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Tight, Tight, Tight, But Not Sick

TGHToday I went in for an unscheduled clinic visit because I’ve been having seriously labored breathing.

There have been precious few times that I’ve actually been scared for my mortality because of my breathing (thinking about mortality and having physical feelings are so different). This week was one of them, as I’d climb into bed with my CPAP on, lay down on my side, and actually struggle for breath for a couple of very long minutes. I imagined that I looked like a fish out of water, gasping. My lungs hurt, or at least my ribs did, but it felt like my lungs.

I’ve also had episodes of a stabbing pain in my lower right ribcage, similar to a running stitch in the side about every other time I do my Vest. I have just had a general feeling that my lungs aren’t supple enough to expand or contract any more and that I’m wearing a very tight belt around my chest most of the time. Oh, yeah, and the whole blacking out episode – it’s all making me feel pretty nervous about where my health is at this point.

So, after doing PFTs, Bill said that my volume was up 10mL from last time, so even though I’d gained quite a bit of weight since my last visit, my FEV1 was up 1% to 35% now. What the heck?! I’m not saying that I’m not happy to have better PFTs, but I feel like they are going to think I’m crying wolf soon. I feel terrible, yet I’m still healthy.

In fact, my PFTs have been within a 5% band for about 2 years now. I’m not going up, but Bill is still pretty pleased that I’m not going down because he said almost every CFer’s trend line slopes down on the 2 year view. Mine is flat with a little bump up and a little bump down. Dr. Haddad didn’t feel comfortable putting me on IVs because I’m not experiencing an exacerbation and I “have bugs from hell” that they don’t want to hit with any anti-biotics that they need to use when I am in trouble, lest they not work and we are put in an emergency transplant situation because the infection won’t go away any other way than removing the lungs from my body.

I don’t want to be in that situation, so I’ll do my best to keep what I’ve got.

So, what am I going to do now?

Last time, they said I was too stressed and needed to take a vacation. I took a vacation. Now they concluded that I’m out of shape.

We got a Wii for a reason, so now we’re going to use it, because I’m sure not going out in this heat and humidity to walk or run. I haven’t been doing much of anything besides going up and down our stairs about 5x per day. I’m pretty much confined to our living area most days because I get up, do my treatments, eat breakfast, work, eat lunch, work, eat dinner, do my treatments, watch TV with Beautiful, work/play, and go to bed. We walked a lot in SoCal and I was getting winded just walking 1/2 mile at a time, so that’s pretty bad.


  1. Come on my man, you’ve got to MOVE!! Walking up and down your stairs 5 times doesn’t count for a young lad like you!

    • Yeah, I’m going to be doing some Wii Fit skateboarding, marching band, and
      yoga. I love yoga, but I suck at it because I’m so stiff. My golfer back is
      long gone. Time to get it back.

      We just had a really scarce couple of months of business, so once things
      level out with the fresh income we should be able to resume our outings and
      take breaks during the day so our evenings can remain the same. Why be in
      business for yourself if you don’t set your own schedule to take care?

  2. Hey!  Well… i guess its good news that you aren’t getting IVs, but I know its discouraging when your numbers don’t go up despite your best efforts.  I know its very hard to be motivated to move around and get good quality exercise.  I go to the gym 2-3 times a week and I try to do walks in the evening after the sun goes down (otherwise I’ll die of sunburn).  Have you thought about work out videos?

    • Beautiful wants me to try her Pilates that she watches, but I would rather do Wii Fit yoga.

      Thanks for being an encourager.

      BTW, pls mssg me what Mike did to be awesome.

  3. Jesse,
    Can’t encourage you enough to keep up your discipline and start working some longer walks into your routine.  When I was your age and I think younger (due to the tightness, etc., like you are suffering) I started sleeping more upright.  It allows our hard pressed lungs to more freely expand and also seems to help the diaphram relax a bit.  It helped me and even though I miss sleeping laying on my side I have had few problems as a result and still have pretty good lung functions especiallly for my age.   I am no doctor but another thing that could give your lungs a break would be to take a week or so off from the saline.  I remember when I used it I always had quite a bit of extra tightness and irritation.   Good luck and keep doing well! 
    55, 165lbs, and very, very, grateful!

    • Check out Beautiful’s blog for some details that I didn’t cover. For whatever reason, my body rejects sitting up all night, even in a chair. The only way it happens is a hospital bed with side pillows. 😉 I always try after sinus surgery, but usually wake up w/ my butt in one corner and my head flat on an armrest – and a sore neck! LOL!

  4. I hope you feel better soon. 

  5. I had an almost identical experience this week – I went for my post-IV visit, but have been really tight and junky for the last several days, with intermittent chest pain in 2 really specific spots; I expected my PFTs to be down at least a little – instead, I blew a 70% for the first time since 2004, and before that, 2000! So I was thrilled, but really confused. 

    I really do think that just adjusting to the “instant summer” heat and humidity, in addition to it’s daily warning-worthy ozone levels has something to do with it, but I also think the sinus issues I have brewing are the major culprit – my cough and general symptoms are always different when crappy sinuses are leading the show, as was confirmed at my ENT appt later that day.

    I don’t really know what my point here is, other than I totally get the “Yay? ish?” mixed bag of higher/good PFTs when you actually feel worse, and feeling like they must be thinking you’re wimpy or dramatic or whatever if you’re complaining despite high numbers, ha. Hang in there! (and try your best to lay off sugar and refined carbs, if you can/care to try it; I’ve found they make inflammation much worse, and avoiding them makes me FEEL considerably better overall – joints included – even when my numbers aren’t where they should be). Hope you *feel* better soon!