Hospital: Recovery at home

This article is the third of a three-part series on my hospital experiences. Part one is called A day in the life, and part two is Surgery and post-surgery. At the end of our last instalment, I had just been discharged from the hospital after eight weeks.

Coming Home

I was discharged on Good Friday (which my then-7-year-old son Nicky called "Awesome Friday" because daddy came home). The Easter weekend was the warmest of the year to that point, and may have been the warmest Easter weekend in many years. I sat out on my deck with my dad for a little while – no jacket, no sweater, no long pants, just a t-shirt and shorts. We left the windows open all weekend. It was the most amazing weekend I can remember.

Both my energy level and my appetite were very low when I came home. I spent a lot of time lying down on the couch over the next several weeks. My weight was 151 pounds when I was discharged, 27 pounds less than I was before this all started. I hadn't eaten solid food in eight weeks, so my stomach shrunk quite a bit. My normal sized meals were way too much food, and there were plenty of meals when Nicky would eat more than I would. Trying to get enough calories into me to give me more energy (and stop my weight loss) was quite difficult. I had to eat every hour or two because the meals I was eating were so small. We bought things like Boost drink boxes, some meal replacement bars, and Ensure Plus. Boost was OK but I got tired of the taste pretty quickly. The meal replacement bars were pretty good, but were so filling that it took me an hour just to eat one. The Ensure was pretty good and has about 350 calories per bottle. One of those by itself would fill me up – and I mean fill. After finishing one, I felt like I'd just eaten a 20-oz steak in ten minutes. I kept a little journal of everything I ate along with how many calories it had. For at least a couple of weeks, I was eating between 1100 and 1500 calories a day, but there were days where I ate less than 1000 calories. Just for comparison, a Big Mac and a medium fries (with no drink!) is 920 calories. We went to McDonalds for dinner a week or two after I was home and bought three happy meals (with a boy toy!) instead of the usual two – and I couldn't finish mine. I was told I needed to bump my intake up to about 2300 calories a day just to maintain, and more if I wanted to gain. This seemed like a completely insurmountable task at the time, and I became quite frustrated. I was eating at least six meals and snacks a day and was totally (sometimes uncomfortably) full after every one, and then I was told that I had to more or less double my food intake.

I lost about ten pounds in two weeks at home, down to a low of 141.5 pounds. I was looking pretty gaunt. My arms and legs were like sticks and my face was sunken in as well. I went to see a nutritionist and she gave me a pamphlet on increasing your caloric intake. The crux of this document was "do everything Weight Watchers tells you not to do." Put real whipped cream on your dessert, hot chocolate, or milkshakes. Use cream instead of milk. Drink homogenized milk instead of 1% or skim. Use sour cream or mayonnaise. Add sugar to stuff. Add butter to stuff. Avoid foods labelled "light", "calorie-reduced", or "low calorie". This is many people's idea of "heaven" and I thought it was pretty cool as well. A couple of times I stopped at Tim Horton's on my way somewhere to get an Iced Capp, which I really like but generally try to avoid because they're filled with calories (unlike the donuts that I don't make so much of an effort to avoid). I managed to convince myself that I needed the Iced Capps for medicinal purposes, as part of my recovery. Even given my free reign to eat whatever I wanted (she even told me to avoid fruits and vegetables because they were filling but had minimal calories – I called them "empty nutrition"), it took me ten weeks to gain back the ten pounds – and then I only had another fifteen to go before I was at my goal weight. Before this all started, I could have gained the ten pounds in five days at Fern. I was a little concerned that once I started gaining weight I wouldn't be able to stop. Luckily this has proven not to be the case – I've gained back all the weight I want to and I've maintained roughly the same weight (low 170's) for a month or so now.

