From the Blog

Beware of Warning Signs

March 9, 2012

Warning signWelcome to Fatboy’s longest hospital stay in over 9 years. Prior to this week, my longest stay since I was in elementary school was a total stay of 3 days for hemoptysis back in 2000. Well, you know how I am about shattering my records, so I was going for broke on this one.

Symptoms started Friday afternoon. I thought it odd a couple of times during the day that I hadn’t gone to the bathroom, since I can’t go more than a meal without making room for new food, thanks to my small intestinal resection at birth. When it was closer to dinnertime, I came downstairs and Beautiful gave me a playful punch in the stomach. It hurt, but it shouldn’t have and definitely shouldn’t have been sticking out like that, either.

We got into the car a few minutes later and I had a moderate cramp as the garage door closed and we pulled away. Since we were headed out to her parents’ for dinner with a family friend, I (stupidly) went against my last-minute better judgement and sat down to beef roast, potatoes, and veggies. I have no one but myself to blame for not stepping up and saying, “You know, I think I’m teetering on the edge of a blockage now, so I think I’ll stay in the living room and try to stay active.”

I 100% guarantee you that I’m man enough to do that should an “obligation” like this present itself again. They know me. They know my limitations, and still love me just the same. No one would have been upset if I had done what I should have done. Lesson learned.

So, what happened? [Read more…]

Running Update: No Hemoptysis

February 29, 2012

Lone runnerLike anyone with CF who is “advanced in years” or “late-stage,” my biggest fear regarding running is hemoptysis. No one wants to feel that gurgle followed by an unknown period of red splatter (or worse). It happened the last time I took up running, so that thought is never far from me.

So far, I’ve slowly jogged one townhome building length. Then two lengths. For a week at a time before progressing. Saturday, I slowly ran 200yds and was really feeling it. Not so much my lungs as my heart. It was really pounding and I briefly wondered if it was possible for a 33yr old CFer to have a heart attack. I slowed my walk to a crawl until my pulse and respiration rate were under control again and then resumed a normal “mall rat” pace back home.

I did the same thing Monday, only I ran like a normal person that time. I made it about 2/3 as far as Saturday – only my heart wasn’t about to explode and I continued walking normally without a major slowdown. Monday afternoon was weightlifting (yes, my arms are really sore now) so I didn’t run yesterday. Instead, I took a very slow walk with my camera and took photos all along the way, 1.3 miles in all. We had to go out in the evening, but my car was in the driveway (we drive the Sorento together) so I drove it down to the parking spaces in the cul de sac two townhomes down.

Thinking we were behind schedule, I casually jogged back home and… I didn’t even cough! I think I’m going into this running thing the right way after all.

The hardest part

Maybe this is just me, but the hardest part for me is remembering my days in track and in PE in high school when we had to meet certain physical feats to pass or get a certain grade. [Read more…]

Don’t Measure Yourself by What You Can’t Do

February 26, 2012

MeasuringIt’s easy to think negative thoughts. It’s even easier when you’re in a rough patch – that’s when the negative can eat the positive for breakfast and leave you with nothing the rest of the day.

I can’t run a competitive 5k, 10k, half-marathon, or marathon like my friends who are getting in shape. For whatever reason, that really bothers me. As a kid, I used to love “field day” when we’d have track and field fun by grade and find the fastest and strongest in each category. I always wanted to be labeled “the fastest kid in the class” but I was too short and my stride wasn’t long enough.

Those races led to doing track in the 7th grade: the unfortunate year that I had excruciating growing pains in my knees. We saw the doctor and everything was normal. “Just run through the pain,” he said. I had to run a 1/4 mile every practice or race to get over the pain to be able to run free. That taught me a valuable lesson that I didn’t realize for many more years:

Life’s good things aren’t just going to be handed to me; I must be willing to go an extra [quarter] mile.

I’m starting to get into a drive for physical prowess for the first time in a decade. Starting my daily walks felt shameful to me. Walking! Anyone can walk; I want to run! Actually, I loathe running. [Read more…]

GERD Testing: Swallow Study and 24-hr pH Probe

February 23, 2012

GERD is one of the long-term, late stage-ish issues of cystic fibrosis. Gastroesophageal reflux disease (GERD) is so common with CFers because they eat so much, which stretches the stomach and churns up the stomach acid and because years of coughing loosens the sphincter at the bottom of the esophagus, which allows said acid to exit the stomach.

At my last clinic visit, Dr. Haddad explained that he wants to get an accurate reading of this disease because I am presenting mostly inflammation issues in my lungs now, which may suggest that it’s because I’m aspirating stomach acid into my airways. I’ve been taking Prilosec since the end of my major weight gain in 2010 when I was taking 3-4 Zantac 150s to keep up with my heartburn. I take it once per day in the morning now, but in talking with most of my other CF friends my age, if they haven’t had corrective surgery, they take it twice a day.

I mentioned surgery there, didn’t I? They correct GERD permanently with a procedure called Nissen fundoplication. They wrap the top part of the stomach around the bottom of the esophagus to reinforce the closing function of the sphincter. When GERD is a big enough of an issue in CFers who are still pre-transplant, they do a “fundo” and found that it can actually postpone transplant by eliminating the acid in the lungs. The primary purpose surrounding doing a fundo for transplant, though, is to keep the new lungs pristine, so I’m pretty much going to have this one way or another at some time or another since my heartburn is so bad.

[Read more…]

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