Well, it has been a while since my last post. Things have not been going well for Rory. His dialysis access (a permcath in his chest) has been failing, and he has been slowly getting sicker and sicker, even while being dialyzed 5 days a week, for 4 hours a day. Last Thursday, they replaced the catheter, but it has not been working at all (well, 15 minutes total isn't really working), it leaks blood around the exit site (where it comes out of his skin), partially worked its way out about 2 inches, and hurts like hell. I ended up taking him to the E.R. We had to get a doctor to give him morphine in the E.R. on Friday, due to the pain. The vascular surgeon on call thinks Rory has a hematoma (a collection of blood) between the skin and the vein that the catheter is threaded into, and that is what is slowly leaking. They also stitched it to his skin, so it won't come out any further. The doctor also wrote him a script for dilaudid, which is basically oral morphine. Home we went...

This morning, he went to dialysis again, and it worked for a few minutes, then the alarms went off (high venous pressures), and kept going off. So, they tried using TPA to declot it (clotting wasn't the problem, but the nephrologist decided that it should be tried anyway). Of course, it didn't work. So, they took him off dialysis. Total dialysis time: 30 minutes, with .5 L fluid removed. Oh, and added MORE TPA to his catheter. His potassium level is high (It was 6.0 Friday night, we assume it is higher today since he ate food Friday night and Saturday morning), so now he is taking SPS (Sodium Polystyrene) to try and lower the potassium levels. Too high, and the heart stops working... not good. And no dialysis tomorrow, since the center is closed. He is supposed to get dialyzed on Monday, but with it not working, it is doubtful that it will work. And since this is a holiday weekend, the vascular surgeon needed to fix this problem is on vacation (Hey, I can't blame him for having a private life, but damnit! This is my husband!), and won't be back until Tuesday. I just hope Rory does ok until then. He continues to bleed slowly from the exit site. Not a lot, but constant.

Now, the shitty part: This may be Rory's last accessible area for a long term dialysis access. No access, no dialysis. No dialysis, death. And no guarantee he will be transplanted. You see, unlike other organs, kidney transplants aren't done just because someone can't be dialyzed. Isn't that shitty.