I retired in July 2012 and by November 2012 I had end stage kidney disease. I was Ill for at least 18 months before I had to be rushed to the hospital. I'm telling my tale in the hopes that what happened to me can be prevented by others.
Good Monday morning. The Monday after Father's Day. I treated Dad and Brian to Hot n Juicy. Their choice. It never disappoints!
So. The dark side of dialysis. What do I mean? It has to do with the (mis)treatment of dialysis patients. There are approximately 400,000 of us who need dialysis. Most of the patients are going to dialysis centers. And most of the dialysis centers are run by 2 large companies..Davita and Fresenius. Now CMS, the Center for Medicare and Medicaid Services, a government agency, "oversees" these companies. If a patient has an issue with their treatment, or their dialysis clinic, or the corporations, the issue can be mediated by CMS after going up the chain. Because the care of the patient should be the highest priority. Right? Life over profits, yes?
Well. No. Profits first. Look. $77,000 per year per patient. $77,000 x 400,000 = $30,800,000,000. Whoa! There's money to be made and they can't have patients rocking the boat now can they. What do I mean by rocking the boat? There are standards of that should be maintained. First and foremost is the cleanliness of the facilities. Dialysis patients are highly susceptible to infection. Clean and sterilize facilities are (should be) mandatory. The patients have large needles put in the arms at least 3 times a week by technicians. The blood of the patients is being moved out of the body through a dialysis machine, cleaned and returned to the body. Now there are a lot things that the blood flows or the needle access that need to be sterile. Lots of places for failures.
Now you'd think the dialysis patients have the right to question procedures when it comes to them. Infections could kill us. Once, in my center in Detroit, I asked my tech to change her gloves. She complied with no questions. But some techs get an attitude. Once I saw a tech start to use a dialysis needle on a patient that had been removed from its sterile packaging. A senior tech read the riot act to that tech. When a patient finishes treatment and is off the machine, the machine and the chair is wiped down with industrial strength wipes. The center also had a cleaning staff. But this was in Detroit. At a private dialysis center. With lots of staff.
I moved to Las Vegas and ended up at a corporate run center. The differences were mind boggling. The ratio of staff to patient was much larger, which meant the techs were rushed and more prone to mistakes and cleaning and sterilization was not as thorough. And the staff was stressed and there was high turnover. Not good for the patients.
So sometimes patients rightfully complain. You'd think that would fix the problem. Heh. No. The complaint can start a retaliation of the patient who has the audacity to complain. A patient may complain that a tech causes pain while inserting the needles. There are incidents, too many to count, of the tech going out of the way to make sure the stick is painful. Or ignoring the concerns of the patient. And if the patient is really lucky, management will side with the employee, disregarding the concerns of the patient. And should the patient take it up the chain to the company, the patient will be labeled a troublemaker. So now the patient lets his concerns be known to CMS, but CMS sides with the company a majority of the time. So now, the clinic gets to kick the patient out of the center.
But wait. There's more. The dialysis center will blackball the patient and other dialysis centers will not accept the patient. You understand that this is life threatening. Basically a death sentence. They say hey, you can go to the emergency room when you need treatment. But the ER will only take you if you are about to die..potassium levels and phosphourus levels elevated, excessive fluid retention, pulmonary edema. All because the dialysis has the ability and the right to deny service. Ugh.
I was a pretty good patient. At least in Detroit. I crossed swords with a tech once. I was about 15 minutes late. She tried to fuss at me. Bitch, I'm a grown woman. Get out of my face. I'm late because I as having digestive issues. I could have been on time and pooped in the chair for you. I chose not to. But she kept on. How they'd have to change my chair time. I told her to get out of my face and send the charge nurse over. Lol. I actually did the talk to the hand thing. The charge nurse talked to the tech and I never had to deal with the tech again. And my time didn't change.
In Vegas, my issue was with the charge nurse and my nephrologist. They treated us with contempt. I wasn't having it. Fortunately the social worker was my advocate. Oh. Did I mention that the majority of patients kicked out of centers were people of color? Anyway. I'll have more on this later. A slide show passed through my timeline about an organization, Dialysis Advocates. They work with people up and down the chains to make sure people are not mistreated and right the wrongs. And yeah, I have none of these issues because I do my dialysis treatment at home.
