I dialyzed myself on Thursday night but not on Friday as Friday is my day off.
Late Saturday evening, I remembered that my foreclean needed to be changed so I took that oppourtunity to change it.
Unfortunately, when I was reconnecting the new foreclean to the machine, I plugged one of the plugs in the wrong place. There are 4 holes but only 3 plugs. One of the 4 holes is sealed and is not supposed to be used, but smart me plugged the plug in the wrong place.
When I turned the machine on with the intention of disinfecting my machine, I heard an annoying beeping sound. It was my waterbug (waterbug = little device that detects spills, leaks, water, etc). I saw a small about of water on the floor. As I panicked and went to turn the water off, I knocked over my slurpee cup! There was a very small amount of liquid in there but it was still annoying….but I’d be getting the mop out anyways….what’s an extra few millilitres of fluid?
I reconnected the foreclean properly, turned the water back on, and waited. I could hear that dreaded sound of leakage again. I got down on my stomach and looked right underneath the machine. Water. It was not coming from the foreclean filter area which is on the back of the machine, but right underneath the machine. I turned the water off again and called the technician on call.
“You know why this happened?” the tech asked me. “No I don’t….what happened?” I asked excitedly. I was very curious to know what the problem was.
“YOU’RE TOO ROUGH WITH YOUR MACHINE!!!” he exclaimed with an almost scolding tone in his voice.
“WHAT???!?” I practically screamed. What the heck did he mean by “too rough with my machine?” Like, do I throw the behemoth of a machine around carelessly?? Did I use a jack hammer to remove the foreclean from the back of the machine? Do I use dynamite to disinfect the machine??? What the heck was he talking about!!?
He told me that a tech would be by to fix the machine on Monday. Great…I haven’t dialyzed since Thursday, the dialysis unit will soon be closing, and they’re not open on Sunday. Would it be a good idea to wait that long to dialyze again? I didn’t think so. The tech suggested I go to emergency, so I did.
My Mom and I got to emergency at around 11pm. I signed in and did all of that junk that you’ve gotta do when you get to emergency such as have your temperature and blood pressure taken, then I went back to sit down. I took my sister’s Nintendo DS with me so I began to enjoy a game of Super Mario.
My hands started getting tired. I looked over at my mother who was fast asleep in her chair. I then noticed a police officer holding a piece of paper come into the emergency room waiting area. I heard him say my name and I saw the triage nurse point at me. His name was P.C. Brar. He came to check up on me as per my father’s instructions. My father couldn’t check up on my as he was in Parry Sound for an annual camp that he holds at the native reserve for kids in the neighbourhood. He knew I was there because I called Sgt Skye, the police seargent over at the reserve as I knew Sgt Skye would know how to get in contact with my Dad.
PC Brar was very sweet. We chatted briefly and he gave me a phone number other than Sgt Skye’s. I called Dad back and told him that PC Brar was there. After PC Brar was assured that I was ok, he went on his way. Oh, Lo and behold! The nurse called me in. What a coincidence.
Mom and I went into a room where I laid my tired body on an uncomfortable stretcher. My mom sat in a chair in the room that looked like a dentist chair. Luckily it had mechanical controls on the side so Mom was able to recline back in the chair. We fell asleep.
At around 2am, a doctor came in and asked me a few questions. She went on to say that she’d call nephrology in the morning to assess me. NOOOO!! Don’t you get it?? I came here TONIGHT in an attempt to be proactive, not because I wanted to sleep her all night with no progress being made!! ARGHH!!
Mom and I woke up at 9am. Still nothing. We walked to the Tim Hortons where I got breakfast and my mom just got tea. I was less than happy because no progress had been made, and if I were to sit there and wait for things to be done, much less wait for a machine to appear, wait for the machine to be set up, the actual dialysis time….I’d be there for 24 hours for sure.
One of my old doctors that I recognized came in to see how I was doing after mom and I returned to our little room in the ER. She said she would have some blood tests taken to see if I was in dire need of dialysis, otherwise I could just wait until tomorrow when the tech comes to my house to fix my machine. Fine.
Blood test got done at around 10:30am. By this time, Mom had already headed home as she did not want her car to get ticketed/towed away.
Shortly thereafter, I got evicted from the room I was in and banished to lay on a stretcher in the hallway. Greattt.
I pulled out the DS again and played some more Super Mario.
By 2pm, I was certainly getting annoyed. I called my nurse and asked her to call nephrology. About 30 minutes later, a nephrologist that I had seen around before came and asked me what bath I’m on. I told him 2k. He told me that I should talk to my dialysis unit about being on a 3k bath…..he then told me that my blood work was fine and I could go home.
So, basically I just wasted a day of my life for no reason. Why oh why couldn’t that doctor who came at 2am order blood tests so that this could have been resolved ages ago??