Some days I ate fairly normal meals, although much smaller than normal – a typical day might have looked like cereal for breakfast, yogurt as a mid-morning snack, a chicken wrap for lunch, a fruit cup for afternoon snack, chicken or beef casserole for dinner, and an Ensure before bed. That would have been about 1100-1200 calories. But there were other days where I just didn't feel like eating so I basically forced myself to have an Ensure in order to get calories. There was one day where my entire food intake was a bowl of cereal in the morning and four Ensure's the rest of the day. Some of my favourite meals at the time included bruschetta pizza (a tortilla with bruschetta on top and maybe some chicken (no cheese), broiled in the oven for a few minutes), satay noodles (Gail made a big batch and it would last me several days), and toast with peanut butter because it had lots of protein. Gail really pushed the protein hard because it helps to rebuild muscle. Besides the handy pamphlet I mentioned before, the nutritionist gave me some more specific ideas for increasing my caloric intake too. I started eating lots of Quaker Harvest Crunch (which I've always loved) and I bought a big Costco-sized jar of mixed nuts – a quarter-cup of nuts has 200 calories so that was a good snack option.

I knew I needed to keep moving to try to build up my stamina, energy levels, and muscles but it wasn't always easy. For a while my exercise regimen was to get up off the couch, walk one lap around the main floor of the house, and then go lie back down again. After a few days I felt a little stronger, so I would walk up and down the stairs five times (sometimes four if I was extra tired) and then go lie back down. My goal was to get up and do this every hour, but that didn't happen – I was lucky if I did it three times in a day. After another week or so, I wanted to get outside so I started walking down the sidewalk a couple of houses and back (and then go lie back down). Each day I tried to walk a house or two further until after a couple of weeks I was able to walk all the way around the block (most of 1 km), and then go lie back down. (Are you seeing a common theme here? I spent a lot of time on the couch.) Most of the walking I did was hunched over because of the pressure on my incision. It was mostly healed on the outside, but took at least another month or two before the pressure and pain stopped inside. I had to make a conscious effort to stand up straight, and sometimes I just couldn't do it.

I was exceptionally weak as well. I drank a lot of Gatorade and a couple of times, I had to get Ryan to open the bottle for me. I remember Gail deciding to mow the lawn for the first time in the spring (a job she absolutely hated). We have a battery-powered mower, and the (very heavy) battery was downstairs in the workshop all winter. I went to get it for her and couldn't lift it – she had to come down and get it. She mowed the lawn for about a month before I was strong enough to do it. Even trying to do things like put clean dishes away was a far bigger chore than it used to be – I would usually pile all the plates up on the counter and then lift the whole pile into the cupboard at once, but I found to my surprise that you need stomach muscles to do that. I had to put the plates and bowls away one or maybe two at a time for a while.

Despite the fact that my weight was the lowest it had been in probably twenty years, my stomach was quite distended and even now, months later, it still is somewhat. When I went to see my family doctor, I mentioned that I was starting to gain weight, but it looked like it was all collecting in one place. With the rest of my body being so thin, the protruding stomach made me look several months pregnant. She said that it was distension and that I didn't have enough body fat to have a beer gut. She assured me that it would likely go away in time. A friend of mine who's had a C-section told me from experience that "the shelf" may never go away. It does seem smaller now, but I'm not sure if that's because it's shrinking or if the rest of my body has grown and made it seem smaller.

