AboutSince the dialysis non drama is over, I figured I'd change this to an anything or whatever blog. Could still be dialysis related,... or not
On this day, 23 years ago, February 21st, 1991, I was diagnosed with kidney failure. I was 12 years old at the time.
The way I remember it is this. I hadn’t really been feeling well for a few months, and this particular day was no different. I had been diagnosed with so many different things, from throat infections to pneumonia. Nothing that was done made me feel better. This particular afternoon, I remember telling Mom that I was tired, and was going to take a nap. A few hours later, my brother, who was 6 at the time, came in from playing outside. He went upstairs, and being hte nosy little brother that he was, he checked to see what I was doing. He went downstairs and told Mom that I was making funny noises.
I remember her waking me, and asking me to get up, but I couldn’t move. My hands were clenched in tight fists, and I couldn’t open my mouth, even to speak. Between Mom and Dad, they got me downstairs to the kitchen, but that was as far as they could get. Mom had called the hospital and they told her to take me in, but since they couldn’t get me out to the car, they called an ambulance. Mom rode in the ambulance to the hospital with me, and Dad followed behind, after leaving Bro with a neighbor.
I don’t remember much at the hospital, except that they didn’t really know what to do with me. I remember two doctors talking about brain seizures and life expectancies. Mom said that she knew I could hear and understand them, because the more they talked, the wider my eyes got. When the pediatrician who was in the province at the time arrived, and sadly, I don’t remember her name, things changed.
Though I found out later that it is quite a rare occurrence, she had seen what was happening to me before. All she needed to confirm it was a simple blood test. I don’t know what the actual units of measurement are, but I had a creatnine level of over 1600, when a regular, healthy person has a level between 50 and 150. This indicated to her that my kidneys had failed. I still think that it was pure luck that she had trained with the pediatric nephrologist in Halifax that she was sending me to. I was given calcium and albumin, I think, because my severe lack of those was causing my immobility, and a medivac flight was arranged for me.
I was loaded on to a Hercules aircraft. It was my first time on an airplane. I remember the take off, but I fell asleep during the flight and didn’t wake up until after we’d landed. By then, I was able to move and speak again. I was admitted to the IWK Hospital for Children in Halifax. It was still a few hours before I met Dr. John Crocker, the grandfatherly nephrologist who would be my doctor until I turned 18, when he inserted my first peritoneal catheter for dialysis.
This was the beginning of my journey with kidney disease that continues today.
We live on a side street, and our building is kind of hidden from view of the main street by two buildings, and one of them happens to be a pizza joint that we share a back yard with. Last night, Mom called this pizza joint to order a pizza. We’ve been having trouble with our cordless phone, and the guy in hte pizza shop couldn’t hear her. While she was getting her cell phone out to call the guy back, I told her to go out the back door and yell.
I’ve watched this video of Dr. Donald Low, speaking about dying with dignity several times. He died 8 days after the video was made of an untreatable brain tumor.
Being someone with a chronic illness, who is essentially kept alive by a machine, I’ve thought about the Right to Die issue. I know that one day, the treatments for my illness may no longer work for me. I’m hoping that this doesn’t happen for many, many years, as I’m still young by most people’s standards. Still, I’ve seen many around me die, young and old alike.
I wonder sometimes, if (when) my time comes, and dialysis no longer works for me, and transplantation is no longer an option, what will happen to me. I know that without dialyis, it can take anywhere from 2 weeks to 2 months to die, and it is not an easy death. I would not want to suffer while the fluid that would inevitably build, take it’s toll on my lungs or my heart. I know how I feel if I should miss a treatment, and I would think that missing all treatments would be much, much worse. I know that I would prefer to die quickly, without the pain or the inability to breathe.
Hopefully, if this ever does happen to me, we will have come to the conclusion that terminal patients do not need to suffer like this, that they should be allowed to die on their own terms. We treat animals better, by not allowing them to suffer. Terminally ill people should be given the same respect. They shouldn’t have to suffer needlessly. Why shouldn’t they be able to die when they are ready to die, preferably before they are to the point, like Dr. Low said, that they are unable to swallow or communicate? It seems barbaric to me, and we’re supposed to be a civilized society.
I had the strangest dream. I had to write it down before I lost it.
I was invited on a trip by Coleman and his mother that was provided by people I thought were friends of Coleman. We travelled by private plane to an undisclosed location. I tried to figure out where it was by using foursquare on my phone, but it wasn’t reading anything. We went into a restaurant that looked like it had been a huge warehouse at one time. It was very drab on the inside, with a couple of long tables, and not much on decoration. We were served a thin crust pizza that was not very well cooked. I got up and went to the bathroom, which was a big room with two stalls, two sinks, and a lot of space. This is where I ran into Julia Hoffman.
Julia told me that we needed to get out of there, but she didn’t say why. There were four of us who got out. Coleman, who’d somehow morphed into Tony DiNozzo from NCIS and will be called Tony from here on out, me, Julia, and Barnabas Collins.
We managed to steal a car, and Tony drove us out of there as fast as he could. We didn’t know where we were, so we were just driving. Julia and I watched a car pull along side us. Julia was first to realize that it was men from the restaurant. I saw a gun and yelled “duck!” just as they began shooting out all the windows of the car. Tony was a better driver than I thought, and he weaved the car through traffic and let it roll into a deep ditch, as if there was no longer a driver. This must have satisfied the men in the car, because we never saw them again.
We walked along the ditch for a bit, to stay out of sight and eventually came up out of the ditch on to an off ramp. We walked along the off ramp, staying out of the way of the tractor trailers that were coming along. We figured that if they were getting off the highway here, then there must be something they were going to. Unfortunately, all we found was a gas station that was all closed up. We broke in, hoping to figure out where we were.
Barnabas was no longer a vampire, but he still had some of his powers, and used them to calm the dogs that were threatening to tear us to pieces. We didn’t find anything in the gas station that could tell us anything, so we moved on.
I’m not sure how, but we came upon a great house that Tony recognized was his father’s house, so we just walked in. He was able to get us all new cell phone, and I was finally able to call my mom, since I was afraid to use my own phone in case it was being tracked. Tony seemed okay with the situation at this point, but Julia, Barnabas and I were still trying to find a way to get home, even if where we were seemed fairly safe. I don’t know if home for them was Maine, but home for me was still PEI, and since they’re not that far from each other, we were trying to find a way to go home together.
The last thing I remember, Julia, Barnabas and I were talking about going home in a small room. Barnabas had just gotten away from Tony, who’d wanted him to play a virtual bike stunt game with him. Without warning, two men burst into the room and threw some kind of explosive
device at us, saying that they’d finally found us. As we were thinking about what to do, I woke up.