Happy Halloween - we got a trick. I've been mad so long that the whole situation is funny, in a macabre sort of way.
So 30 minutes into James' dialysis tonight I text him "u ok" because I can see him in the window and he looks furious. He texts back that he is in pain, the alarm on the machine has been going off continuously for 30 minutes, and they are trying to run the machine faster than the new, unmatured fistula is able to go. I ring the bell at the door and ask for MJ, the supervisor. A nurse answers, says she will get MJ. I wait 30 minutes. The nurse returns and says MJ is on the phone. I tell her they are running the machine too fast, she tells me no, it's by doctors orders. They never do it wrong. I already happen to know this is a total lie. James Moore is one of their last patients and they have repeatedly cut his treatments short so they can leave. As a results his Kt/V is now very low (he is not getting good dialysis). I wait another 30 minutes. James and I text a few times and in fear that the fistula will be damaged, he tells them to stop his treatment and let him go home. No fistula = no dialysis = death in about a week to ten days. Maybe sooner with the heart failure now. However, they have already given him heparin so he won't clot their machine, plus he is now on an anticoagulant - so they can't get him to stop bleeding once he is off the machine. MJ finally comes into the office and sees I am in the waiting room. She smiles and asks if I am still mad.
I ask her what is going on and she tells me that they would NEVER EVER run a machine too fast (ROFLMAO) and that they were using the right size needle and running it at 350 which it would do last week, but now it will not even run at 250 so they just don't know what to do. (Admit the access is failing and needs to be fixed or replaced? NOOOOOO Not that!) She can't understand why James is so angry. I mention he was in a bad mood when he came in because he wanted to go to the bathroom before a four hour non-stop treatment. When he went to the bathroom in the waiting room there was no toilet paper. When he went to the bathroom in the treatment area it was covered in shit and he adamantly refused to use it. This, by the way, is typical in this clinic. Filthy bathrooms with no toilet paper. In the treatment area. A filthy sink he is expected to wash his fistula in so they can see he cleaned it!!!! FILTHY. But I mention he and I had also had an argument earlier in the day - you see, he is getting bad dialysis and he is toxic, and we are out of food, money, and his Pepsi. So then it was ALL MY FAULT because we argued and he was in a bad mood.
The fistula is failing because we had a martial spat.
Then it was our fault because he is a PEPSI ADDICT. Emphasis on ADDICT. The fistula is failing because he is an ADDICT.
(Ignoring their own sure knowledge that he has previously quit Pepsi several times, each time proving that it makes no difference in his blood phosphorus levels - and that clearly it is not an ADDIC TION).
So he gets out and I ask for a print out of the treatment. 30 minutes later I finally gave up and left without it since no one would answer rings at the door, and no one was in the office. Medical clinics really don't like to give you print outs they know you can read and point out THEIR FUCKING MISTAKES.
Now what do I do? He can't have dialysis. I cannot call his kidney doctor because now all communication with her has to be through the dialysis clinic (this is a rule). They said they called her and he should limit his fluids.
Yes, care for End Stage Renal Disease by limiting his fluid. I have to wonder what they told her? Surely not that the fistula HAS FAILED and HE NO LONGER HAS AN ACCESS FOR DIALYSIS because, I dunno, she might have asked for some tests or called the surgeon?
No, we're told to come back Wednesday for his regular treatment.
HOW HOW HOW are they going to do that, since they are telling me the FISTULA IS NOT WORKING?
So, I am not allowed to call the kidney doctor. The clinic says it is my fault (of course). Now what do I do? He has no dialysis access and I cannot contact anyone who can order any kind of tests or examination or some sort of new access.
In a few days he'll fail and be back in hospital and you know what they will say then. ITS OUR FAULT FOR NOT GOING TO HIS DIALYSIS TREATMENT.
I don't understand what the point is of crippling along with poor or no access until he is near death. We have been going through that ONCE A MONTH if not more often all year. They know the access is bad, but instead of addressing that they give him a poor treatment, tell him to limit fluids, and send him home. They give him progressively worse dialysis until either they cannot get the access to work at all - or he ends up in the hospital with fluid on his lungs and you know the VERY FIRST THING we are accused of - is not going to his treatments.
In SIX YEARS we have NEVER MISSED ONE SINGLE DIALYSIS TREATMENT EVER.
But it is always the FIRST thing we are accuesd of - it is OUR FAULT he doesn't get dialysis.
Maybe I am still mad. After all, they sent him home with basically no dialysis. He may die in the next few days.
But it will be OUR FAULT.
Because THEY never make a mistake. NEVER. EVER. So it must be OUR FAULT.
We don’t cannulate the fistula. We don’t’ run the machine. We do everything they tell us to do exactly as we are told to do it. But if anything goes wrong, obviously it is OUR FAULT.
At some point mother fuckers it has to be YOUR GODDAMN FUCKING FAULT.