CF Appointment

Well, my quarterly appointment has come and gone, leaving me happy to report good news!  I'm down a few pounds (woohoo) thanks to my new workout routine and the lungs are doing good.  My FVC was 100% and FEV1 was 90% - I had done a round of Cayston about an hour before the test.  And thankfully, Friday was the last day of my 4 weeks on Cayston...so I had a happy day!

I told the doc about my chest tightening which occurred again on our West Virginia camping trip.  It felt like an elephant was sitting on my chest and I could not take a deep breath (kind of freaks you out a bit).  But, it went away.  It only happened one other time (this past February) and we couldn't find any common denominators between the two occurrences.  So, now that Cayston is off, I'm going to go back for some more lung functions on the 20th to see if they can see anything different.  I'll let you know how it goes!

 Also, I'm going to be participating in a clinical trial about arterial health in lung disease.  I'm pretty excited to get to do some kind of trial - I don't mind being a guinea pig :)  My first session is tomorrow, so I'll share all the nitty gritty details after my appointment.

That's pretty much all I know for now...have a great rest of the week!

Comments

  1. Glad your appointment went well. Awesome numbers! Keep us posted on the trial. Wishing you continued good health. :)

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  2. Wow! You have some really great PFT's :) Keep up the good work. As far as the chest tightening...I am curious do you use HTS? I have been on HTS for about a month and I feel complete different from a month ago!

    I have been following your blog for sometime now and I have decided to start one of my own. Check it out if you get a chance!

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  3. Thanks for reading John! I checked our your blog and look forward to keeping up with you - glad you decided to start one. No, I don't use HTS. Have you experienced chest tightening before too?

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  4. The reason I ask this is bc I have recently started using HTS and love this. I never thought I was a real mucusy person but once I started HTS for the first two weeks a bunch of junk was coming up. I hardly ever cough at all anymore. My breathing has seemed to improve so much I just feel better overall using it.
    I did have some chest tightness before using this and have yet to experience it since I have started HTS. I highly suggest giving it a try for a month. I use it while I vest in the morning and thats it. I am just a really big fan of this now and wish I had started this years ago when it came out.

    I have used pulmozyme before and I didn't like it. To me it made my mucus so much thinner and harder to get out.

    Thanks for stopping by my blog as well. I plan to update it with my CF diagnosis soon!!!

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