I know I said before that I was done writing about my hospital experience, but I realized since then that I’ve written about the pancreatitis attack that led to my hospitalization, and the roommates I had while in the hospital, and some numeric totals regarding my stay, but nothing about the hospital experience itself. I recently looked over my blog posts about my visit to the UK last summer, and thought that I should do the same for my hospital stay. Before you run away screaming, don’t worry, I won’t be going through day by day and there are some details I will be leaving out. Some things, well, you just don’t need (or likely want) to know about. There’s lots of stuff about my stay that I will likely forget in the near future, so I’ve written about it here for
millions of internet users around the world to enjoy for years to come posterity. It wasn’t until after I started writing this article that I realized how much information there was to convey (read: it got really frickin’ long), so I’ve broken it into three parts: pre-surgery (this article), surgery and post-surgery, and recovery at home.
The Button and the Balls
I went into the hospital on February 5, 2010. I’ve already written about that day, so I won’t go into those details again. The next week or so is a blur. Gail suggested I keep a little diary to record changes or problems or questions or whatever since I was in a fog much of the time, and she kept a separate one as well. The first entry in my journal is Feb 11, and most of the first few entries are about painkillers. I remember having to call for the nurse whenever I needed painkiller, and a few times I had to press the nurse call button a few times before she would come. I was in a fair bit of pain at that point, so every minute it took her was an eternity. At one point I got frustrated waiting, so I started writing down the time whenever I pressed the button and the time at which I finally got the shot. When you press the nurse call button, a light goes on above your door in the hallway as well as in the nurses’ station, but what I didn’t realize at the time was that pressing it again does nothing. Once you’ve pressed the button, there is no point in pressing it again until it’s been cancelled. Sometimes it took 15-20 minutes before the nurse actually arrived, but whether I pressed the button once or fifteen times was irrelevant. Looking over my diary, there were times when I didn’t receive the shot of painkiller until 30-45 minutes after first pressing the button. On February 12, I started on long-lasting dilaudid – I’d get one 6 mg pill at 8am and another at 8pm, and that would be it. If I had excessive (“breakthrough”) pain I could ask for a shot, but that only happened a few times – other than that, the long-lasting stuff worked really well.
I had an IV for medication the entire time I was hospitalized. (In fact, for a day or two after my surgery, I had so much stuff going into me that I needed two IV poles because all the stuff didn’t fit on one.) For the first couple of weeks, I was also on oxygen since there was a large collection of fluid below my lungs (a “pleural effusion“) that made it painful to take a deep breath, and so my blood didn’t have as much oxygen in it as it should have. They gave me a thing called an incentive spirometer, which consisted of three parallel plastic cylinders, each containing a ball. There was a plastic tube coming out of one of them. I was supposed to put the tube in my mouth and suck in like a straw – if I sucked in hard enough, each of the three balls would rise to the top of its cylinder. When I first got this device I could raise the first ball all the way, and the second one would move a little but the third one didn’t budge. The fluid under my lungs gradually went away and as it did, I was able to move the second and third balls, and my oxygen saturation level started to grow again. By February 17th I could raise all three balls to the top and hold them there for half a second, and by about the 20th, I was able to remove the oxygen tubes completely.
The nurses kept asking me when I peed and how much, so I started recording it in my diary. So I have a record of exactly when I went and how much there was for every day for most of February and half of March. No, I’m not going to include that information here, but email me if you’re interested. Actually, don’t.
I had a feeding tube that went up my nose, then down my throat and directly to my small intestine, thus bypassing my stomach. Since my stomach was not being used, my pancreas was also idle. The idea here was to allow my pancreas to heal by not using it. It’s amazing what you get used to – what you consider “normal”. For the next four weeks, I had a tube up my nose 24/7 and that was “normal”. When it was time for me to have a shower, I’d ask the nurse to see if the shower was available, and to disconnect me from the feed pump and IV. The tube was still in my nose, but it could be disconnected from the feed pump and had a little valve that could be closed. Then I’d put on my shower slippers (plastic ones, as opposed to my fuzzy slippers which were more comfortable) and make my way to the shower room. The first time I did this, an orderly named Lou, who was the one of the friendliest and most helpful people I met at Grand River, helped me with everything but the actual shower which I could do myself. After that first one, Gail would usually be there to help me, though I think I managed a shower or two on my own by mid-March. The shower room had a single stall and a cabinet with towels, gowns, and pants, plus various soaps and shampoos. After my shower, I’d go back to my room where I’d remove the tape holding the feeding tube to my cheek, shave (all the while holding the feeding tube in one hand so there was no chance it got pulled out), and then call for the nurse to come back and tape the tube to my cheek again and reconnect the feed pump and IV. This whole process took about an hour, and none of it seemed weird to me. At the time, this was what “normal” was.
