Well, things have gone downhill rather quickly.

I took Rory to the ER on the evening of the 28th with more severe belly pain (just the surface, not deep). But it was extremely painful. His belly was beginning to become very hard in the lower left area. And it was getting red over the hard spots.

He was admitted, with a presumptive diagnosis of calciphylaxis. This is a dreaded and devastating complication of renal failure. The prevailing thought is the lousy dialysis over the last few months caused it (Thanks, guys). Calciphylaxis has a fatality rate of 50-80%. Not good. He was started on additional IV antibiotics, and morphine for pain control. We were hoping that this was an abscess (much easier to treat).

Within a few days, it became apparent that it was calciphylaxis. So, I did a fair amount of research, and found information I really didn't want to read. I saw what it could look like full-blown. And learned that the "accepted" treatment is essentially supportive. IV antibiotics to ward off infection, changing the dialysis, and increasing the amount of dialysis is how this is most often treated. Great. All I could envision was watching my husband die of this dreaded complication.

So, I did what I do with everything... I learned more and more about calciphylaxis, and then I discovered THERE IS A TREATMENT! But most nephrologists do not believe it works, since there has not been a large-scale study done (How can you, when only 1000 or so folk get it in the US each year?). But I found an article that was published right before Rory got sick that detailed the successful treatment of calciphylaxis in a woman with a drug, Sodium Thiosulfate. And I found anecdotal evidence of another 60 people who have been successfully treated with it. Getting a doctor to listen to me was another matter. Rory's nephrologist was so quick to say "NO!" that we were taken aback. She absolutely refused to believe that it would work. But, she did say that if we could find another doc to give it, no problem (Aha! A challenge!).

So, I began to work on the general medicine docs taking care of Rory's non-dialysis issues. And I found one who listened, who read what I provided him, and who I asked, "Why not try this if he is getting worse?". Thankfully, after a week of Rory getting worse, he decided to try the sodium thiosulfate. At least Rory would now stand a chance of improvement. And we weren't wanting to stop dialysis... that would be a death sentence for Rory anyway. We just wanted to do more thank essentially nothing but wait for it to keep getting worse, and have huge sores that would open up eventually, causing massive sepsis and death. Who wouldn't? And I would NEVER suggest something that there was no evidence for (His nephrologist actually accused me of practicing medicine. No... I was merely researching this problem to find out as much as I could about it. I wasn't actually giving him the med... geez!).

Rory started getting the sodium thiosulfate on Monday, June 7th, after dialysis, 3 times a week. No improvement noted that first week. He got another dose two days ago, with no improvement yesterday. BUT... TODAY HE IS PAIN FREE WHILE IN BED!!! And the tenderness in his abdomen is less! WOO HOO!!!! I hope it isn't just one day! I really truly hope that this keeps improving daily! He just got another dose while I have been writing this out. God, I hope this is actually getting better.