Rory is feeling crappier and crappier, since his catheter isn't working very well and it is infected. He felt so bad on Monday, that I took him to the ER. CBC, Lytes were OK, but his BUN was 46 post-dialysis (high, not good). Creatnine was also high (again, not good). They added Cipro oral (antibiotic) to the Kefzol IV (antibiotic) he is getting at dialysis. I sure hope it works.

OK... Rory had the aortogram. The interventional radiologist who did it told me that Rory's right side iliac artery and vein looked really good, and that the left looked good, but there was some disease on the left iliac/femoral. When the dictation is done, I will take a look at the report myself.

I also just got a call from his dialysis coordinator, who is trying to stay on top of things for me (Thank you Lisa!!!), and keep me from going insane. She told me that Rory's nephrologist was told by the UCSF Urology folk that they will do the repair on Rory's urethra at the same time as his transplant, since "It isn't anything major... just a 5 minute procedure" (Now, didn't I say something like that before???). The only thing that bugs me about this is that this is in direct contrast to what we were told out there on April 13th.

What this means... THERE IS NOTHING TO STAND IN RORY'S WAY FOR A TRANSPLANT! (Except of course for UCSF to activate and tray list him... Please guys!!! His access is REALLY STARTING TO FAIL).

Well, where should I start? Rory and I went to UCSF to see the urologist and also the transplant folk. The transplant appointment went better than we thought, although they still want an aortogram done (an angiogram of the aorta, iliac, and femoral arteries and veins). OK... makes sense to know that there are no major blockages. The transplant surgeon who saw Rory got pulses on his right groin and foot, so chances are... it will show ok on the aortogram. The urology appointment was another matter. I get the distinct feeling that they don't want to do any surgery on Rory to create a urinary opening, thus making a transplant impossible. We were told that another urologist office would call us on 4/19, but we are still waiting (yes, that's on today's agenda to call them!).

We also talked to his Kaiser nephrologist, who is seeing if plastics at Kaiser can do this procedure on Rory, thus removing the roadblock seemingly put in our path by UCSF. We will see...

My trip to Dallas went well... learned a lot! And it was a nice micro-vacation.

Easter Day came and went for us quietly. I ended up getting sick last week while all this was going on (stress?). Nasty virus that landed in my throat, taking my voice for a few days. I still made Easter dinner (ala Honeybaked Ham), cooking the rest of the stuff, and intermittently lying down to rest. After our 2pm-ish dinner (Since Diana had to go to work, we ate earlier than usual), I went back to bed and vegetated. Thankfully, I am feeling a lot better today, especially in light of the fact that school is back in session - back to the grind! (Hey, I never did get a Spring Break with everything that happened with Rory... can I get a raincheck???)

Well, after they TPA'd his catheter, it seemed to work ok today. At least I didn't get called to tell me Rory's catheter is clotted again. I don't know if they are TPA'ing it again after dialysis today or not.

Update: Yep... they did TPA it afterward. Here's hoping it works Monday.

UCSF Transplant wants to see Rory before he goes over to Urology on Tuesday. We'll see what they say, and I will let you all know.

UPDATE: We may not have bought even more than a few days. They are already having to TPA his catheter today. If anyone knows someone at UCSF Kidney Transplant... PLEASE! PLEASE TRANSPLANT HIM NOW!

(Warning... this is a LONG Blog entry)

The last week has been, um, difficult. Rory's catheter stopped working sometime between dialysis on April 1, and April 3, when he went in for his treatment. They had put in TPA (a powerful declotting agent) in his catheter when he came off dialysis on Thursday. But Saturday morning, nada... zip... zilch. His dialysis nurse called to the on-call nephrologist, who after hearing that it was already TPA'd, told them to TPA it again and send him home. Which they did. So, I picked him up, convinced them to run a potassium on him, but we had to go over to Kaiser and get them to stick him for the blood test. Done. And we waited for them to call us... And waited and waited. In the meantime, I left a message for the vascular surgeon, advising him that the catheter was clotted, and that they TPA'd it a second time.

