remember that every part of life has an associated learning curve, and you're a quick learner, so you'll get this one figured out in no time!
    - Amy

  20. Do they think you would be a good candidate for an insulin pump? I recommend a Medtronic Minimed pump with a continuous blood glucose monitoring system. I have had CFRD for almost 10 years and also have to deal with frequent prednisone use. It's a pain, but the sensor helps TONS! Once you get used to it, life with diabetes isn't so bad.