I went through a bunch of doctors at this point. My first couple were from the ER, and then I was passed off to the gastrointestinal group. This group rotated once a week, so I’d have one doctor for a week, and then on Friday they’d switch and I’d have a new doctor. The doctors were Dr. Ismaili, Dr. Golubov, Dr. Meghji, Dr. Sharma, and Dr. Bissonnette. One of them introduced me to Dr. Pace, who specializes in surgery involving the liver, pancreas, and gallbladder. Dr. Pace eventually became my surgeon. I was also introduced to Dr. Needham-Nethercott, who I believe was head of the ICU. She put me on an “ICU watch” for a while, which meant that they were paying close attention to me (they checked on me every four hours), and if my condition deteriorated in any way they’d have me moved to the ICU immediately. She also said that whenever she hears “pancreatitis” she basically assumes that the patient will be in the ICU for months. I never had to go to the ICU, so I was pretty lucky. I was told that the fact that I was relatively young (40 last summer) and in pretty good physical shape really helped. I have been exercising a couple of times a week for years, and I started running last summer too – who knew that getting lots of exercise could help save your life?
For a while I wasn’t allowed anything to eat or drink – not even water. If I was dry I could suck on ice chips, but I had to spit the water out rather than swallowing it. Eventually I was allowed water to drink and then was put on a “clear fluids” diet. This consisted of water, juice (apple, orange, or cranberry), Jell-O (yellow, orange, or red), and coffee or tea (no milk or cream). At lunch and dinner I also got chicken or beef broth and a can of Schweppes ginger ale. I eventually requested no broth (didn’t like it) and no ginger ale (the carbonation didn’t agree with me). On Valentine’s Day, I was given a banana popsicle instead of Jell-O and thought it was the best thing I’d ever tasted. I assumed at the time that this was a Valentine’s Day treat, but I got popsicles now and again after that and they were always welcome. There was a fridge that patients could use, so Gail bought some popsicles for me and put them in the freezer, so I could have them whenever I wanted, as long as I had the energy to walk down there to get one. The room with the fridge was maybe 100 feet from my room, but some days it may as well have been five miles away. I stayed on the clear fluids diet until March 9, when I began the “full fluids” diet – still nothing solid, but closer. The first day I had yogurt and Cream of Wheat with milk for breakfast, and cream of chicken soup, yogurt, and chocolate pudding for lunch. For dinner, I had cream of broccoli soup with apple sauce, but I was actually still too full from lunch to eat any dinner. This was a little foreshadowing of how it would be when I came home in early April – my stomach had shrunk so much that when Gail made me 2 scrambled eggs for breakfast one morning, I couldn’t finish them. While I was on full fluids, Gail occasionally went down to the Tim Horton’s in the lobby and got me some chicken soup, though I had to strain the chunks of vegetables and chicken out first. I was on the full fluids diet for exactly one week. After that was my surgery, and then I was back on ice-chips-but-spit-the-water-out. I went back onto clear fluids a week later, but I didn’t have anything solid (i.e. that I could actually chew) until I came home on April 2.
A typical day would begin around 6:00am when I would be awakened for my morning shots. A nurse would also draw blood for tests at this time – not every day, but a couple of days a week. I usually tried to go back to sleep until about 7:00-7:30. The nurses worked 12 hour shifts, 7:00 to 7:00, and usually the new nurse would come in by 8:00 to give me my painkiller and if I hadn’t met her before, introduce herself. (I’m going to use feminine pronouns for nurses although I did have one male nurse for one shift.) I’d usually have the same nurse for two day shifts followed by two night shifts, so I’d have one nurse, say, Monday and Tuesday during the day, and then Wednesday and Thursday nights. Sometimes they’d switch shifts or whatever but that was usually the schedule. Breakfast would come around 8:00, and Gail would normally arrive between 9:00 and 10:00 after dropping the boys off at school. If my parents or Gail’s were staying at our house, she’d sometimes ask them to drop the boys off so she could leave earlier. If Gail had to pick the boys up from school, she’d leave around 3:00. Sometimes she’d come back with the boys for a few hours in the evening, and then leave around 8:00 to get them home to bed.