Since we didn't hear back from the lab, I called Sunday morning to the call center to get the result... test still in lab... (For something that should take an hour at the most???). It was a "life-threatening" status test, but they goofed and sent it out to the regional lab... they still haven't run the test to this day (At this point, it is lost). We had to go BACK to Kaiser and have Rory stuck AGAIN. This time, we waited in the lab for them to run it. It came back, but they refused to tell us the result, even though they were directed to! They called it over to the E.R., who insisted on us coming over there. So, we went over to the E.R., and told them we just wanted to talk to the doc who insisted on us coming over to get the result. Nope... he wanted Rory to check into the E.R. FIRST. Well, Rory refused until he got the result. A nurse finally looked it up (Thank you!), and told him. It was 6.5. High, but not anything we can't deal with at home. If it was like 7.0, I would have insisted on him staying. The doc was still freaked out... we explained our experience with renal failure for the last 8 years, so he was ok about Rory leaving... as long as he signed out AMA (Against Medical Advise)... he hadn't signed in! So, we left without signing it.

The next day (Monday now), Rory went back to dialysis. Lo and behold, the catheter was still clotted (anyone surprised? Not us). It was open enough to pull a blood sample, so they did another "life-threatening" status potassium. We contacted the vascular surgeon, leaving a message that we needed to have another catheter put in. Abby, the medical assistant there, is a Godsend. She got hold of the surgeon (who was in surgery), and got Rory put on the schedule as an "add-on" (meaning: They operate as soon as there is a room available... it can take a while... but that's ok). I also told her that there was a stat potassium at the lab that I had dropped off (There's another story to tell one day!), so they didn't need to order one. That was actually a good thing... sped up the process a bit.

We waited in the parking lot (got there at 10am), rather than driving all the way home, then coming all the way back immediately. Around noon, we got called to go to admitting, which we did... since we were in the parking lot, we got over to admitting before they knew he needed to be there! Got him up to the Pre-op area and we waited... and waited (no biggie... at least he'd get the catheter replaced). And around 5:30, they took him back to the O.R.

7:00 rolls around, and the surgeon (nice guy, and truthfully, a good friend at this point), pokes his head in the waiting room and asks, "Is anyone else in here right now?" I know that means the news can't be good. And it wasn't. He couldn't find a vein anywhere, so he went back into the old vein location. And shoved the catheter in higher. But it wasn't working right in the O.R. He wasn't very confident that it would work at all, and if it did, would have to work "reversed", which doesn't work as well as the normal method for dialyzing someone.

Since he couldn't find another vein, this meant that Rory was out of access spots. Thats the bombshell. No access... no dialysis. No dialysis... death. I knew that this day would come when I would hear this, but still... my heart sunk. Here, my soulmate, might not be able to get dialysis again, and wouldn't live long. Hearing this... well, I held it together, but I could see that telling me was damn difficult for the surgeon. Giving bad news is something every doc learns to do, but still... He did tell me about a few options that might buy us some time, but neither was a "good" option. I told him that Rory needed to hear it directly from him, and to know all possibilities. He agreed.

I told Rory what the surgeon told us. Since he still had some sedatives in his system, I wasn't sure how much he would remember (Which is one of the reasons I wanted the surgeon to talk to him). We went home, and decided to tell our two kids (ages 16 and 17) what we had learned. That was hard. And upsetting for everyone. Its not everyday you have to tell your kids you might not be around in a week or two. They took it hard, but we knew they would. Eventually, we all went to bed... I didn't sleep hardly at all. Kept waking up every few minutes. All night long.

Rory went to dialysis the next morning, to at least try and see if it would work. We held our breath, crossed our fingers, and prayed. They hooked it up reverse... and THANK GOD! It worked! No major problems the whole time he was on the machine! I actually went home after it was running for around 40 minutes. I had to just get away. There was so much tension in me... I had to blow it off away from Rory. While he was at the center, his new nephrologist came in and talked to him (she talked to everyone, not just him). And it turns out that the surgeon and the neph decided to keep Rory on antibiotics "indefinitely", to keep infection from being a cause of this catheter failing.

Dialysis worked yesterday also. And the surgeon spoke to Rory yesterday also, just to make sure that he knew everything. It was what both of us were expecting. Rory's dialysis coordinator is trying to get transplant to put him on priority for kidney transplant. Still waiting to hear. In the meantime, we are seeing the urologist at UCSF on Tuesday, the 13th. Last hurdle, I hope!

I haven't heard a word this morning from dialysis... I take that to be good news. But I still am tense as hell.