Emergency and Me - The First Few Days in Hospital

The ongoing story of my discovery that instead of an ulcer, I have cancer. Here's part one.

I left off part one as I hit the front door of the emergency department at Maple Ridge Hostpital.

I'd been here myself before only two weeks earlier. I'd also been here with my wife, Shirley, only two days before, and she was still here in the hospital somewhere. 

It was about 4:30AM and I was being taken into emergency at Maple Ridge Hospital by a pair of paramedics after a brief ride sitting up in the back of the ambulance.

I'd met them at the door, and, after cautioning them not to step on "Tracy's lawn," refering to the new lawn installed recently for me by my neighbour and their compatriot paramedic whose side-business is spraying new lawns with seed and mulch mix from a neat little trailer she keeps in her front yard here in Pitt Meadows, they came and we walked back to the ambulance.

I was groggy from lack of sleep but otherwise really in pretty good physical shape. I just didn't trust myself to drive even the few blocks to the hospital for fear of falling asleep at the wheel. In previous weeks I'd noticed this tendancy if the road was too unbroken by stop lights and traffic for any more than a few minutes, and by now I'd had no sleep for over 30 hours, not just the average 3 hours sleep per night I'd been pretty much existing on for the previous 6 weeks or so.

So instead of having them struggle with the gurney, I simply got into the back of the ambulance and sat down in the jump seat behind the driver. They strapped me in, we were off, and here we were. I was about to enter the world of British Columbia's medical system with a real problem, not just one that needed a bandaid, and along the way I was going to deal with all aspects of such a visit, from food to cleaning to nursing to facilities and all. So come on, let's go...

I really don't recall much of Saturday except that for whatever reasons I didn't get any sleep until that evening when they gave me some morphine and I got a full 7+ hours of sleep before the blood-workers came in for their daily leachings. Glorious!

I'd seen an emergency room doctor and been assigned a "hospitalist" because our own family doctor has no hospital priviledges - a bureacratic and cost-cutting status I'm sure. In any case, the hospitalist also referred me to Dr. K. who specializes in gastro-intestinal work and in fact is the partner of the Dr. H. I'd been given the referral to two weeks earlier when I'd been in.

Dr. K., a surgeon who as it turns out specializes in gastro-intestinal cases, came to see me Sunday morning and, based upon his evaluation of what he saw, slotted me into his busy schedule for a gastro enteroscope session as soon as he could - in this case, Tuesday afternoon in the coming week - 3 days away. He obviously (and I have not questioned him directly on this) either agreed that I had an ulcer and it needed looking into, or thought something was odd and simply wanted to confirm this before getting on with other options which, as it turned out, was the correct thing. I guess I'll have to ask him when I visit him next week for my biopsy results.

I spent the time until late Monday gaining more sleep each night and otherwise pretty much wandering the halls of the hospital. I was put into a room in the new surgery recovery wing, presumably because I was in fact going to be in "surgery" but possibly only because it had an available bed; don't know.

Shirley was down the hall and around the corner in one of the older general wards on the same floor. Lots of interesting comments as people found out we were both here.

The routine of the hospital along with the need to keep my medications and various drips and things flowing started to take over my life. On the weekend it appears that most of the staff were on 12 and 12 shifts with the changeover at 7AM and 7PM. 

From my point of view, I was in the best of care. Aside from needing the morphine that I was being given in order to sleep, I was not in any particular need of care other than changing out the IV bags as and when they needed it. I was listening to music on my Android phone (thank goodness I'd finally succumbed to getting a smart phone the month before - but that's another story.) and could do things like get up and wander around pretty much at will as long as I pulled along my IV cart. No dressings to change, etc. Only be around for the various medical procedures that happened pretty much like clockwork.

Not My Drugs

Because I was in hospital, the first thing the nurses did was take over all my doling out of medications. I was not supposed to need anything from my own supply that I'd brought - they would arrange for equivallent from their pharmacy. The one stumbling block was Januvia - the new diabetes medicine I'd been put on only a couple of months earlier. It is new and not covered by BC Medical, and the pharmacy didn't have it in stock at all. My 100 or so pills were thus taken from me and "relabled" as if they came from the hospital pharmacy, even though I'd paid hard cash for them personally.

