CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Good day yesterday. Input and output are better than the previous day, my BP today is lower (but not too low), no fever, and my weight is down another pound (that’s good). My appetite picked up a little, and I managed to get more phosphorous in yesterday via some nuts, milk, PB and J on whole wheat (peanuts and wheat have a lot of phosphorous), a protein bar (contains 20% phosphorous), some chocolate, and the cheese in the lasagna we had for dinner.

I did have diarrhea again last night; it happened 12 hours after my magnesium, yet I skipped my mag dose the night before, and no diarrhea in the morning. I’m convinced that is what is causing it. So, I only took 1 magnesium last night along with Imodium (which is an approved drug for me). So far, no diarrhea this morning.

I did have to take Tylenol #3 during the night. I got up to go to the bathroom, and my elbow and hand were very painful. I tried to get back to sleep, but the pain was just too distracting, so I broke down and took it. I was finally able to get back to sleep. Initially, the pain was a numbness/tingling/buring in my 4th and 5th fingers (suggesting an Ulnar nerve problem), and then went to my other fingers and the palm of my hand. It isn’t occurring on a regular basis, so I’m still not worried about it.

My father-in-law was blown away at the retail cost of my Valcyte ($4610 for a three month supply). However, I get an “employee discount”, so that cost is deceiving. Were I to get it from drugstore.com, 3 months of Valcyte would cost $6462.68! BTW, if you want to know what a drug costs, I usually go to drugstore.com  and search for the drug. It’s a ballpark figure, but it gives you some idea of what a drug will cost. Also, on some items, it’s cheaper to pay cash there instead of going through your insurance. For example, it was much cheaper to buy a year’s worth of fluoride there, than put it through the insurance (I can’t remember the numbers, as Kevin is no longer on it). My Vitamin B-12 injections (I’m on that from having the Gastric Bypass) cost about $15 dollars for the year (12 vials). At a local pharmacy, they are $5 a vial.

I have lab work today at 10am. I won’t know what my labs are until tomorrow. I’ll check later to see if Monday’s labs are available online (they aren’t available until the doctor “dones” them; he usually isn’t very prompt with that, but at least I know the important levels).