False Alarms

In the middle of May, I started feeling some pain in my right pelvis area. Sitting or lying down was fine, but I started walking with a limp because putting weight on my right leg was painful. I called the doctor and he had me come in for a CT scan, which found some fluid build-up in my pelvis. The pseudo-cyst that they drained back in March was so big (had to be, to hold four litres of stuff) that it extended from my upper abdominal area all the way down into my pelvis, and I guess the rest of the fluid that they couldn't drain during surgery, along with some all-new fluid, had collected in the lower part of the pseudo-cyst. The doctor was hoping it would just drain away naturally or be re-absorbed, but that wasn't happening so he said I needed another drain put in. It was a simple procedure though – I'd go in Friday morning (May 28th) and then be home Friday afternoon. Of course, I assumed that he meant the same Friday but that's not the way it worked out. They did a routine blood test before the procedure and found that my blood clotting numbers were too high for them to put the drain in. They wanted the number to be 1.2 or below, but they could probably be convinced to do the procedure at 1.3. My number was 1.5 so they re-admitted me and started giving me fresh frozen plasma to try to bring that number down. After 3 units, the number was down to 1.4. They gave me some vitamin K and two more units, but the number went back up to 1.5. After two more units, I was up to 1.6. They were as puzzled as I was, but they gave me more vitamin K, four more units of plasma, and at least three units of blood as well (type A+ if you're curious). All of these units were on Friday, Saturday, and Sunday and by Monday, Dr. Pace had had enough. He told the radiologist to just go ahead and do the procedure, which he did with no problems or complications. They kept me in until the next Friday (June 4) just to be sure everything was OK, and then I went home again. I had a nurse come in every other day to check the drain and change the dressings, and she taught me how to do most of it myself. I had to disconnect the drain bag, attach a syringe pre-filled with saline to the drain and inject it, then pull up on the syringe plunger to pull out as much fluid as I could. This helped to keep the drain from getting clogged. Once I did that two or three times (depending on how much I pulled out), I would reattach the bag.

A week or so after getting this drain, I hit yet another complication – the valve that connected to the bag cracked and was leaking. I called the nurse but she didn't have any parts that fit and suggested I go to the ER at St. Joseph's in Hamilton, to avoid driving to Kitchener. I did that but St. Joe's uses a different supplier for these types of things, so the ones they had didn't fit. I ended up getting Gail to drive me to Kitchener where we explained the situation to a radiology nurse. She went and got me a replacement bag and connecting hose and we were good to go once again.

Dr. Pace took the drain out on Wednesday June 16th and everything seemed fine – for about three days. On the Saturday I started feeling some pain in my pelvis again and on Sunday morning it was worse, so we spent the bulk of Father's Day in the ER at Grand River. After five and a half hours, I was sent home with an appointment to come back the next day for an ultrasound. The ultrasound showed nothing unusual so they just chalked it up to residual pain and fluid build-up from the drain removal, and I should come back if it didn't get better. After another couple of days it did start to feel better, so that was a false alarm. But a month later, I had another. In mid-to-late July I started feeling pain in my abdomen, just above the scar, on the right side. Back to the ER I went, this time to St. Joe's. I was there all day and had another ultrasound, which again showed nothing. They didn't know what to tell me, but I was scheduled for a CT scan in Kitchener the next day so I figured they'd find the problem. The CT also showed nothing unusual, but Dr. Pace said that many of my internal organs had hardened as a result of the pancreatitis and the surgery. As they soften up again some of them can stick together temporarily so I can have phantom aches and pains all over the place, and that's probably what this was. Sure enough, the pain went away a day or two later and never came back.

Back To The Grind

Sybase was great throughout this whole thing. I got emails from HR and my boss asking about my status and when I would be returning, but there was never any pressure to come back quickly. I asked about setting up a return-to-work schedule and they said that whatever schedule my doctor is OK with is fine with them, including working part-time to begin with and working from home whenever I needed to. They were very flexible. My boss Mark and the VP of Engineering Dave were both very supportive as well, and both said that they wanted me back as soon as I was ready, but again, with no pressure. My co-workers were fantastic. I had hospital visits from a number of people, phone calls, and countless emails offering support. When I returned home, they sent me a gift box containing a bunch of stuff donated by the team including a Wii game and two Wii Motion Plus adaptors (to help me stay active and get my energy back), gift cards from both Tim Horton's and Subway, and a get well soon card signed by a whole bunch of people. When I returned to work part time (June 21), I found my office packed with balloons and a big welcome back "card" taped to my door with at least 30 signatures on it. Not only do we have a bunch of really talented engineers, writers, and managers, but they're just great people as well.

I worked part time (M-F mornings) for two weeks before returning full-time on July 5. I went into the office only once that first week, and worked from home the other 4 days. The next few weeks were split 3-2 or 2-3, and by mid-August I was back to my regular 4 days in the office and one at home.