This whole thing of doling out drugs became a bit of a sticky point pretty much the whole time I was in the hospital for one thing or another. You see, the diabetes drug regimine I'm on works for me but is not quite what the doctors there are familiar with. I have far more leniency in what I do than many typical patients, simply because I've worked at knowing what works, why, and when, to better control my diabetes than many patients. Thus, I've gone over 15 years on diet and metformin control whereas my internist originally predicted that "you'll be on the (insulin) needle within the next 10 years" when he first had seen me that 15+ years earlier.

Each time we meet, he continues to say "it will be 10 years," but from today, rather than the first visit; and his advice is "keep doing what you're doing - it works."

So... where it comes to my long-term disease, I tend to simply disagree with anyone who wants to change things - thus the conflict.

The problem is that the nurses simply don't have any leaway in how they interpret the prescribed drug regimine from their local doctors - and since my own family doctor was not allowed to treat me directly while in hospital (I found out he had not even been informed I was there) there was some time between when the doctor issued the orders (and I didn't know what that was until the nurses tried to act upon them), the nurse acted upon them, and I objected - too late to get the doctor back that day to change things. Conflict.

First, it was the matter of timing of just giving me the metformin (the Januvia got forgotten completely the first round) where the doctor said something like (from my hazy memory) 8AM, 1PM, 8PM. 

The problem is, I take the metformin either just before, during or just after each meal, including possibly snack time in the evening. 8AM was fine - is breakfast time, except they always brought it afterward by some time and when I say "right after" I mean "right after" is seconds, not 1/2 hour later.

I also was only given one pill at a time when my "dosage" is 2+1+2 for morning, noon and evening meals; except I can decide based upon the actual constituents of the meal whether I'll take 1 or 2 at morning/evening - and hold the second for a later snack.

Nope - if I wanted another pill I'd have to ask for it.

Nope - I could not have the evening meal pill with me before the meal came - wait until 8PM

Nope - don't know what Janovia is - and certainly don't have info about you taking it before one of your meals once per day.

Me, "OK - fine - I have my supply in my pants pocket and I'm using that for now - you deal with the paperwork, your problem, not mine. Mine is staying healthy the best way I know - and I have 15+ years of doing it right. Get the doctor to call me - here's my number."

Yes, sometimes your advocate has to be tough and put a foot down. I'm my own advocate in this case and that's what I did.

We got the prescription re-worded to say something like "2 pills brought before breakfast, one before lunch, 2 before dinner, 1 Januvia before dinner. Patient will decide if/when the pills will be taken and will inform nursing staff when it is taken so the log may be kept correctly."

At least that's what I was told it was to say - over the next couple of weeks I still had some pretty strange outcomes or initial offerings and timings that I had to deal with. The problem was I was rarely dealing with the same nurse two days running at the same time. Yes, I got the same nurse many times but typically on different shift and in some cases both before and after I'd been correctly diagnosed with cancer, so the circumstances had changed radically. I had to be the one who brought consistency simply by insisting that that was the way it would be - and by having a hold-out stash of my drugs I could wave in front of them and say - "don't care, go away."

Eventually we came to an understanding and regardless of what a new nurse might initially bring, I'd eventually get things the way they were supposed to be; albeit with some incrdulous

looks when I said "I'll tell you when I take the second pill - don't worry."

IV Bags and Basics

Then there was my IV fluids and some new drugs.

I'd come in fairly dehydrated. Even though I was drinking lots of water, I was not getting any minerals - salt, etc. - that would stick with me, so I was peeing it right back out and my sodium and potasium levels were out of whack. I got two fairly quick bags of 0.9% NaCl (salt water) when I first hit emergency and started to fill back out.

I have a barometer for my fluid level that has worked for me for years - my watch strap. If my fix-o-flex watch strap on my old Microsoft Data Watch is loose on my wrist then my fluids are down. If my watch stays put on the top of my wrist then all is right. My watch was all but falling off. Could not pull it up in front of me without holding it with my other hand from rotating down on my wrist where I could not read the face.