That's it for today. Cooler here than Detroit today. Without the humidity. But don't worry. Back to triple digits by mid week. Stay cool and enjoy your day!
Good Tuesday morning. I'm giving this blog another chance. The past several times I wrote, the software sent my post into cyber nothingness. Seeing an hours worth of work vanish is oh so not rewarding. Ugh.
So minor updates. My phone died a horrible death. Actually the charger port died. We know it was the port because when we took it to the Sprint store, the guy recharged it on a wireless recharger. Anyway. Sprint tried to repair the phone. They couldn't. I got a new phone. I was able to recover almost everything. Photos included. And Sprint gave me a loaner phone. I'd call it a lame LG, but a lame LG is better than nothing. Tip. Get the insurance for your cell phone. Anyway, we went ahead and got the wireless rechargers. I like it.
My laptop was cranky. Whenever I went into MS Word, the screen would blackout. Every time I typed, I'd have to touch the keyboard to bring back the screen. That. Was. Painful. Took it to Best Buy. The guy fixed it for free..just needed some updates. And my iPad is sputtering. It's lived a long life! Lol. Got it before I started dialysis. Holding on.
Glen got neutered and chipped last week. He came home drugged and with the cone of shame. We got him a neck pillow. It's better than the cone, but it still looks uncomfortable. One more week for that. He also got the ID microchip. He's still a puppy, but he's mellowing out.
Dialysis is ok. It keeps me going. Heh heh. I still do the meds and food juggling act. My blood labs will certainly tell on me. By for now, everything is ok. I'm low on my protein intake. Not sure what I can do to increase it. The dietician has threatened me with a protein drink. Ugh. Bleah. Yuck. I've been chickening and shrimping and egging. The good news is my phosphourus is ok. Just need to watch the beans, nuts and dairy. The potassium runs low, so bananas, orange juice and avocados are Ok. Yay!!!
We got a letter from the HOA that indicated we needed to paint the garage door. They specified the color paint and where we could buy it (!). We also made a request to the management company to check in the roof. So the garage door was our responsibility. We got it done and it looks good. The roof is the responsibility of the HOA. About 2 months ago someone came out to inspect the roof. And then we heard nothing. Until last Monday when a crew showed up. They literally redid the roof. 3 days. In the hottest weather of the year to date. The noise on the roof worried Glen. He kept looking up! Lol.
We tried a new restaurant, Oyster Bar at Sunset Station. I got the pan roast. It's shrimp, crab and lobster in a tomato, cream and brandy sauce with rice. And you determine the spice level I got a 7.. Out of 10. Tasty! And no, I don't do oysters. :-(
That's about it. Dad is doing great. Brian is wonderful as always. Shawn is on the west coast and that makes me happy..even if it's Oregon. Hot again this week. Stay cool and have a wonderful day!
Good Tuesday morning. It's been a while. I know. My only excuse is I'm not feeling like writing. And I don't care. I am so over this ESRD and dialysis this. It's tiresome and no matter how I try to sprint it, I'm tethered to a dialysis machine. Yes, I'm doing treatment at home. And yes I'm doing it at night. Yes, my labs are pretty good. But. I don't like being tethered to the machine 4 nights a week. I have 2 needle, each with a tube running blood through the machine....blood in, clean blood, return blood. For just over 5 hours. I'm pretty much stuck on my back the entire time. No tossing or turning. And I still have days when I feel awful. Ugh.
Good Tuesday morning! I slept well last night. And most of yesterday afternoon. Let's start at the beginning, Monday morning. We started the day at Heritage Park Aquatic Center. We're on the northwest side of Henderson. The pool is damn near in the mountains on the southeast end of Henderson. Literally cross town. As a matter of fact I can see the roads dead end into the mountains or the desert near the pool! Lake Mead is basically just over the southern mountains. I digress.
We get to the pool, change clothes and head in to the pool area. Yeah, the lifeguards know our names now. They're mostly kids and are amused at the antics of "seniors" at deep water fitness. Brian and I are at side of the pool with the more "vocal" swimmers. Heh heh heh. Again. I digress.
