Not again!!

Last Monday started out like an ordinary day. It was a new day, a new week and a new month. I was excited to get up in my recliner so that I could get to work on my computer. I had several emails to catch up on, and I also wanted to update my personal journal as well as make a new blog post. Once I got up in my recliner, however, I noticed a dull ache in my lower back on the left side. I wasn't sure what was causing the pain, but I thought maybe some of my clothing was too tight or something like that. The pain got worse and worse as the day progressed, and I didn't feel like doing much of anything, which is highly unusual for me because I like spending all day on my computer.

As the pain increased, I also began feeling like I couldn't draw a deep enough breath. I'm not able to breathe on my own, but I've been on a diaphragm breathing stimulator for the past three years, and this has enabled me to stay off of a mechanical ventilator. As the day progressed, I began feeling more and more sleepy, and I knew that I was starting to repeat myself and say things that didn't really make sense. My mom said that she thought she should take me to the emergency room, and I agreed. I hate going to the hospital, but I could tell that something was wrong with me, although I wasn't sure what it was. My mom started getting things together and she called my younger sister Chandra at work and asked her if she could come home a couple of hours early.

When Chandra arrived home about 30 minutes later I was all ready to go. It was about 3 pm, and my mom and sister Chandra took me to the emergency room at St. Anthony's Hospital and we got checked in. The emergency room was absolutely packed, especially with lots of people carrying around barf basins! I waited in the waiting room for more than three hours, and the infection that was festering inside my body started taking over. I was trying so hard to mentally stay with it, but then I got to a point where I was so sick that I just had to mentally give in to the infection. I kept asking the same questions over and over again. I wasn't aware that I was doing this because I couldn't remember if I'd actually asked the question, or if I'd just thought it in my head.

Here's another example of how downhill I was going. I was drinking a milkshake since it had been about nine hours since I'd eaten anything. I was able to suck the milkshake up through the straw, but then I would actually fall asleep before I could swallow it, and it would run out of my mouth onto my shirt. That's how sick I was, I couldn't even swallow my milkshake! My mom knew that I was having a definite change in mental status, so she went to the front desk and told the receptionist that I was starting to act the way that I've acted in the past when I've been septic. (That's when an infection gets into your bloodstream, and if you aren't treated quickly it can be a life or death situation.) When my vital signs were retaken it was clear just how much I had deteriorated in the three hours that I'd been waiting. It was clear that I was seriously sick and they got me in to the next available room.

By this time I was so delirious that I don't remember much of anything. My blood pressure had plummeted dangerously low, something like 50/30. I'm not sure when the doctors found out that a kidney stone was what was causing me to be so sick, but when I heard those two horrible words, "kidney stones," I knew that things were not good. A kidney stone had entered my left ureter, so my left kidney wasn't draining at all. Ever since I've been paralyzed (6+ years) I've had reoccurring problems with kidney stones since my kidneys don't drain as efficiently anymore since I can't stand up.

To help make this long story shorter, I'll just try to talk about the most relevant things that happened last Monday. When they found out that my left kidney wasn't draining, I had to have a procedure to drain the kidney. I'm not sure what time of night it was when they took me away to get this procedure done, but I was put on an operating table and I was turned onto my right side so that the doctor had access to my left kidney.

Because my blood pressure was so low it was too dangerous to use anesthesia, so I was put under conscious sedation. Conscious sedation is basically where you're given a little something to make you foggy and fuzzy, but you're not unconscious. I cannot express how badly the procedure hurt! The doctor put a nephrostomy tube in my back, and the best way to describe what was done is that they drilled through my back to get to my kidney. Then a tube was inserted into my kidney to drain everything out of it. Then they secured the tube in my kidney with a few sutures, and now I will have this drain in my back until after I have surgery in a few weeks.

Since I was conscious during the procedure, I felt everything! I can't put into words how painful this procedure was -- I've never been through anything more physically painful than this procedure. I kept saying "ow" and "that hurts" but all they would say to me is, "I know it hurts." I was so relieved when it was over!

I was still delirious after my procedure, and when I finally woke up I was in the ICU. I don't remember this, but my mom said that I kept calling her name over and over again. I didn't know I was calling her over and over again, but when I woke up I couldn't see her and I didn't know where she was. Actually, I woke up burning hot, horribly parched and very confused. I knew that I was at the hospital, but I didn't know where in the hospital and I didn't know how much time had passed, if it were night or day, etc.

When I was coherent enough to form logical thoughts and questions again, I couldn't believe that I was having more kidney stone related problems. I'd just been to my urologist three months previously, and he said that although I had a few small stones in each kidney, they hadn't gotten any bigger and no new stones had formed. So although I shouldn't have been surprised that I had more kidney stones, I actually was surprised. I remember thinking, "No, not again!!"

I was feeling better and more like myself on Tuesday morning and I started to ask, "When can I go home?" Sadly, it wasn't this easy and I resigned myself that I would have to be in the hospital for several days.

I didn't bounce back as quickly as I have in the past, and this was very frustrating. I was put on a ventilator because I wasn't getting enough air from just being on my diaphragm stimulator like I usually am. Every time I tried to get off of the ventilator and just use my diaphragm stimulator, I started feeling like I wasn't getting enough oxygen to my brain, and a horrible headache ensued. For the next four days I tried turning off the ventilator and tried breathing with my diaphragm stimulator, but every time I tried I just couldn't do it and this was so frustrating because I knew I had to be off of the ventilator permanently before I could even think about going home. I've gone through the same thing in the past, and it was no problem to get off the ventilator, so I didn't know what was different this time. Thankfully on Saturday afternoon I turned a corner and I was finally able to be off of the ventilator without feeling like I wasn't getting enough air. Finally!! (The reason it was so hard for me to get off of the ventilator was because the infection was so strong and my body had gotten so weak.)

On Monday morning when my pulmonologist made his rounds I told him that I was ready to go home and he actually agreed. Now I just needed to get all of my other doctors on board, which wasn't too difficult to do. The hospital is the absolute worst place a patient can be when they are trying to recover since there is such a high risk of acquiring a secondary infection because of all the germs in the hospital.

So here I am. It's Wednesday afternoon and I've been home for almost two days. I have to be on IV antibiotics for two more weeks to make sure the infection is completely gone. Once the infection is cleared up I will have surgery to remove all of the kidney stones from my kidneys. That surgery will take place in about two or three weeks. I'm really not looking forward to the thought of having another surgery and hospital stay, but at least the kidney stones will be taken care of. It's too bad that it's not a one step fix! Unfortunately, kidney stones and other urological related problems are going to be an inevitable recurring thing for me to deal with since I have a spinal cord injury.

This post kind of tells the story of what happened last week. In another post this week I'll write about some of my feelings about being in the hospital and what it's like to be a patient. I'm so glad to be feeling better and most importantly, I'm glad to be home!