Nurses are Good People

I can't count the number of nurses that I dealt with over this whole thing but if this experience taught me anything it's that nurses have one hell of a tough job. Twelve hour shifts (sometimes overnight), giving patients needles, drawing blood, inserting IVs, dealing with zillions of different types of medications, bathing and cleaning up after patients, inserting things into places many people don't generally like having things inserted, changing unbelievably smelly colostomy bags (one of my roommates had one – I tried to time going for a walk when the nurse came to visit him just in case she had to change it), and that's just the medical stuff. I'm sure most patients are fine but some take nurses for granted, think of them as personal servants, are rude and surly, and some even get verbally and physically abusive. I know there were a number of nurses that were yelled at by patients (at least a couple of my roommates) for doing nothing more than their job. Sometimes it's not the patient that's the problem, it's the patient's family, particularly if the patient is elderly. I'm sure there are many nurses who have been yelled at by someone's wife or son because they think the nurse isn't doing their job properly – and it ain't the wife or son that's there changing a soiled bed at 3:30am. And of course the nurses aren't allowed to tell their patients off when they get this way, though I'm sure they'd like to now and again. Maybe nurses should get one STFU per month with no repercussions. More than that and they'll get in trouble, but they should get one freebie. Of course, nurses are dealing with people during a very difficult time in their lives, so it's not unlikely that they're going to get treated badly by some of them and I'm sure they realize that. That doesn't make it right, nor does it make it easier to deal with for the nurses.

I imagine the worst part of being a nurse is treating a patient with a terminal illness or injury. When you've dedicated your life to helping sick people, and spent years in school and on the job learning how, it must be especially frustrating when you have a patient that you know will not survive and all you can do is try to minimize their pain until the end.

I had a bunch of great nurses, but I think nurses can sometimes be like system administrators - if you have a great one, you don't always notice them. They do what they need to do and don't get in your way. But when you have a bad one, you will definitely notice. I remember a few names of nurses I liked: Terri, Monika, Brenda, Andrea, and Sarah. I had one nurse (Nebo) from Zimbabwe who spoke Zulu, and I asked her how to say "thank you" in Zulu. Luckily she wrote it in my book: Ngiyabonga. Another nurse (Andrea) was a friend of a co-worker of mine which we discovered when she came to visit me. Another (Grace) knew I was a "computer guy" so when she saw me playing around on the internet, she told me that she was planning a vacation to Poland and asked if I could find cheap flights for her from Toronto to either Warsaw or Szczecin. I had nothing better to do, so I went on expedia.ca and found her one through Frankfurt to Warsaw, and then a commuter flight from Warsaw to Szczecin. I didn't ask why she figured I would get better search results than she could.

Of all the nurses I had, I only had one that I was really unhappy with. She was only assigned to me a couple of times, but she wasn't overly friendly and did a few things that weren't very sensitive to her patients, and she was downright rude to one of my roommates. The "not very sensitive" thing was kind of silly but annoying – she came into my room at 7:00am, right at shift change, to introduce herself and give me shots. The first thing she did was turn my overhead light on, so I was awakened rather suddenly to a very bright room. She wrote her name and the date on the whiteboard on my wall and then remembered that she hadn't done that in the previous couple of rooms so she immediately left to do that – leaving my overhead light on and not coming back for at least five minutes. Like I said, not a terrible crime but not very sensitive. But the thing with my roommate was way worse and inexcusable. He was elderly and obviously had some form of dementia. He had made a mess in his bed but wouldn't let her clean it up. He was clearly not in his right mind, but she was yelling at him the way you might yell at a belligerent child. Everyone in the hallway could hear "You're lying in your own feces! Why would you want to do that? That's disgusting! I need to clean you up! You're lying in feces!" over and over. Trying to use logic with someone who couldn't understand it is bad enough, but there was no need to humiliate the guy. I only had to deal with her once or twice after that, but I was happy when they moved me to a room on a different part of the floor away from her.