After that first couple of liters, the pace of fluid input was lowered and for most of the rest of the time I was in hospital I was getting at least some intravenous fluids; either the NaCl or later the potassium (KCl) version. I was also eventually councilled to limit my pure water (as opposed to juices, milk, etc.) Input to 2 of their little jugs per day as that water tended to simply go "in one end and out the other" collecting a bit of my electolytes along the way; not contributing to my overall fluid level.

Only fluids that did the full circuit, releasing nutrients along the way and taking hours rather than minutes to traverse, would really help my fluid levels.

The machine used to regulate the IV drip is quite interesting. I'm a tech junkie and spent some time watching how it worked, noting when it found problems (like air in the line) and speculating how it worked internally. Would love to take one apart but don't expect the hospital would appreciate me doing so.

One of the interesting aspects of it is that it has a program mode that allows for a second bag of fluid to be piggy-backed onto the main one and the combined flow adjusted to administer all of this second (smaller) bag in a set time, falling back to the original flow for the balance of the main larger bag. The two bags are hung at different heights - the large one low and the small one high. This is how my morphine was administered initially. Every 4 hours or so a new bag would be added and the machine programmed to administer the combined flow at 250 ml/hour where the typical rate for the main bag was only 75ml/hour. 

Some of these machines had only a single "channel" and others had 3, so that 3 different IV bags could be programmed and monitored at once. At one point I had a second channel in use for a low-dose "proton pump inhibitor" drug that was to limit the acid in my stomach, still thinking I had an ulcer.

I watched the nurses do these bag changes each time, and tended to adjust the machine's carriage after they were finished so I could see the front panel with the readout of what it was doing, even though at night the light was somewhat distracting (although it makes a great night-light in the toilet at night so you don't have to blind yourself with the main light). Most people left the screen facing the foot of the bed where the nurses could see it and where they typically left it after inputting their settings. One of the night nurses commented on this, asking, "why do you always want to see the screen?"

My answer that I was simply curious and interested seemed to satisfy her but she still thought it was a bit strange otherwise she would not have asked.

My attention to this paid off a couple of nights later as a different night nurse did the same routine of adding the morphine bag to the main IV line and started programming in the push rate.

No sooner had she left than I turned the screen back to me, only to see that she'd programmed the push amount into the second channel, not the first where she'd hung the morphine. This second channel had the stomach medicine on it and, while getting 10 times as much as I should have of this particular thing probably would not have killed me, it likely was not good. I immediately pushed the call button and hit the off button on the channel.

She was back in a moment and appologized profusely - and my vigillance was thanked. No notes, no harm, no foul, and I don't recall which night this was. You'll just have to take my word, and this again is why you need vigillance and somebody as your advocate. It was not the only time I saw an error and caught it.

They Make Errors - You Catch Them

The next time was in fact only a couple of days later when another nurse came in to hang yet another drug on the machine. This one, some sort of anti-nausea drug, was not something I knew anything about, but she insisted it was prescribed. I not only questioned it, I told her to stop and check again.

She did - and again came back and apologized - that drug was not for me.

Again, it would not have killed me. In the long run I probably would not even have noticed it, but the reality of it is that it could have been something that conflicted with other things I was taking.

You simply have to take interest and note of what "they" are doing to and around you. If you can't do it, ensure you have someone you trust around to do it for you.

So, we've gotten me to the first few days of being in hospital and dealt in some measure with many of the various things that await you as you enter this world. Next we'll deal with the other most consistent aspects of hospital life: food and monitoring your vitals.

The food story for me is "different" since I'm a diet controlled diabetic - and as far as I can tell the hospital system is simply not set up to differntiate between insulin dependent and insulin resistant versions of this disease.

To say I became a bit obsessed with this diet thing is almost an understatement - but you'll have to judge for yourself when you read it.

As for measuring and monitoring you - that too has its interesting aspects. We'll get there soon.

richard

Tag: cancer intravenous iv diabetes metformin januvia nurses