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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!

Comments

  1. Anonymous says:

    I really like your blog. Very good posts! Please continue posting such awesome content.

  2. Breckgamel says:

    I think you’re rocking, dude! Keep up the great work! Improvement over decline is A BIG DEAL with this disease as CFers age. I’m quite impressed, if I may say so myself!

  3. You may say so yourself! /grin Thanks for the support.

  4. Wow! great news! And to be in and out in an hour? — sometimes when we went to clinic in Toledo we waited for 2 hours!!

    Praying that you’ll continue to see improvement with each visit.

  5. Dude, you ROCKED it!! You’ll only get better my man 🙂

  6. What a GREAT clinic visit. Nice to see the empirical numbers to coincide with the subjective experience you’ve been having.

  7. That’s the plan, fibro!

  8. Something tells me we didn’t get the first appointment of the day because there was a waiting room full of people. I am in and out of clinic before other people start showing up. No reason not to have, though – Toledo was as far of a drive time-wise as TGH is from here. Leave at 6, in at 7, out at 8, and home by 9.

  9. Until the sickerness of today. I’ll have to find time to post about that, but the clinic visit itself comes first.