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Clinic – Fall 2012

I just got back from clinic and had another great visit. Basically, my numbers are up, so if you’re a busy person and that is all you need to know, move along with your day. I wish I could, but the rest of you want details, right? Right?!

The big number: FEV1: 42% – yes, my favorite number. Those of you with better memories than me will know that’s also what I blew in March before we started doing foster care and after I’d started doing daily walks and runs. Then I blew a 38% in June after a full 7 weeks of fostering. I was wiped and had come off a cold. I’m still recovering from the life change of Grandpa’s funeral, the 2,000-mile drive, and lots of hours worked to afford to take that time off… and the cold Boy gave us again.


Other stats of note: my weight was a whopping 126.4lbs – up from 123 in June and several dips into the teens since then – and my gut was proudly rounding over my pants. My O2 was 96%, which is the minimum I’m satisfied with.

Three neat stats from my PFTs are:

  • My FEV1 volume is higher than in recorded history at 1.53L
  • My small airways (25%-75%) are higher than ever in percentage and volume: 0.69L, 17% (13% is my norm).
  • My PEFR (peak expiratory flow rate – or “how fast can you blow, like peak acceleration in a car”) is also higher than ever in both percentage and volume: 5.98L/s, 70%.

Before I got out of there, I got my requested flu shot, tetanus vaccine, and pneumonia vaccine. I expect to feel like crap any hour now, so I’m going to finish up a small project, get my pay “for the day,” and rest while Boy takes a nap.

Turning Back the Clock

Turning back the clockYesterday was my hospitalization follow-up from my blockage at the beginning of March. We’ve been really looking forward to it to see how much impact Spiriva and my exercising has made on my PFTs.

If you’ve been following some of my posts on Facebook, I’ve walked and ran 60.9 miles in 60 days. I started by just walking 1/2 mile. Then I upped it to 1 mile and soon added running 100′ or so for a week. Then I upped to 200′ for a week. I’m now able to run (a good 8-minute mile pace) for 1/4 mile and several shorter jogs on my 1.5 mile route. Some days are just for walking and taking photos at an easy pace, just to get out and clear my mind.

I love my new routine, but how much does it like me?

I was really pumped to get my PFT results, so we made our guesses ahead of time. I said I felt like a 46% and Beautiful said 40%. She was saving 42% for me because those who know me know I’m a Hitchhiker’s Guide to the Galaxy fan, so 42 is my favorite number, so she changed her guess to 42% when I didn’t claim it.

I took my first blow somewhat relaxed so I didn’t tighten up and constrict my flow.

39% – my number twice in 2011 and my second to last result. Not bad, up from 35%.

Then I decided to give it a huge effort and blow as hard as I could.


For my last blow, I concentrated on keeping everything wide and open [Read more…]

Quarterly CF Clinic – Going for Bust

My CF Center: TGHMy quarterly CF Clinic day has arrived at last! This will either be a multi-post day or I’ll be updating this after clinic. Most likely the latter, but who knows? It’s been quite the 3 month wait this time. Let’s recap some historical data and my recent changes in my regimen.

I was 119lbs in June and blew a 36%. I got a monster stay-at-home blockage that turned my stomach into a small prune and messed with both my appetite and body for weeks. I’ve started on twice-daily Dulcolax and if I don’t take it, I get a thromboid external hemorrhoid, which is getting excised today at my PCP (poor guy – poor, poor me!). We’ve upped my Zenpep from 5-7 with meals to 8-10 with meals. I even try to take 5 with my Boost Plus. The last week has been pretty good, so I think that was a good move. I’ve been hovering around 130lbs since the blockage, but have hit 125 in the mornings before. I hope today is not one of those days after my hard-earned 135lbs.

My goals for this clinic:

  • weigh in at or over 130lbs
  • blow a 38%+ FEV1 (I’d love if it was a 42%)
  • have them tell me about a few odd symptoms I’m experiencing

We leave for clinic in about 90 minutes, so I’ve moved up all of my meds an bit since I’m usually getting up at 5:30 or 6:00. Everything is running in high-efficiency, multi-tasking mode now. I’m holding my colistin nasal neb and typing one-handed now. I’ll keep you posted.

Post-clinic Update

We were in and out of clinic in an hour, which included a business meeting with the doctors about the website I’m working on for them. My O2 sats were 97%, which was really disappointing after it started out at 100% for the first 5 seconds as my heart skipped several beats with shock. PFTs first:

Date Weight FVC FVC % FEV1 FEV1 %
8/20/10 132.3 2.58 60% 1.37 37%
5/14/10 116.6 2.49 58% 1.32 36%
3/19/10 119.1 2.24 52% 1.24 34%
2/19/10 114.4 2.1 49% 0.98 27%

Improvement instead of decline is always good news. For as tight as I feel today, I am sure it would be higher in the afternoon. My peak flow plummeted from 68% to 49%, so I’m definitely tight, eh?

I’ve been complaining about sore nipples – weird, huh? He looked it up and confirmed that it was my testosterone levels and wanted to do a blood draw today since I haven’t done my weekly shot yet to see what my levels are now. He said that what happens at lower weights is that the reproductive system shuts down (I’ve read that CFer women can’t get pregnant when they have too low of a BMI because their cycle stops) and now that I’m at a healthy weight he is suspecting that my levels have risen. Beautiful has been complaining that I’m constantly short with her so maybe I’m raging every day like a bull shark. Look out, don’t get bitten!

Great Clinic Visit

Well, folks, Beautiful was right. Again. She always is, so remember that, fair peoples of the world. I told her that I was feeling junky and concerned that I needed to get on IVs before vacation in June, so I moved up clinic to today. I was wheezy, but was hoping it was due to being an off month for my wonder aerosol. I started back on it yesterday and have had 4 doses so far – the wheezing has stopped.

Here is where it gets amazing: my PFTs were better than they have been for quite a while. Aside from results when I was on a study, it was the best since 2008. Here’s what is going on:

Date Weight FVC FVC % FEV1 FEV1 %
2/19/10 114.4 2.1 49% 0.98 27%
3/19/10 119.1 2.24 52% 1.24 34%
5/14/10 116.6 2.49 58% 1.32 36%

I got to see the head doctor today, which only happens about once per year, so that was a treat. He didn’t rush out either, because he chewed the fat about my graduation and work, and then moved on to talking about re-doing his medical site and forum for patients. I think it will move quickly, so I’ll be posting those as completed projects when they’re done.

This Saturday is the Tampa Great Strides walk, so I’ll be seeing my coordinator 3 times this week, since she’s on my walk team, too.

So the moral of the story is this: Beautiful’s ability to predict my health not only includes my being sick, but my wellness, also. If you ever want to know how I really am, ask her, not me. I clearly don’t have a clue.