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Be Compliant… or Else!

Fatboy - new shirtIt’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.

I want the responsibility. I want the challenge.

My daily treatments have taken a definite backseat to getting work done since February. I think February in general, each year, stinks, because it did last year, too. March rocked, and April has started to now that I’m working more uninterrupted this week.

It’s just been this lingering misery breathing. With a HUGE conference coming up on the 28th, time was drawing close to get IVs and be done before I leave, so I asked to be put on IVs and get healthy again. But, since I’m resistant to so many meds, he pretty much refused unless I whipped myself back into doing things right again. We went over my culture and said that colistin and Cayston are working because I only grew out “light” growth.

“Why do I feel SO miserable and short of breath, then?” He pulled his knee up in his cupped hands, smiled big, and said, “You’re working too hard. You need a vacation.” In his opinion, I need to stick to my treatments and figure out how to be sure I get some down time.

Last chances

I only have a few more chances with being sick before they run out of options. If I go down and my normal IVs don’t work, they will put me on a fast-track for transplant, which thankfully come quite quick in our area. Here’s the catch: I’d be out of work for at least a month. With my line of work: sitting on my butt, thinking and typing, and occasional Skype calls, I don’t have to be too well to work. We know that there are a ton of physical therapy visits, time off to exercise on my own, times that I’ll be too out of it from meds to work, and clinic/bronch days will be a complete waste. We don’t have the savings necessary to weather that yet, so I need to stay healthy.

I’ve been doing all of my treatments since Friday night. Even with my Trio and Altera treatments, waking up at 8am gets me up to the office working around 11am! I’ve decided to take the mornings off to watch TV, my iPhone Netflix or computer tutorials on during my Vest and sinus nebs, and take it easy until lunch. That gives me 4-6 solid hours to get some money flowing before calling it a day… and calling it a day for real when we break for dinner.

I feel better already. Beautiful said I barely coughed last night and that our drives home from town usually result in a few spazzes and running out of breath from talking, but she couldn’t help notice that I didn’t do that yesterday.

So… be compliant!


  1. Yay for being back to 100% compliance!

  2. You take care of my son! OK? ūüėČ Glad the better compliance is showing results so quickly.

  3. Keep it up man!!

  4. C Artprocess says

    It is amazing how¬†some peaceful sleep can do wonders for the body/ immune system. I once knew of a pulmonologist in Tampa that would shoot it straight from the hip-¬†I always enjoyed how he would¬† ‘Mark’¬†¬† all over my patient survey forms with what appeared to be fierce novels of encrypted notation, only to look me in the eyes as he scratched his bald scalp¬†to say it¬†like it was.Period.¬† I¬†especially appreciated how he¬†skipped the jargin¬†translation¬†to¬† laymen lecture, blah-blah, and figuratively smacked me in the face with “…What were you thinking!¬†..pause..Duh!”¬†¬†Permit me to state¬†that I¬†am one of those patients¬†who¬†reflects upon the blunt¬†‘say it like it is’ session¬†as a eye opening jolt of rational perspective. So long as I am eventually given the laymen blah,blah to explain what went wrong and what will¬†get me back on track (which usually comes from a mild mannered cf coordinator.)¬† I now feel compelled to give a virtual¬†shout out¬†to¬†Wanda and Melanie!¬†¬†
    It is good to hear that you are maintaining a very positive outlook, Jesse. Your blog is truely a Positive. I am also a thirty-something CF’er trying to live my life with my wife and kids. Determined to live a quality life, so take in that painful breath and…Live It!¬†¬†
    I really like the vibe of this blog  -chris

    • Thanks, so, since you’re “right on the Mark,” when did you move away? Things
      have really changed. We finally have a place CFers can call home and go to
      every time now. It’s almost swank if they hadn’t just taken away our free
      valet parking.

      • C Artprocess says

        I was one of those¬†“elderly” CF’ers that fled in the 2007/8 Exodus, when the Tampa program was short of on-call CF doctors and a CF Coordinator (pre-Sue).¬† I was at a critical point in my life that required certain health services- so I moved. Glad to hear the program is back on track.

        • Yeah, pre-Sue was rough. I was non-compliant for a number of reasons – one
          of them being that access to the staff was more… difficult. We got married
          in late ’06 and Beautiful really noticed a difference when Sue came on.
          Being able to e-mail or call someone and have them on the other end when you
          call is a wonderful place to be as s CFer.

          Hope all is well where you are now – I wouldn’t mind hearing on my contact
          form if you don’t mind telling. The weather here (allergies and humidity)
          isn’t always the best, so I like to keep an eye on other CF center markets.
          I can tell you where I *don’t* want to live. ūüėČ