The class before us is finishing up. And the members of our class are straggling in. Oh yeah. Our instructor is a tiny little thing. With the voice of a drill Sargeant. I can hear her while I'm in the dressing room! Once class starts we move nonstop for the next hour. Legs, arms, core, balance, stretching, resistance, range of motion, cardio are just a few things we work on. We use barbells, noodles, fins, parachutes, kick boards, and tethers. Not on the same day!!! It is work. We bitch and moan. An yet we still show up! Lol. When we finish and get to the locker room, there is a lot of sighing and deep breathing. We just finished moving for an hour...non-stop. We complain and then show up for the next class. Lol. And yeah..it's worth it.
Our next stop was breakfast. Metro Diner. It's pretty good and there are some good breakfast choices. And they have the best hazelnut coffee! Portions can be large...that seems to be a "thing" in Las Vegas...ridiculous portions. Time for me and Brian to share meals. I digress.
We head home and rest from the workout because I have medical procedure at 1:00. A dialysis related procedure. I read my instructions at the diner. No food 3 hours prior to the procedures. Whew. We finished breakfast just after 10. We chill and entertain Glen until it was time to go. The Vasvular center is clear across town in Las Vegas. We try to plan the route and time because there is a massive construction project on the busiest freeways in Nevada. So then the streets get congested. Anyway. We timed it ok and arrived before 1:00. I got called in the back just before 2:00. It was busy. Oops, lots of people needed procedures.
Let me backtrack. We are at a vascular access center. This center services dialysis patients. Our access are our lifelines. Literally. If the access clots, closes or blow, or any of a number things, we would be unable to do dialysis. And so then we'd die. So what usually happens is your access may clot or close up over the weekend. Or even overnight. I call my nurse who calls the access center to schedule the appointment. On this Monday there was a steady stream of patients. For my case, it wasn't a dire emergency. My nurse gave me a work around , but the issue still needed to be addressed.
So finally I'm called back. Brian comes with me. I chuckle at the size of my file. I think this is my fourth time there. The nurse assures me my file is small! Lol. We go over my meds. I remind her that I allergic to the dye...that's injected into my access to see where the blockage is. It's in my record and the solution of using benedryl is there. So the first time I had the procedure, I had an immediate bad reaction to the dye in the middle of the procedure...the team of course, was professional and addressed it immediately and moved on.
I'm prepped on a table. I'm hooked up to the automatic blood pressure machine. Some nodes are placed on my back and chest. I get the oxygen tube. My left arm is stretched out palm up on an extension of the table. It's get washed with blue stuff. A glove is put on the hand. A paper barrier is put up between my head and arm so I can't see what's going on. Boo. On my left side are 2 monitors. So I can see as the doc is looking for blockages and I can see when the balloon is inserted for the angioplasty. Doc gives me fentynal (?), benedryl, and inserts the dye. I actually taste the meds as they are administered and then get high. It's conscious sedation. I'm aware of what's going on and what's being said and the team is talking to me..but I feel...loopy. The procedure is fine, although I can feel when the balloon is expanded. Lot. Of. Pressure. I squealed. Doc apologizes. Lol. Mission accomplished.
After the procedure I go back to a recovery room. My stars are good. Doc explains what the problem was and what got fixed. I get apple juice and animal crackers. Put my shirt back on. No pressure on my left arm. Can't even use it it stand up. Done by 3:00. We leave. Brian picks up some chicken. I slept on the way home. Because drugs. We get home, I stagger into the bedroom and fall asleep. I thought I'd watch the news but it was after 6:30 when I woke up! At a little. Went back to sleep. Because drugs. Woke up just before 11:00. Geez. Strong drugs. And I'm sure recovery of swimming figured in there somewhere. And then. I slept all night. Geez.
But now, I'm just fine. Back to running errands today. Massive hugs for Brian for bring there. At one point I woke up to find a blanket over me. I know I didn't do that. <3
So there you have it. I needed the procedure, but it was just part of my day. I've had it several times. It's still kinda scary because it's a procedure. But you roll with the punches. It's part of dialysis. And there was a steady stream of dialysis patients at the clinic getting procedures. 2 doctors. 2 teams. 2 procedure rooms. Of course I was clowning. And during recovery, a patient in the stall next to me waiting for the procedure (his first time) starting clowning with me! Lol.
That's it for today! Looking at the 80s by the end of the week. Time to pull out the sandals. And yes, I had my pedicure last week! :-D Have a wonderful day!
Angioplasty. Before balloon. During balloon and after balloon. Blood can now flow freely!!
How the fistula works. We don't want a blockage here.