Rory has been feeling pretty crappy since he got out of the hospital on the 5th. He has not been able to keep a lot down. He started having a discharge from his catheter exit site last week, which they cultured. Nothing major popped up. Tuesday, the reason why he was feeling lousy became abundantly clear. He came down with a raging infection, running a temp at dialysis of 102.9 F. Even with Tylenol, it went up to over 104 that evening. They took blood cultures, then ran in some heavy duty I.V. antibiotics. He is starting to feel better now, but is still really weak, and I think, very protein deficient. So, I am "buffing" him up with eggs, meats, lots of higher protein items. Oh yeah... his catheter keeps clotting off, so they keep TPA'ing it. And he is oozing a bit of blood from his exit site when he is dialyzed. And life goes marching on... and we pack up our stuff...

Well, it is now 5 days since they replaced Rory's dialysis catheter, and it seems to be running well (knock on wood, or whatever). He still isn't feeling well, but seems to be improving ever so slightly.

No noise from his nephrologist or UCSF about last Wednesday's cardiac cath. Please relist him, guys!

Back to the craziness of school I go! I ended up behind already with everything that happened last week. This week is pure catch-up. 40 pages here, 60 pages there, trying to remember my Spanish... :-)

Well, this has certainly been a crazy week. After Rory was hospitalized and did get dialysis on Monday, we expected him to have surgery on Tuesday. Well, that didn't happen, but that was due to lack of an operating room to do it. So, he was scheduled for Thursday. In the meantime, he had a cardiac catheterization scheduled on Wednesday (we had scheduled it previous to all of this). Everyone agreed he needed the catheterization immediately.

So, Wednesday morning, they shipped him off to another Kaiser facility to have the test done. They took him by ambulance. He had the catheterization, which showed no major changes from 2 years ago. That was actually good news. We hope that this means he is still transplantable (Hey, anyone at UCSF reading this??? PLEASE TRANSPLANT HIM! He deserves the chance to see his kids graduate from high school... He deserves the chance to walk his daughter down the aisle when she marries, and they deserve the chance to have their dad around...). He has now been waiting 8 years for a transplant. 8 LONG YEARS. August 3, 1995 was the date that he was first listed. And he has done everything that they told him to do, but still, no transplant. His doctors at Kaiser have said they are going to be contacting UCSF and try and get them to "re-activate" Rory, and credit the time that he has been waiting. Without a transplant, I don't know that he will last much longer. He is truly running out of places on his body that they can dialyze him. And unlike livers and hearts, when you can't get dialysis, it isn't necessarily going to result in a transplant. A lot of people die each year waiting for a transplant because they can't be dialyzed.

Today, they put in a new catheter, in the same place as before, but "buried" much deeper, so hopefully it will work. He is dialyzing as I write this... here's hoping (and praying).

Still looking for another house nearby also!

Rory was hospitalized today. He has gone almost 1 week without adequate dialysis, was getting very tired, confused, and feeling sick all the time. After this weekend of trying (and failing) to dialyze him, we finally convinced his docs to hospitalize him. After several hours, they put in a femoral dialysis access. This is a catheter that goes into the groin, to allow temporary dialysis. This buys us time to try and come up with a permanent solution. Hopefully, tomorrow they will offer us this solution, whatever it is.

Wednesday, he is supposed to have a cardiac catheterization to see if he can still be transplanted. God, I hope he still can be.

Now, adding insult to injury, I received a letter from our landlord. They are selling our house, and we have 60 days to find another place to live. Timing is everything.