Monday, December 14, 2009

Cf clinic

So I got some good news and bad new today. I'll go with the bad news first since I'm the only one that considers this bad news... my fev1 has not made it back up to 90% from before pregnancy. For those who don't know me I am a very competitive person. I compete with myself and I like to push myself, and I criticize myself maybe way more than I should. I will have to say that this visit was surprising in a good way considering the nervous wreck I was yesterday... well for the last week actually. I do believe I can get back to 90%. I've went from 50% to 90% before. I don't like to just accept things I like to push myself. My mom likes to say I go from one extreme to the next. Either I go at something way too hard or I give up (which isn't really good). I am over all happy with todays visit but I guess I'm kinda one of those that can always find something to pick out about myself I'd like to change that I'm not happy with. My team thinks 90% can be achieved again :) I myself am shooting for 95% I was a freshmen in high school the last time I was there. I believe with a rigorous exercise plan (like I had back then) paired with the addition of the advair (that I didn't have then) and a few other drugs it can be achieved. Some may call me crazy (that happens alot) but "I" believe.

Anyway for the good news from today, these are my pft results....

This was actually the first time I blew today, they did 3 in all the first was 81 the second 82 and the third 80. They're supposed to take the best one but me and the "new pft lady" were talking so intently that she must have printed the first one by mistake. Anyway that's ok cause it's only 1% off so I won't be "too" mad lol :) But I'm still counting it I blew 82 today! Idk if you can really see the results too well so my fev1 was 2.49 L and 81% my fvc was 3.84 L and 109% that is if I'm reading this thing right lol, but that's what the lady said. I don't know what the other numbers mean but judging by the predicted and my numbers they can't be good. Until I started educating myself here pretty recently I only knew one number that was my lung function number they told me everytime I didn't really know the difference or what an fev1 or fvc was so I'm still learning.

Apparently I freaked for nothing. No antibiotics needed. My sinus looked good, just a little red. I know I keep mentioning the dry air this time of year but it "REALLY" affects me. Before I turned my humidifier on I felt like i was choking! It's like it dried everything up. Like the mucus was still there just drying up like it was turning to cement. I was coughing like crazy because my sinus would drain a little bit into my throat but was so sticky I couldn't get it out! It is amazing how such a relatively small thing can affect us so much!

I do have a theory as to why I freak everytime it's close to clinic time. I believe it's because on a daily basis I do treatments I cough and it's so natural to me that I don't think about it. Life goes on and I guess I ignore it. But when it comes time for clinic to see how I'm doing I start noticing every little cough every everything not to mention stress seems to mess with my asthma and I freak! Of course I'm gonna cough up globs of mucus.... I have cystic fibrosis!!!! But I just seem to notice it when going to see my team.

......Anyway some more good news they called my prescription for pancrease 20, 2 with meals and 1 with snacks back in because of the switch that somehow happened. They said they didn't know how it happened, but they weren't happy about it. My tummy has been so bloated and well I got the same result taking them as I would if I hadn't taken any. I have been so miserable for 2 months now, so I'm so glad to get that changed, because I honestly look like I'm 6 months pregnant lol.

Speaking of pregnancy, that topic came up for discussion (no I'm not preggo and not trying... yet). They seemed supportive of me having another child (of course I didn't consult them the first time lol, they said I was an adult and healthy so it was "my" decision), I think it was mainly because becoming a mommy gave me a renewed confidence in my abilities and has made me try harder, and call me crazy but the hormones made me almost better than before I was pregnant. I mean I seem to get a better result with less effort... I know that I can't live forever and neither can J and I don't want Lily to be alone. I'd like for them to be only a couple to 3 years apart so they could be close. I mean I think that if (God forbid) I do leave this earth young I think she would cope better if she had a sibling to lean on. Most people tend to disagree with me there, that's ok we all have opinions. But since J isn't a carrier that isn't something I'm worried about. But all will happen in God's time and according to His plan. If it's not meant to be for me to have another child then I won't, simple as that.

The doctor also mentioned that he would like me to go back on hypertonic saline. I used to be on them but treatments took so long plus I had issues with the pharmacy so.... He thinks that I'm doing well without it but he wants me to stay that way. I think the docs just really want me to have options though I mean especially when I'm sick HTS helps me through a cold and when I just feel gunkier lol. I usually tend to get really sick with a cold so... I may go back on it eventually but on my Tobi months nebs take ages, maybe I should have mentioned maybe doing it on my off Tobi months. But another good thing that happened today is that I got switched back to 250/50 advair. The 500 was for my asthma during pregnancy. And apparently the extra inhaled steroid won't keep me up at night, maybe it's my extra energy...

I think that was pretty much it, oh except for my weight. It was 151 3 months ago and I was on a diet and lost 8 pounds and I was 150 today... so I've gained pretty much it all back!!! Aarrggg!!!

Sorry this post was so loooooong... but I want to thank all my loyal followers, and the ones who left me comments yesterday when I was freaking out. It really made me feel more (cf)normal and that I had people that care. I do freak EVERY time so be prepared lol

Hope all is well


  1. So happy you had a good visit! Trust me I know about the stress of clinic. It makes me so nervous and anxious. Keep up the great work!!!

  2. Woo hoo! I'm glad your visit went well. :) I completely understand your competitive side...I'm the SAME exact way with pretty much everything in my life. Talk about an OCD/Type A personality. Haha!

  3. glad your clinic went better than you thought it was. On your numbers your FEV1 is what they measure you put out in 1 minute, your FVC is you full capacity those are the two they look at the most, the FEF 25-75% are your small airways. I know you've had better before but those are all awsome numbers, keep up what you're doing and I'm sure you'll get your 95% : )

  4. I know that you can get it up to 95%!