I need to say a few things about Gail here. The entire two months I was in the hospital, there were only two days that I didn’t see her. There were a number of days that she drove in and back twice – and we’re talking about a 45-minute drive each way. I only had one procedure done that I can think of that she wasn’t there for, and that one was scheduled at 7:30am on a day where nobody else was available to take the kids to school. I think she cried in front of me maybe twice the whole time – hell, I cried in front of her way more often than that. Not that she didn’t cry at all, but (I found out later) she made a serious effort not to do it where I could see her. She was essentially a single parent for two months, and came to the hospital just about every day, all the while (mostly) keeping up with her full-time job at EDS. Oh, and she was also chair of the school council and a Beaver leader. She was an absolute rock, and I don’t know how I would have gotten through this whole nightmare without her. Sweetheart, I tell you this every day, but it bears repeating ad infinitum: I love you more than you will ever know.
Anyway, back to the routine. Lunch came around 12:30-1:00, and dinner around 6:00. If I was going to have a shower, I usually tried for mid-afternoon, since the shower was usually available then. I usually had a 45-minute nap in the morning and a longer one (60-90 minutes) in the early afternoon. The lengths of the naps was not scheduled or anything, that’s just how long they usually lasted. If I had no procedures (ultrasounds, CT scans, stuff like that) scheduled, the rest of the day was spent goofing around on the internet, watching TV, watching movies on my laptop, checking work email (which I read once or twice a week but rarely responded to), or reading. I didn’t read much during the first few weeks or so because I couldn’t concentrate long enough, but eventually I was able to read more. I read By The Time You Read This by Giles Blunt, Pirate Latitudes by Michael Crichton, Open: An Autobiography by Andre Agassi, Extreme Vinyl Cafe by Stuart McLean, and some of the stories in Just After Sunset by Stephen King. I had a number of visitors over my stay, and a few of them brought me magazines to read. One brought me a puzzle book to keep my mind working as well as an external hard drive filled with
TV shows and movies public domain videos copied with the creator’s express written permission (thanks John!), another lent me her PSP with some games (thanks Dove!), and another lent me seasons 1 and 2 of Star Trek: Voyager on DVD (thanks Ian!) so I had those to keep me occupied as well. Gail didn’t take any vacation time – she brought her laptop to the hospital almost every day and worked. HP was very flexible – I’m sure they knew that Gail wasn’t likely putting in her full 40 hours every week, but they also knew why not, and cut her a lot of slack. We paid $20/week each for wireless internet access, but it was worth it so that Gail could be there with me. After dinner was more of the same – internet, movies, TV, books – until bedtime, usually 10:30-11:00. I had the occasional needle through the day (don’t remember them all – there was heparin four times a day to prevent blood clots, and another one specifically for the pancreas, though I don’t remember the name), and sometimes I had shots at midnight or 3:00am as well.
A535, TV, and PICC
I didn’t sleep well for the first week or so, since the painkillers I was getting at that point would only last a few hours. Once I was on the longer-lasting stuff, I could sleep a little longer, but I was getting lots of fluids via IV, so I had to go to the bathroom a couple of times a night. Sleeping for four hours straight was unusually long. By the beginning of March, my back was getting sore from being in bed all the time, so Gail bought me a memory foam pad. This helped immensely. We asked if I could use Rub A535 on my back at bedtime, and we were told that since it wasn’t ordered by the doctor, the nurse couldn’t give me any, but there was no reason we couldn’t put it on ourselves. So Gail brought me some and I put it on, and that helped too.
At one point, my sister suggested that if I was having trouble sleeping, I could ask the doctor for some Ativan, which was a safe drug that would help me sleep. It’s not a sleep aid per se, it’s used to reduce anxiety, but the net result ends up being better sleep. That evening I asked my nurse about it, but I forgot the name of the drug. I knew it began with ‘a’ so I started guessing names and eventually came up with Ambien, which I had probably only heard of thanks to online pharmacy spam. The nurse immediately said “I am not giving you Ambien.” Since Trudy told me that the drug was pretty much benign (though Wikipedia says it can be addictive), the nurse’s strong reaction told me that I had gotten the name wrong. The nurse said that Ambien is an anti-insomnia drug that you can’t get in Canada, but a few years before when she was working in the US, she saw patients who had bad reactions to Ambien, causing psychotic episodes. After hearing this, I wholeheartedly agreed with her decision not to give me any. She eventually figured out what drug I actually meant and gave me some. It worked pretty well, and I took it a couple more times over the remainder of my stay.
