A mystery pain after getting lungs back to great functions.

Well, I just realized there were blogs here on the site and I've been active since 2011! Crazy.
In a nutshell, I'm a mom to 2 kids, a 17 year old girl named Lizzie and a 14 year old boy named Joe. I'm also a stepmom to 2 teenaged boys David, 17, and Ben, 14. They all go to the same schools and we have my kids almost the entire year (they go visit their dad for 4 weeks in the summer & 2 at Christmas) and my stepsons every other weekend and on Thursdays. It's a madhouse, but seems to work for us mostly. Joe has CF DDF508, and we are guessing Lizzie is a carrier, but won't know until she does testing down the road. Insurance won't cover it until she's ready for kids.

Joe just got home from 10 days in the hospital for a round of IV meds, Linesolid. He'd been in that too-sick-for-school but too-well-for-the-hospital limbo for a couple of months. Caught a virus, which quickly knocked him down to constant coughing, massive sinus infections & chest congestion. He was able to be released the night before our local Great Strides CF Walk, which was a big deal for him. Since we've been out for 2 weeks now, Joe's felt better than he has for over 3 years when the more frequent hospitalizations started. He averages a 2 week stay 2 times/year now. Joe's been flying high and I've had to MAKE him come inside and rest a bit each evening so he won't wear himself out. After months of him feeling crappy and laying about, this was a blessing. Joe's lung functions were at an all time high of 96% FEV1!

Last night Joe complained of a stabbing pain in his upper left lung. I thought it was a stitch, from too much activity or maybe a bit of allergies from all the cottonwood trees in bloom.... but it's not gotten better. It's so hard to see my kid feeling so great and then BAM back to lousy in bed within a few days. criminy. No real congestion, but brings him to tears to cough and he DOES have a big sound of crackly cough when he does. We've put in a call to the cf team, will wait to see if they want to check him out before we plan to leave town for the Memorial Day weekend. So much of my life is filling out forms, refilling medicines, getting appointments, working with my job to do things over lunch periods, evenings, etc. Sometimes I seem to be buried in the details of calls, appointments, emails, forms that I have to dig myself out to see the PEOPLE around me. Just one more thing to add to the list....one more thing....one more thing..... waiting on this one more thing and trying to be two places at once. So thankful for the last 2 weeks of good health and hopeful this one is a quick fix.


Welcome to the blogs Treasure
You write the story behind the statistics, filling in the sensory details....blogs can give feelings to so much of what is common for CF moms and dads....buried in the details.
Thank you!


New member
Hey there!
It's good to know your son is having some great FEV1's. Always nice when CF is involved.
Before I had my transplant, there were many times I had pain mostly in the upper lobes, but sometimes in the lower lobes as well. We finally figured out the problem: Pleurisy.
Maybe you could get that eliminated when you see the CF team next time.
I'm not trying to diagnose him, just sayin' I had plenty of pain from pleurisy & I don't think its uncommon in us CF'ers.
Best of luck getting a diagnosis. Better yet, how 'bout your CF team fixes the problem! That would be too kool.
Hope this helps. 'Pat'