(This posting is a follow up to a previous post called “Dialysis and the Center from Hell Part 2“. You don’t have to read it to understand this post but it’ll make more sense when you do.)
When I made the decision to change centers it was both final and somewhat impulsive. I finally got pissed off enough that I was willing to make the dive. (If you don’t know about my experience with “making the dive”, see my story about “The High Dive“.)
I was out the Center’s door that night, resolved to change centers. The next morning I started making calls. I was in for a shock! With dialysis centers, there’s a front door and a back door. I was attempting to come in by the back door. Patients don’t do that generally.
When you enter a center, it’s usually associated with the nephrologist who treated you before you began dialysis whether through the doctor’s office or the Emergency Room. Most nephrologists are associated with a dialysis center and that’s where you go. That’s what’s expected. That’s that front door. You get referred to a center by a doctor. The back door is when you venture out and locate a center on your own. Most centers are not prepared for that. So, be aware that you’re not coming to them in the usual channel and they are rarely prepared for that.
The next morning I started making calls. The hard part was getting to speak to someone who knew what to do. The number for the center usually led me to the center directly and they were expecting an existing patient to be calling with some problem or another. They weren’t expecting a “shopper” like me. When I was directed to the person I needed to speak to, it was usually voice mail. So, I would leave a detailed message. I’m one of those who try to be direct and succinct about why I called.
I knew what I wanted. I needed to start on dialysis by 3:00 pm s0 I could be off at a reasonable time so I could be home in time to rest before going to bed at 9:30 pm and be up at 6:00 am for work. I am very structured in my schedule simply for survival reasons. I needed my sleep. If I didn’t get sleep I was worthless the next day. So, starting dialysis at a time convenient for me was a requirement.
But, I found, dialysis centers don’t exist for the convenience of the patient. They have their own schedule and they don’t like to vary it. The first shift starts at 6 a.m., the second shift at 11 a.m., and the third at 4 p.m. Some have nocturnal dialysis where you “sleepover” and that starts in the evening after the third shift and ends before the first shift. I was asking to come late into the second and before the third. Awkward!
I also wanted other amenities like comfortable chairs, pleasant settings, cordial staff, etc. but all that was really secondary to the time schedule. Little did I know at the time I started making calls, that I was asking for the world. I learned quickly that in order to talk to the right person, it would take a while. In one case, I was told that I had to make an appointment with the center’s administrator to discuss this and it would probably take a month before I would get into the center. Other centers were full on that shift and not taking patients; I would be placed on a waiting list. Some centers were way out of my geographical area. I needed a place within a reasonable distance from work and home. Some of my calls were not even returned in that day or the next. A new center near my home had recently opened (wonderful) but they didn’t have a third shift (terrible!). I only had two days to find a new center before my next treatment. At the end of the second day of trying, I was ready to give up. I didn’t want to go back to the old center and I wasn’t having much luck finding a new one.
That night I spoke with my son. It was a difficult talk. I saw two alternatives; find a new center or stop dialysis. Since I wasn’t successful with the first, the second would be my reluctant choice and that was not an easy one to accept. He took the news better than I expected. He’s a strong kid who’s been through much so I wasn’t too surprised either. He understood that if I stopped dialysis, I would die. It might take a while or be very quick. We talked and we cried.
The next morning at work I was not too happy. I faced the prospect of not going to dialysis that evening and the eventual terminal outcome. I didn’t say anything to anyone because this was a very personal thing and I really didn’t want to discuss it with even my closest associates at work. But I was sad and quiet and that’s usual for me. I felt like I was in a long hallway and all the doors were closed and locked between me and the staircase at the end.
But I’m also not one to give up. Remember that childhood diving board? I was in the same situation. I was faced with going off the end of the board and I couldn’t retreat. I looked at the computer screen and went through the pins on the map showing all the dialysis centers in my area. I reviewed my list of places I’d called and considered calling those who never returned my call. But, there was one I hadn’t called yet.
A while back I had met John, someone else in dialysis, who worked at the barber shop I used. He was the first person, I’d met outside the center who was also in dialysis, After meeting him, we talked about all things dialysis and I discovered he was a particularly difficult patient with a rebellious streak, but also very charming, outgoing, and friendly. During treatment, if he felt the need to stop, he stopped and left. If he was short on dialysis time for the week, he would go in on Saturday for an additional treatment. He was a scheduler’s nightmare, the square peg in the round hole. I gave him a ride to the center because I was headed that way. He invited me in and introduced me to the people there. The office administrator, Barbara, was really outgoing, cordial and gracious and it was the same with everyone I met but I particularly appreciated how this “difficult patient” was treated. They didn’t see him as a “difficult patient” but as a “person”.
So, I called that center and Barbara answered. I expected the worst based on my experience with other centers but every need or requirement I expressed was answered with the same response, “No problem”. No problem? Yes, no problem. They could accommodate my schedule and make all the arrangements. I could start that day. They would call the other center and get all my information. I just needed to sign a “Release of Information” (ROI) form and that would be it. I hung up the phone and drove there immediately. In a couple hours, all was done. They got a fax from the old center with all the dialysis machine settings and my requirements and, that evening, I was in the new center being dialyzed. Remember, the old center’s social worker said it would take 30 days to get all the transfer complete? Wrong-o! It took a few minutes. It just needed someone who knew what they were doing and this center’s staff knew what they were doing.
I was still a difficult stick. It took four people to figure out where my access started and ended and the best place to stick. I missed Krystal, my beloved tech who knew exactly where the needles should go. But I was used to that. New center, new game of “Find the Access”! And that’s a story for another post.
© 2012 DevonTexas
Thank you for writing this article. Very good information. I hate to ask, but. Are you still alive?
Yes. I hope so anyway. I apologize for not writing more. I have much to write about and I promise to do so. Thank you for thisharing question!