From what I’ve read, if we lived in the USA and didn’t have insurance, two months in the hospital plus the surgery and medications and medical imaging and all that stuff would have cost many tens of thousands of dollars. Because we live in Canada, all I had to pay for was the TV and phone in my room. Well, that and $40 for the ambulance ride, but my work insurance reimbursed me for that. The phone was about $15/week, but the TV was crazy expensive. It cost about $90/week, which I didn’t really realize until late February or early March, at which point I cancelled it. Luckily this happened after the Olympics ended, so I was able to watch a lot of the Games (including all of the men’s hockey games involving Team Canada) from my room. There was also a TV in the lounge down the hall, so a couple of times Gail and the boys and I would go down there and watch skiing or snowboarding or something. We watched the first two periods of the gold medal hockey game from there, then Gail and the boys had to go home. I watched the third period and overtime (Sidney Crosby baby!) from my room. The majority of my TV viewing was sports – SportsCentre during breakfast, Olympics, and Leafs games after the Olympics ended (boy, going from watching Team Canada to watching the Leafs was a bit of a letdown). I also watched Star Trek: TNG, Deep Space Nine, or Voyager whenever they were on.
On March 4th, I vomited and my feeding tube got dislodged, so they removed it. A new tube was inserted the next afternoon but after another day I barfed that one up as well. I had had the feeding tube in for almost a month at this point, and my throat was sufficiently sore and irritated that they decided not to put another one in. On the 10th, I had a PICC (peripherally inserted central catheter) line put in. This is a very thin tube that went into a vein in my right arm, up my arm to my shoulder, then around below my neck and down almost to my heart. The PICC line was used primarily for TPN (total parenteral nutrition), which means that I was being fed intravenously. The feeding tube had basically been putting stuff equivalent to pre-digested food directly into my small intestine, which would then absorb the nutrients. With the PICC line, they pushed the nutrients directly into my bloodstream. The TPN was a whitish liquid, so it looked like I had a big bag of milk hanging from my IV pole. The PICC line was also useful for drawing blood, so when that needed to be done, they would just disconnect the food tube, flush the line with some saline, then draw the blood out. This was slower than the standard needle method, but didn’t require me to get poked like before. It also caused one pretty scary moment. Part of the pancreas’s job is to create insulin, so if the part of my pancreas that creates insulin was damaged, I might have ended up diabetic. And not the relatively easy Type 2 treat-it-with-medication diabetes either – this would be full blown Type 1 you-need-multiple-insulin-shots-every-day diabetes. One day, a standard blood test came back with an extremely high glucose value. I don’t know the units of measure, but the “normal” sugar values are below 7. Gail (a Type 2 diabetic) has seen her numbers up around 10 or so (before she was on medication), and that’s not bad. A high value would be around 16. This value was 33. The nurse told me that this definitely indicated that I was diabetic but before this news could really sink in, they had drawn more blood and done more tests and found that the 33 was an anomaly – probably some of the TPN stuff had gotten mixed with the blood that was extracted from the PICC line. The next few tests showed a blood sugar level of around 8.5. Kinda high but no diabetes.
Shave and a haircut – to bits
In early March, Gail bought a hair trimming kit because my hair was getting a little long and hard to keep clean. We put some towels on the floor of the bathroom and I knelt down over the sink and she gave me a buzz cut. We had a bit of an accident though – she took the trimmer off to do my sideburns, and then realized that she hadn’t finished the back yet so she went to do that. After one stroke she said “oops” and then put the trimmer back on. For the next few weeks I had fairly short hair with one rectangle of very short hair at the back. Gail felt pretty bad about it but I thought it was kind of funny. Most of the time I was in bed or sitting facing the door so most people didn’t see it, though the occasional nurse asked about it. The rest of the time I just figured one of two things: (1) I wasn’t looking my best anyway, and (2) I was walking around a hospital wearing a gown and pushing an IV pole, so people who saw the swipe at the back of my head would think that I had just had brain surgery.
From the day I got to the hospital, we kept asking when I could go home. When it became clear that I would need to stay in the hospital for a while longer, we started asking if it were possible for me to be transferred to a hospital closer to home, preferably MacMaster or St. Joe’s in Hamilton. My doctors could see no reason why not. I have absolutely no complaints about the care I was given at Grand River; we were looking into the transfer purely for convenience. My sister, who is a behavioural therapist, talked to some of her many friends and colleagues in the healthcare industry to find out who I should be seeing in Hamilton. She came up with a doctor at Mac named Dr. Marcaccio, so we gave that name to my doctor. He called Mac and even spoke directly to Dr. Marcaccio, but Mac’s policy is that they won’t accept patient transfers unless there is a solid medical reason for it. If there was something that they could do for me at Mac that they couldn’t do at Grand River, they’d be happy to approve the transfer, but they wouldn’t do it just for our convenience. I remember thinking later that I was lucky that this didn’t happen when we were in France or the UK or somewhere much further from home than Kitchener. We asked a couple more times but the answer was always the same and we eventually gave up.
In our next exciting episode of the “Hospital” series: surgery and post-surgery.