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A Heart That Has Been Touched and a Life Changed

A Life ChangedI got a personal e-mail today that touched my heart like none that I can remember. Maybe there have been others in the past related to something I’d been going through or something that I had recently accomplished at the time. This one was different. Since I’ve not asked permission to reproduce it, I will leave the person anonymous and edit it for the heart of the matter. I want to get my feelings out in pixels before they fade away into sleepy oblivion.

I was diagnosed fairly late in life (around 20) and have had my ups and downs since then. Most of my struggles have been with gaining weight and keeping a good fitness routine. My baseline weight was around 105, and I’ve dipped up and down around that number for years now.

A little over two week ago at a clinic visit, my weight was 99.7 pounds, and FEV is 42% with basically no daily exercise. I decided “enough was enough” and committed myself to a regimen that included gaining lots of weight and getting in shape. Your site was actually one of the first I found that helped get me in the mindset that I could do this.

Over the past 13 days, I’ve gained 10 pounds back and have hit the gym (both cardio and weight training). I’ve been posting on CysticLife and other sites, and many people have recommended I try to get in contact with you personally…

Mindblow! He’s, like, my brother or something. Do those weights sound familiar? How about that “enough is enough” attitude? I felt like I was reading a mirror of my thoughts back in March when I had my epiphany. [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.

Clinic Update, from the Bowels of TGH

I’m still in clinic waiting to see the dietician (for obvious reasons regarding the site), even though I’m not scheduled to see her. Let’s take a look at who wins the FEV1 guessing game, shall we?

The guesses were:

Beautiful: 34% FEV1 %
Fatboy: 38% FEV1 %, 120lbs, 98% O2 sat
Unknown CFer: 36% FEV1 %,

[Read more…]