It seems tricky to get tied into the system at a dialysis center. Tricky for some centers anyway. In the case of the center I’m using now, it’s not a problem. They are proactive. They have a very good staff that seeks out problems and resolves them before they become a real issue. I am part of that system as a Patient Rep. They rely on me to give them a “heads up” on problems. But, they seem to be the exception to the rule.
In the center I used previously, it was a very different story. (I should name names but I won’t… for now). In that center, the social worker was almost non-existent. She was there several days a week but I’m not really sure what she did. When I read that centers should have Patient Reps, I talked to her about it. It took her nearly six months to “send the email” to the ESRD Network to let them know I wanted to be the Patient Rep. She made it appear as though it was a position to be applied for and accepted. I found out later, it’s just a matter of her letting the ESRD Network know my name and contact information. Frankly, I don’t think she ever really sent an email because the Network had no knowledge of me. Nonetheless, she claimed she had gotten approval so I set about my duties as a Patient Rep.
Over a couple weeks I generated a list of 32 items that were issues in the center. Many were from discussions with other patients while sitting in the waiting room before treatment. It wasn’t hard to find the issues. There were a lot of complaints. Other items were obvious to me from my own experience in the center. My list wasn’t just problems but also carefully thought-through solutions and I was open-minded to any suggestions that might make things better. I just wanted to get the problems fixed. It wasn’t important to me how they got fixed but that they did.
The center is an older (oh heck, it’s old) center. When I started there a couple years earlier they said it was going to move and be improved. That explained some of the dilapidated conditions. But after a couple years, nothing was happening in the way of a move.
And when I say, this center was old, I mean really old. The waiting room chairs had to be from the seventies when dialysis first began. Often it was full to overflowing with patients awaiting dialysis and others waiting to see the doctor as non-dialysis patients. A grim-faced receptionist stared down on the crowd behind her glass partition. But she worked for the doctor, not the center, so she didn’t care much about the dialysis patients. There was room for only one wheel chair at a time so if there were more, it was very awkward for all concerned.
The center was behind two closed doors and down a hallway so they didn’t know who was waiting and the patients had no way to let them know there were there. The techs had to come into the waiting room to see who was there and you had to hope they would pass along to the other techs that you were waiting. You never knew who was going to be your tech or which chair or what part of the two sections of the center you would be in. Suffice to say, it was a confusing system and this was outside the center before dialysis even began.
Once inside the center, it was best described as, “The Land of the Living Dead”. It was sullen and the morbid quiet was all too often broken by the wailing alarms of the machines. I can’t adequately describe the alarms but there were several different one for each situation and they were all loud and obnoxious. The techs were deaf to them. They would go on and on for several minutes. It was torture because the patients couldn’t do anything to silence them. We just had to endure.
The center didn’t have personal televisions. They still had old tube-style TV’s hanging from the ceiling and viewed by three (sometimes four) patients each. Some chairs were so far from the TV it wasn’t worth it to try because you had to strain your neck to see it. And there was no cable, just the digital antenna that only got local channels. The fun thing was to watch the techs play “who has the remote?” when you would ask them to change the channel. It would often take a half hour for that game to play out and sometimes it would be “I can’t find the remote”. So, you and your fellow patients are left to watch soap operas. This probably contributed to the “living dead” aspect of the center.
I could go on and on describing the horrors of the center but I will cut to the chase. I presented my list of 32 items to the center’s Director of Nursing and she sat with me as I dialyzed, smiling and talking sweetly like I was a first grader. She went through every item, very carefully explaining why each one could not be resolved or fixed. All that work compiling and thinking through possible solutions all for naught, nada, nothing. I was very disappointed but I was also resolved to continue my efforts.
Finally after over a year of banging my head against the wall, I decided to change centers. I didn’t know it was so easy but, of course, the old center didn’t see it that way. The social worker (wandering around, avoiding eye contact with any patients) told me it would take a couple months to complete the paper work. The nurse tried to talk me out of it. The techs understood. They didn’t like working there and couldn’t understand why patients put up with it. The regional manager (yes, I even got up to that level) seemed helpless to do anything to improve conditions except he did get rid of a couple bad techs. He never acknowledged my email that I was leaving. The doctor seemed disappointed and I was too at the prospect of having to change docs. He is a good nephrologist and had cared for me well over the last several years but when you change centers, you change docs too, I found.
It took a couple days of very intense and discouraging searching but I found a new center. The difference was night and day. That’s the topic of my next blog. See “Dialysis and the Center from Hell – Part 2”
© 2012 DevonTexas
Ugh, been there done that. The list of issues at my old center could mirror the list at the center you went to. The techs were okay, but the FA, SW and dietitian were completely useless paper-pushers. The medical director and other nephrologists were clearly just there for the paychecks and had no real interest in seeing their patients live fulfilling, productive lives. I had to get out of there or I could feel my life being sucked away.
Here’s my question that no one seems to be able to answer….why are cancer patients treated like gold and dialysis patients have to go through all of this crap? I have my own theories.
Good question. It may be that cancer patients have a terminus. They either improve and move on or they die and aren’t patients anymore. Dialysis patients are in for the long haul usually. The nature of the relationship with these patients is different. Does that make sense?
And thanks for visiting the site. Your contribution is appreciated.
Devon, you hit the nail right on the head. I really do think that the medical community thinks of dialysis patients as expendable. We aren’t going to get better, so why waste time, money and resources allowing us to either a) get better to the point where we can still live fulfilling lives or b) at least have some shred of dignity left when we enter the dialysis center. I’ve had long discussions with my nephrologist over this and he also says that the money factor comes into play as well….oncology is a much more lucrative specialty.
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