clinic — Page 2

Tight, Tight, Tight, But Not Sick

June 10, 2011

Today 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.

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Still Compliant, Still Gaining Weight

May 21, 2011

As quite a few of you on Twitter and Facebook are aware, I had another intestinal scare on Thursday. You see, Beautiful wrote about enzymes on Wednesday and every time she or I write about anything to do with blockages, something happens. Without fail. It’s really quite creepy and must stop this time. I’ll get to my lungs and weight soon, but first, it’s story time.

Thursday morning

I woke up feeling out of sorts and shrugged her off and indicated that I wasn’t feeling well when she came to wake me up on Thursday. I got up around 8:30 and started my treatments, but was feeling sore and crampy, only it wasn’t in the usual blockage area indicated from my long history of blockages. Like a seasoned veteran, I weighed the pros and cons of having an omelet for breakfast and just went for it with plenty of enzymes.

I got upstairs to start work around 10:00 and was more or less completely unable to concentrate. The cramps were coming in waves and in harder and harder force, but I can tell the difference between a resistance cramp and an uncomfortable cramp. These were the latter, no nasty, tight ball of crap anywhere to be found by exploratory pushing of my squishies. Sore, yes, but I didn’t have the tell-tale knot of disaster. Beautiful went back downstairs seeing my clear distress and got me a 20oz Gatorade and an extra Dulcolax to hydrate and flush anything that was in there.

Thursday afternoon

I was feeling better by dinnertime and insisted on eating despite Beautiful’s firm reminder that I “felt fine” before our Outback dinner for my birthday 2 years ago. [Read more…]

Be Compliant… or Else!

April 19, 2011

It’s sad to say, but I’m talking to/about myself with this one. I’ve been writing a post for 4 days now, but I’m in a completely different state of mind now, so I’ll post it later as a reflective piece. Today, I’m kicking butt and taking names again, but Friday wasn’t so much of the same.

I went for an unscheduled clinic visit Friday because Tuesday was a day of misery. I was wheezing and whistling. Each breath was labored. I was coughing up junk with each cough and I was having dozens of spazzes every day. The only things not happening were bleeding or fever.

I was down almost 10 lbs since Feb. 18th, but I blew the same PFTs: 35%. It didn’t make sense how I could feel this bad and still have 97% O2 sats while constantly being out of breath. 97%!! I don’t have that when I feel like a friggin’ ox!

The doctor came in and took a look at my numbers and what I wasn’t doing every day came from Sue… and me. He asked, “Why?”

Chronic entrepreneur

I’ve been under a lot of stress making sure we have enough money to pay our bills each month now that Beautiful stays home. The amount our budget has gone up since I worked in the office is profound, and now we’ve subtracted her income from the mix. It sure makes budgeting easier to just say, “This is how much you need to earn this month,” but I feel the physical effects of the stress in my lungs.

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Annual CF Clinic Visit 2010

November 12, 2010

Today was my annual clinic visit. Not the dreaded annual, but it was not my favorite day, until just about half an hour ago when I found joy despite the bad or discouraging things of the day. I have to preface this with acknowledgment that Sue (my coordinator) told me that I wasn’t allowed to blog about today while I was still sad or upset about the visit. Now that I’ve found my joy, I’ll start writing – you know I’ll still be transparent with you about all of my ups and downs, though. Just know that I still will go to bed a very happy man despite CF and despite some things that made me feel less of myself.

What the annual involves

At the Tampa CF Center at TGH, the annual visit includes a full blood workup, urinalysis, sputum, PFT, doctor consult, dietician, social worker, and chest x-rays. They drew 9 vials of blood in the time it takes me to donate a pint – a hilarious 2 minutes to me. Next is the standard PFT that I showed from my last clinic visit. Then I went to radiology in the main hospital for my x-rays and hoofed it back as soon as I could (about 20 minutes later) for what is usually the doctor. He was running late because they were a doctor down and I got the impression that there was a recent transplant that he was attending to. I got to see the social worker before the doctor, but then it was him (head of pulmonolgy), the dietician, a surprise test, and then a second consult, and off to my next thing. I got there a tad before 7am and was out at 11am, but I’m usually out by 8:30 when both doctors are there and it’s not an annual.

Not a happy camper

My day pretty much started out bad with my PFT results. [Read more…]