An article talking about the great people from Grand River wouldn't be complete without a mention of Ruth. I never caught her last name, but she was a porter who took me to and from various procedures throughout the hospital. I had many procedures done that required a porter to take me there and back, and it was kind of strange how often it ended up being Ruth. She was very friendly and went out of her way to make sure I was comfortable. And not just me – she and Gail hit it off too. The CT scan waiting room was always cold, and so whenever she took me there she got me a warm blanket (kept in this little oven-like thing, so when I say warm, it was warm), and she'd always get one for Gail as well. A couple of times, she'd bring me down for a procedure and then go off to do something else. Then she'd come back a little while later, usually bringing someone else down, and notice me still waiting. Without a word from me, she'd go and find out how much longer I'd have to wait and sometimes even manage to bump me up in the queue somehow. She was always asking how I was doing and seemed genuinely concerned. After I was discharged, I returned to the hospital for a follow-up CT scan and saw Ruth again. She came over and hugged both me and Gail and said she had been wondering how I was doing. She is a wonderful person and I feel really bad that the letter I've been meaning to write to the Grand River Hospital executive praising her has not yet been written.

I went to see Dr. Pace again a few times after discharge, and during one such meeting he said something that has stuck with me. We were talking about my return to work and he was telling me not to rush back, to make sure I was really ready before I went back. He told me "You've just been through a life-threatening illness and major surgery, and..." but I don't remember the rest of the sentence. I was stuck on "life-threatening". He confirmed that yes, this was indeed life-threatening, and Gail admitted that doctors had told her right from the beginning that there was the possibility of things like multiple organ failure. I didn't know any of this. I'm not sure if I was optimistic or just naïve, but I somehow managed to survive eight weeks in the hospital without seriously considering that this illness might kill me. I'm pretty sure the thought did occur to me a few times, but I always managed to push it away without really thinking about it. Perhaps the really dangerous part was at the beginning when I was doped up on painkillers 24/7, and by the time I was coherent enough to really think about such things, I was already on the mend. I'm actually glad that I didn't know how serious it was at the time – that kind of anxiety would not have helped my recovery in any way. Every time I saw Dr. Pace after that, he mentioned in some way that this had been life-threatening – Gail and I figured he was exaggerating just a little bit and it almost became a running joke. Once I told her that I couldn't wash the dishes or do some other minor task because I'd just been through a life-threatening illness. But part of me was always a little nervous making a joke of such a thing, because what if Dr. Pace wasn't exaggerating about that? What if I had been close to death? Then again, it doesn't really matter now since I'm pretty much recovered, and because I no longer have a gall bladder, I don't have to worry about it happening again. It occurred to me the other day though – am I more likely because of this to suffer some from related kind of gastrointestinal problem when I get older? Is my pancreas working OK for now but damaged enough that it could just fail sometime in the future? Did this shave ten years off of my life expectancy? I'm sure there's no way to know and honestly, it doesn't much matter. I've always been a "live life to the fullest" kind of guy, and worrying about it won't change anything. I'm going to enjoy the time I have as long as I have it, whether that's five years or fifty. But I'm kinda hoping for fifty.

 

Parts of these three articles were a little weird to write, since my life is pretty much back to normal at this point. I've been working full-time since the beginning of July, taken the boys to soccer games and practices, gone on family vacations, played golf, tennis, and volleyball and walked many kilometres, even driven from Sundridge to Sudbury, back to Sundridge and then to Baysville in one day (total about 475 km). My abs are still quite weak compared to before, and there are parts of my belly that are completely numb (the nerves were cut during surgery). The numbness is really disconcerting (bumping into things or leaning against things without knowing it) and feels a little creepy, and the doctor says it may last a long time. My leg muscles also get really sore after sitting for long periods of time. But I haven't been in a hospital since the end of July (it's currently late September), I rarely feel significant pain or discomfort related to my surgery, and other than a few minor issues related to the aforementioned ab and leg muscles, there's nothing I could do before that I can't do now. 

I left the hospital less than six months ago, but thinking about all this stuff already seems surreal. Everything I've written about here is so different from normal that it almost seems like a dream. A long, painful, frustrating, terrible dream. Was it just a dream, or did all that crazy stuff really happen? <looks at fourteen-inch scar across tummy> Holy crap, it did.