Saturday, February 18, 2012

Clinic Visit Outcome

Everything went well at my clinic visit on Thursday. I had a long talk with my doctor about a bunch of different things.

The most important subject, of course, was Kalydeco. He was very surprised when I told him that my insurance says they will cover it off-label, and he seemed a bit hesitant to prescribe it for me because of the cost, but he also said, "I don't want to be the road block to you getting it." So he said he would call Vertex and see if he could get the in vitro data. However, he also felt that, even though Kalydeco is a Pregnancy Category B drug, he didn't think the benefit was the worth the risk of me being the first pregnant human to take it. Maybe if my lung health were worse, he would have felt differently...I'm not sure. But I realized, the second he said that, it was was answer I wanted to hear because I was nervous about taking it while pregnant. So now it's time to get knocked up! ;) I am still looking forward to hearing back from him about the in vitro info, though!

I also asked him about taking Pulmozyme twice a day, either as a regular course of treatment or while sick, because I had read some research that said it may be a good idea for people with mild lung disease. He said there was no benefit. I also asked when I should take pulmozyme. He said the time of day didn't matter much to him, as long as I did it at some point during the day. In addition, I asked if I should leave some time between hypertonic saline and Pulmozyme. He said there was some in vitro data that suggested hypertonic saline might interact with pulmozyme, but there was no concrete evidence that this was necessary. Because I have the luxury, I am going to play around with when I take my Pulmozyme to see if it makes a difference for me.

I also asked if he thought my CF was asymptomatic. I asked this question because I recently requested my records from the CF clinic I attended until I was 22. I was surprised to read in the records that they considered me "completely asymptomatic"....despite my having repeated episodes of bronchitis, culturing Staph and H. Influenzae, and even having one bought of pneumonia that put me in ICU. My (current) CF doctor said that he did think I had symptoms of CF, but that my manifestations are primarily sinus related. The is good news to me, because hopefully it means that my lungs will still be in good shape by the time I am able to take the exciting new CF drugs.

And speaking of sinuses, he thought I had a sinus infection (after I told him I started having night sweats, feeling run down, coughing more, and having congestion after cedar season kicked in here in Austin...which was six weeks ago!) So he prescribed two weeks of Cipro. He also wants to talk to me ENT about putting me on an antibiotic that I could nebulize through my sinuses. Yay for more nebs! (said with sarcasm)

The other thing I asked about was Azithromycin and the study that showed it may increase the risk of culturing MAC. My doctor said that the CF Foundation is looking into that, but at current time, the proof is still questionable and he thinks the potential benefits outweigh the risks. So I'm going to keep taking it.

So that's pretty much all of it! My FEV1 was 115% - down 3% since last visit, but still 2% higher than it had been for the past two years. Hopefully the cipro will make me feel better!

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