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Running Update: No Hemoptysis

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…]

Air Travel and Hemoptysis

Photo credit: Mike Monteiro

My good friend (and also quite a bit older, so YAY for survivability) @UnknownCystic just wrote about his difficulties and fears of flying because of his history of hemoptysis. I wrote some about my hemoptysis a while back here and here, but there is more, and his post brought the memories rushing back. Please share your memories in the comments or on your own site, linking us all together  – I’ll add your post at the end of this if you let me know there is another story in our circle.

The wedding

My oldest traveling horror story goes back to when I was 22. My best friend through high school and college was getting married in Michigan (I know, a bad place to be in the first place, but I digress). I had other issues at the time, so I got a room separate from the block of rooms for the party, so I was already feeling like the outcast of the wedding party, but I dealt with it just the same as I always did back then: denial.

After a full weekend of dinners, festivities, and a wonderful wedding and reception, I went back to the hotel with everyone else so I could change out of my tux to have them return it to the rental place for me, as I was heading out very early in the morning. I was in the groomsmen’s bathroom with everyone, literally everyone else in the wedding party, in the room regaling and having a generally fantastic time, unlike me. I got into my hemoptysis coughing fit while I was still trying to take off my tux’s white shirt. Horror of horrors! I’ve successfully repressed any memories of getting any on the shirt, but I would not be surprised if I did. I was in there for at least 10 minutes, probably longer, while the others were waiting to change.

We all know how sound doesn’t stop at a hotel bathroom door, don’t we? They thought I was dying in there, but as long as I kept coughing, no one knocked to check on me. I eventually came out – beet red. I’d soiled 2 hotel wash clothes and tossed them and tried to wash the sink as well as I could while I was shaking from both fear and embarrassment.

[Read more…]

Hemoptysis: Bleeding Lungs

BloodIf any friends or family members don’t want to think about me bleeding from my lungs or what my cough is like from my perspective, come back for my next post… this one might be disturbing to you, but if you can stand it, it will give you a lot of insight into my past and present.

Still here? Good!

Hemoptysis is one of the words CFers hate. I’d rather be called a cuss word than a “hemoptysizer.” /shudder! It’s when your lung springs a vascular leak either due to an infection or when gunk that was previously in one spot eating away at your lining gets removed either from exercise or medication. It’s an indication of one of three things that I’m aware of as a non-pulmonologist with 12 years of medical training:

  • that something got dislodged over an infected site and you’re on the mend
  • that you have an infection that needs to be hit with meds
  • that you have an underlying pulmonary/vascular weak spot that needs to be plugged

My history of hemoptysis

[Read more…]

The Strangest Thing, Exercising Is

The strangest thing is happening because of my hardcore exercising now. Just to be clear, before March, if there was something physical to do to help someone, I had breathing problems or back pain. Both were true, but not truly keeping me from lifting a finger. Since being compliant, that has changed, but being labeled as “active” has not. Here’s what I look/sound like after our 4th session:

Two things happened after starting walk/runs:

  • I felt great!
  • I felt like crap!!

[Read more…]