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When it rains, it pours..

August 30, 2017

 

 

<--    my throne, where i'll be spending the next few days. ;) 

 

This seems to be my pattern lately… I’m either feeling great or my body just falls apart all at once. I’m sure there is a correlation between my health issues all at once but it could also be my kind of luck. Who knows. Anyway, the last week I’ve been having bad back pain on and off that seemed all too familiar. I normally have upper back and neck issues daily from coughing constantly but this began as a dull achy back pain for the first two days, then began stabbing pain on my side… that's when I began to realize I’m in for a fun few days.  At least one of my kidney stones are dropping, fun.  I say at least one, because there is no way to know how many I’ll pass until they come out.

 

Here’s a little background info… about 2 years ago after going to a local urologist, I discovered that I had multiple kidney stones (about 10-15 in each side) and they are mostly quite large… usually too large to pass naturally without medication so I was given medication to dilate my urethra and relax my muscles so that they could pass. Still very painful, but it gets the job done. I also had lithotripsy on my right side to hopefully break them up and pass more. Unfortunately I was going to a local Doctor who has never dealt with CF and was not very familiar with any correlation between medications/stones or common types, etc.  At that point in my life, my lungs were also starting to take a dive and the kidney stones took a back seat to more important things like sinus surgery and getting evaluated for the double lung transplant so following passing the stones and lithotripsy, the issue wasn’t really focused on until they started acting up again this year. I have since began seeing a nephrologist at Columbia university, alongside the rest of my doctors and transplant center. He was recommended because of his familiarity with CF and has treated many patients with kidney stones. I had update scans earlier this year and we discussed the fact that I STILL have about 10-15 stones each, very large in size that are still in the kidneys but they shouldn’t cause pain unless they drop into the ureters (tubes draining urine).  He also believes they are calcium stones which are more common to CF patients, which makes sense because that type of stone is not broken up by lithotripsy rendering my procedure two years ago useless.  Unfortunately my doctor doesn’t feel a procedure undergoing anesthesia is worth the risk right now so for the time being we will analyze my urine and discuss options for medications to prevent further formation of stones.

 

So back to my current situation... I was trying to stay as active as I could over the past few days despite the feverish feelings and back pain because I know moving around and staying super hydrated usually helps me pass the stones quicker. Then of course I wake up in the middle of the night with another hemoptysis episode…. yes more blood!!  Only about 2 tablespoons this time but still bright red and alarming as usual.  Johnny sat half-awake with me while I chugged ice water, took another vitamin K and waiting for it to clot/slow down.  So yea... when it rains it pours! I still haven’t passed the stone either so I guess the “activity” thing just made me worse all around. I’m taking the next few days to try and keep my butt glued to the couch or at least in the house (possibly making some more candles ;), chugging water with lidocaine patches on my back in hopes of peeing out this stone with no more coughing up blood.  WISH ME LUCK!! :)

 

xoxo-Salty

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