Urine for a CF Anti-Treat…

So I have had a busy few weeks lately!  The Friday before my last blog post I went to walk in care for what was diagnosed as a basic bladder infection.  What was strange (apologies for the upcoming TMI) was that I wasn’t experiencing any of the typical symptoms I tend to get.  I wasn’t having any pain or anything of that kind, but I was more than a little concerned by the atypical color of my urine (think iced tea- YIKES!), and occasional kidney aches.  After a swift kick in the butt by my mother, I realized waiting until Monday to call the doc was probably not the best decision I could make.  Turned out that the local walk in center was 30 minutes from closing so I jumped into the car and I’m sure made the day for the nurses and desk clerk who, due to the previously empty waiting room, were likely expecting to close early.  After making them all the more excited about my presence when I struggled to pee on command, and having the capped cup accidentally thrown at me (thankfully it didn’t spill), I was prescribed a standard 7 day antibiotic for a bladder infection.  

Fast forward to two weeks and one more antibiotic later, peeing was painful and the kidney aches had gotten worse.  After looking through the information from my samples at all 3 visits, the doctor suggested that I might actually have a kidney stone- AWESOME.  Between traces of blood, lack of bacteria, and kidney pain, it made sense.   I’m fairly certain that I have had very small stones in the past, but I never knew for sure.  I was glad to have a possible explanation for the ineffectiveness of the antibiotics, but I was terrified of having kidney stones.  I’ve seen people go through that and I knew it wouldn’t be a walk in the park- even if during said walk you kept falling and smashing your face on the pavement.  She sent me home with a pee sieve and told me to wait for a call about scheduling a CT scan of my kidneys and bladder.  

The next morning, while I was doing my airway clearance, I started experiencing that same peeing pain, even though I was just sitting on the couch (and not peeing on it).  Luckily, I finished my treatment shortly thereafter and headed to the bathroom.  Now, I have experienced some serious physical pain in my life.  I’ve broken a leg, collarbone, and some toes, and have been hospitalized for a bowel obstruction.  My left butt cheek has felt the full clamping power of an angry German Sheppard’s jaw, I’ve fallen out of trees, up and down stairs, and even been hit by a car.  What can I say?  I was a curious and not very cautious kid.  But STILL, the pain that I felt when I tried passing that stone was ranked right up there at the top of the list.  And when I say I “tried,” I mean I TRIED. UNSUCCESSFULLY.  After panicking and crying, I called the doctor again to find out what to do- IF there was anything I could do.  She brought me back into the office, gave me a script for bladder pain, and sent me out for the CT scan.  I stopped back at my house to give it another shot and passed it immediately.  After everything, my doc suspected that the stone was actually lodged and chilling out in my urethra between my two “sittings.”  The scan showed that I didn’t have any more stones, so for the time being, it’s over.  It turns out that CF puts us at a greater risk for kidney stones, potentially due to malnutrition, so there’s another joy to add to the CF-Fun-Time list.  But hey, it gives me a funny story to share!

In other news, I am pleased to say that I have been blowing my treatments out of the water lately!  I just bought a baby bottle sterilizer for my neb cups and have been using it for a few days now.  I also told myself I was going to stop making excuses for avoiding airway clearance, buck up, and do my job.  We want to have kids sometime in the near-ish future, and I want to be able to spend as many years with my family as possible.  The best thing I can do to make that happen is to take responsibility for my health.  For about 3 weeks now, I have not skipped using my vest once!  I don’t think I’ve ever been able to say that before.  I also took some time to figure out how other CFers do their treatments and tried a few of them myself, to see what will maximize my treatment time. 

I’ve settled on a way that I think works great for me:  I do 2 puffs of my Xopenex inhaler (this is a broncho-dilator and it helps open up my airways so I can get as much in and out as possible), wait a few minutes for it to really open me up, and then I do my saline neb.  I just started holding it in for one or two seconds before breathing it out (something I read on CysticLife and what I feel has made the biggest difference for me), to really let it do its job.  I follow that up with Pulmozyme and then use my vest after I’m done with those.  After all that, I do my Cayston/TOBI, and my lungs feel so much cleaner.  I can’t TELL you how much more effective it is- I almost feel silly for not doing it this way before!  It takes so little effort to get junk out, it’s almost like it’s jumping to get out of my lungs, which for me, is HUGE.  I’ve never found it easy to cough up mucus- a big reason I wasn’t a fan of airway clearance.  If you don’t have CF, I don’t even know how to describe the difference, but it’s amazing.  

Tomorrow, I have my first clinic appointment since I’ve started this new plan.  I’m SOO excited to see if it’s made a difference in my PFTs.  However, I have prepared myself for the possibility that it hasn’t.  I think I’ve been fighting a bug recently and that can certainly make a difference.  But either way, I FEEL so much better, whether my PFTs reflect that or not.  I won’t let a lack of an increase reverse all these great changes I’ve made.  Wish me luck!