Thursday, May 3, 2012

Kalydeco: Week 4

This has nothing to do with Kalydeco per se, but I found it on a friend's blog and it made me laugh.
Too true, my friends. Way too true.

This will probably be my last Kalydeco update for a few weeks, at least. I seem to be settling into a "new normal"; I haven't noticed any really new effects in the last week, and so I'll probably hold off on updating again until I have more concrete information (either new changes in my body, or results from my doctor's appointment next month) to share. I might post more stuff under my Kalydeco blog label, but this will probably be the last "weekly update" for awhile.

The timing on this update is appropriate, since I just got my second shipment in the mail! I have to stay at home all day on a Kalydeco delivery day to guarantee that I'll be here to sign for the package. For some reason, they don't feel like leaving my nearly thirty thousand dollars' worth of medication on my porch step. I have no idea why.

Yesterday, when I was planning this post in my head, I intended to start out by saying that I thought I was starting to cough less. This morning, however, I woke up coughing and have been coughing off and on every since, so you see how that goes. ;) In general, though, I'm not coughing as much as I was when I began the drug, and not coughing up as much each day. My cough still tends to be much more productive than usual, though, and I still often have a lot of junk in my throat. For me, at least, I get a congested throat when I'm moving a lot of stuff out of my lungs, so I consider that a good sign! I've still been losing my voice off and on, but not as much as the second week.

My exercise tolerance continues to be good. I still get out of breath exercising, and my heartrate still goes way up, but I seem to be able to exert myself more while still staying in the same heartrate zone as before. I can't tell for sure, but I do think my resting heartrate is down at least a little. Overall, the increase in exercise tolerance is one of the most exciting things I've seen from Kalydeco thus far. As I mentioned in my last post, exercise has always been something I've struggled with, so this is an awesome development! I've greatly enjoyed both my bike rides (now that my bike is 100% fixed—I'll have to blog about the saga next week!) and going hiking with Mahon a couple of times in the last month. Another big thing I've noticed as far as exercise is concerned is that I seem to have a much quicker recovery time than I ever have before. Typically, after I have a hard workout, I am dead to the world for the rest of the day (if not several days afterwards as well). Lately, however, I've been able to go on a pretty strenuous (to me) bike ride, the kind that has me puffing and wheezing and praying hard that I'll just be able to make it to the next stop sign—and about twenty minutes after I get home, I'm feeling almost back to normal. I can't stress how unusual and exciting this is. Again, I think this is a sign that I'm able to exert myself more without it taking such a toll on my body, and I think it ties back into the lowered heartrate thing.

My sinuses continue to be much clearer than they were when I started the drug, but still not really "clear." I can still feel that my upper sinuses are pretty congested, but I can breathe through my nose again, and my sinus headaches have become very infrequent, so for right now I'll take that and be happy! If they don't continue to clear as the year goes on, I might schedule a consultation with the ENT for later this year and see if he feels like I still need surgery. My hope is that if I did need surgery, being on Kalydeco would help me stay clearer afterwards so that I wouldn't get stuck in an endless loop of surgeries (which is my personal nightmare, and the reason I've avoided a sinus clean-out up til now!).

I'm feeling better this week, and I think I'm over both last week's virus and the nasty cold symptoms from starting Kalydeco. Obviously, my "feeling well" is still far from optimal, and I still need about as much rest and care for my health as I did before. I imagine that won't change (though it would be awesome if it ever did!). I don't foresee feeling like I could stop my nebulizer and airway clearance treatments anytime in the near future—I still need 2-3 a day to keep my lungs open and clear—and honestly, even if I did feel like I could, I wouldn't do it without my doctor's express permission. I'm well aware of the lung damage that can happen even in asymptomatic CF patients, and so I can only imagine that even if I was feeling great due to Kalydeco, stuff could be happening in my lungs that I wasn't aware of.

Overall, I don't feel tremendously different than I did before I started the drug, except for the few things that I have pointed out as being noticeably changed: My exercise tolerance, the productivity of my cough, and the fact that my skin is much less salty (and prunes less when it's wet, hooray!). In general, I would say that I feel normal, but a "good normal"—like I do when I have recently finished a course of antibiotics and am all clear. That, if you ask me, is a very good thing! A lot of people have said they feel like they are breathing deeper, or like their lungs are clear and open as though they'd just finished an albuterol treatment. I don't really necessarily feel like that. I still have plenty of times during the day, particularly after exercise or if it's been awhile since my last treatment, where my lungs feel tight or wheezy. Really, they feel about like they always have when I'm not sick. But the many other indicators that Kalydeco is working miracles in my body make it so that I'm not overly worried about that. I never expected to be able to give up my daily therapies, so I'm not too upset about staying on them.

I will just end this post by saying, I can't wait until a drug like this is available for everyone I know. I truly hope it's within the next few years. I admit to feeling kind of guilty that I get to benefit from this miracle pill when most of my friends can't yet! Here's hoping that something will be on the market very soon.


  1. I love the pictures on the top. Wouldn't it be great if the friend one was true!!!
    Glad you are feeling better and it seems to be working, slowly but working. You will be a new woman the next time I see you!

  2. I think you should just write my blog! LOL. I have been trying to post new updates about how I am feeling, but I also think I am plateauing right now. I am just waiting on the doctor's appointment on the 8th to tell me for sure what is going on or what has changed. Seriously, though, almost everything that you have mentioned I have noticed as well. It's crazy!! :)
    I am glad that you are being able to exercise more though! That's great!!!

  3. Kat - seriously! ;) Although I don't know about "a new woman," since like I said, most of the changes are subtle and (except for exercise tolerance) mostly not changing my day to day life. What I AM hoping, though, is to stay out of the joint all summer!!!

    Lezly - glad I'm not the only one! Like I said, I am very happy with the way things are. I am definitely feeling better than I was when I started it, I would say. I'm excited to see what my PFT results are next month!

  4. I love the invisible disease pictures! I'm glad you are at a "good normal"! And I'm so happy for you that you can take Kalydeco! It will be interesting to see what your PFTs are...btw, what kind of a camera do you have? I always love your outdoor pictures!!

    1. Marcia, I love it too! It made me laugh (in a "that's too true" kind of way!). I'll be really interested to see what my numbers are too. My camera is a Canon Powershot SX110IS. I'm going to get a "real" camera at the end of this year, though, and I can't wait!!! :) I do love my Powershot, but I'm excited to move into the world of SLRs.


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