So, I called my mom and went home. My machine is now fixed. Cesar, the nice man who came to fix my machine, laughed histerically when I told him that the other tech I spoke to on the phone told me that I was too rough with my machine. He told me that the pressure created by plugging the foreclean into the wrong spot caused tubing inside of my machine to separate, therefore causing a leak. It took him less than 2 minutes to fix.
I spoke to my nurse Rose and she told me that there was no reason for me to be on a 3k bath.
I’m happy to be home…but GEEZZZ! WHAT a waste of life this weekend was! Now I’ve said it before, I’m happy to be in a country that has great medication, and treatments, etc…but to be in an ER for 15 hours, to have a blood test and then be told to go home….c’mon. That is Extremely Ridiculous..
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ok, I waould have been PULLING MY HAIR OUT!!
We've had similar ER stories with my wife's dialysis. Most ER's are ill equipped to deal with dialysis patients. At our hospital, Duke, you have to be admitted to intensive care to get dialysis off hours as their hospital dialysis unit is only open during the day and evening hours. When my wife had our baby on a Friday, she had a fluid shift that was expected by some of the doctors, however they didn't properly schedule her dialysis for Sunday because they don't do dialysis on Sunday. Eventhough they did dialysis on Saturday, they were too conservative with dropping her dry weight. We begged for dialysis on Sunday night as my wife suffered from edema. >>The attending doctor said the requirement to go to intensive care for dialysis was "wet lungs". It can take days to get wet lungs and by the time you have them you are close to having congestive heart failure. So, yeah, you can get dialysis off hours at the hospital if your heart begins to fail, but don't expect it otherwise. We couldn't figure this logic out. Be thankful for your home machine. In some ways you are outfitted to do 24/7 dialysis better than most hospitals.>>When our NxStage machine malfunctions, some of their techs on call will just say "go to the hospital" we think because they don't want to be liable for your care at that point. Some of the better nurses they have on call will just overnight us a new machine. Sorry to brag about NxStage, since you can't get it, but once our machine went down at 9 PM and they sent us a new working one by 9 AM the next morning.>>Don't worry too much if you miss a treatment because of a machine problem. Just remember that it eats your skip day. Just think of all those people in-center that occasionally have to pull a 3 day weekend without dialysis we they visit distant family or around Christmas. >>Try to work out an arrangement with a center or the hospital for dialysis the next day if you have to go without the night before. The ER is just going to warehouse you and monitor your vitals. >>ER triage people don't get serious until your vitals crap out. They won't let you go because of the liability. If you ever want prompt service in an ER tell them you are having unbearable chest pains, but you have to deal with a gazillion tests once you utter those words. >>If you go to an ER off hours the attending doctor will probably be a young, inexperienced guy who is on some 20 hour shift and may or may not know about how to deal with dialysis patients. You have to wait while he consults some older doctor who is sitting at home watching TV or asleep about your problem. Then after your young doctor makes his rounds with the other 10 patients assigned to him, he will be back to talk to you (2 hours later). Anyway, that is my take on ER's on dialysis patients.>>I don't think the situation will improve until hospitals adopt a portable machine like the NxStage for critical care and pay to have attending nurses/doctors trained on how to use the machine. When will talk to doctors and nurses outside of the dialysis clinic world about our home hemodialysis, it seems they think we are launching a mission to the moon each night, so I don't know what it would take to make them comfortable with doing the process themselves.
Julie...I WAS pulling my hair out! LOL>>And Kevin, you are so right. I'm not sure what the problem is. I remember once I was in the ER because my knee was warm and swollen (ended up being an infection). They didn't have a room for me, so where did they put me? In the hallway...right beside an automatic sliding door that was opening every 10 seconds! Yes, put the infection ladened, zero immune system girl in front of the sliding door in the dead of winter. Yes, I think that's a good idea...>When I started shaking uncontrollably, a nurse who just happened to be walking by brought me a warm blanket and wheeled me into another hallway....?>I've spoken to one of the nephrologists in my hospital and he said that they're working on getting a portable machine here in Canada. I don't understand why it takes so long for Canada to adopt the new and cool stuff...be it dialysis machines, iphones....all kinds of stuff.>>But I agree with your "skip day" comment. Yes, missing a dialysis run due to a machine malfunction sucks, but when everything is on the up and up, it's great knowing that I can decide to dialyze on a day that I might not normally dialyze on. Perhaps I drank a lot that day, or perhaps I'm going to be out late the next day, so I control my own destiny.>>I hope they have a big fanfare coutdown for the nxstage dialysis machine when (and if) it is released in Canada, just like they did for the iphone when it was released in Canada a few days ago. I will certainly be camping out overnight at the dialysis clinic that'll be despensing the unit to patients.