Broken. Like our system


I think this is going to be a difficult post to write.

To recap for our new followers (Welcome! Thanks for joining us!); about a year and a half ago, my husband ended up in the emergency room for what turned out to be pulmonary edema. He spent the night in the hospital, was sent home with a prescription (without being told what it was for) and told to follow up with his regular doctor. He had a week’s worth of what turned out to be water pills, but the earliest he could get an appointment with his doctor was almost 2 weeks later.

While he had been feeling a bit better for a while, once he ran out of the pills, he started to crash again. When we got to his appointment, he was in such bad shape, I had to ask for the use of a wheelchair to help him come in.

The clinic was part of a hospital building, but there was only 1 bariatric wheelchair. I can’t even remember right now if they ever found it. I think he ended up using a regular wheelchair. The nurse that wheeled him into the exam room was looking very alarmed, and was saying my husband would probably be going straight to the emergency room. Sure enough, the doctor basically took one look at him and sent him over. They were wondering why he hadn’t been followed up on after his time in the emergency before, and we told them that this was the follow up!

He ended up in the hospital for 3 weeks. In that time, along with almost killing him by giving him too much insulin and not checking his blood sugars before deciding on the doses, they managed to drain over 100 pounds of fluid out of him. His pulmonary edema was actually peripheral edema, and he was diagnosed with heart failure.

Since then, my husband had been expected to go into the city once a month or so, as they tried to determine the cause of his heart failure and decide on courses of action. There is only one cardiac clinic serving the entire province so, as you can imagine, it’s pretty busy.

These trips have been incredibly hard on my husband, his back injury and his pain levels. It’s one thing to be sitting in the van for the drive (about 3 hours driving in total). It’s another to be sitting in the waiting room for such a long time, then waiting again in the examination room, only to be seen for maybe half an hour.

Now, we deliberately leave early for these appointments. It takes an hour to reach the city, under normal circumstances. Getting to the hospital, if traffic is light and we get nothing but green lights, takes maybe 10 minutes. Most of the time, though, it takes about 20 minutes. That gives us another 10 minutes for me to pull in, unload his walker, leave him to find his way in, then search for someplace to park.

However, we don’t leave things to chance and leave 2 hours early, and today is a good example of why this is necessary. On the way to the city, we hit a section where cracks in the road were being patched. A two lane highway was reduced to one lane, and they were alternating each direction of traffic to let through. So we spent some time driving very slowly through the construction, then just stopped on the road as we waited for traffic from the other direction to pass through. Then, once in the city, we were delayed by more lane closures bottle necking traffic. That one area has been under construction for as long as we’ve been out here, so more than three years! I really would have expected them to be done by now. :-/

My point being, we respect their time and go out of our way to ensure we will be there before the scheduled appointment, so he can be checked in and ready when they are.

There was one day, however, that – after waiting for 1 1/2 hours – he was in so much pain he walked out. It was that day that we discovered they built in a half hour waiting period. So while he was told in to come in for a certain time, they had his appointment for half an hour later. We’d already come in 15 minutes early. Even with the built in waiting period, they were still 45 minutes late when he left. Who knows how much longer he would have had to wait if he hadn’t. They certainly didn’t seem like they were going to bring him in anytime soon.

He talked to the clinic on the phone after that, and for his next appointment, they had a stretcher for him. It helped, but the trips still wiped him out.

To make things worse, they have not been able to figure out why he has an ejection fraction of only about 20% (I think it’s up to 22% now). They can’t find anything to explain it. There is no reason that they can find, for him to have heart failure.

Then the pandemic shutdowns happened.

He was supposed to have an appointment in April, when they called in March. After interviewing him on the phone, it was decided to continue with phone appointments until they could start rescheduling. It was a surprise to be called back for a June appointment. We were expecting July or August.

He ended up having having to cancel due to pain.

He was rescheduled to July and had an appointment then, but with the pandemic measures, I couldn’t go in with him. It was a short appointment.

He had an appointment in August. Pain was a major issue again, so he called to ask if they would be able to accommodate with a stretcher again. I’m not sure what exactly they said, but he was made to feel like he was imposing on them significantly, so he cancelled the appointment.

Today was the rescheduled appointment. One of the things they want to see him for, is to decide if he is a candidate to have a defibrillator implanted.

With all the delays, I was still able to drop him off almost 15 minutes early, then found a place to park some 5 blocks away. I knew I wouldn’t be able to go in with him, so I just walked around to play Pokemon Go.

The high winds that broke our tent had clearly hit the city, too! This tree was in a park near the hospital, and I was seeing broken branches all over the place.

My husband was able to text me to keep me updated, so I knew when he was able to get checked in. Some time later, I got another text from him.

He was still in the waiting room.


There was absolutely no other patients waiting. Not only that, but I found out later that at 12:30, which is he was told his appointment was for, he saw and heard a group of doctors, leaving. They were going for coffee.

Did they book in a half hour waiting time again? Without any other patients???

Finally, after he’d been waiting half an hour, and he was already telling me he was ready to leave, he was brought into an examination room. By that point, I was starting to meander back to the van.

Then I got a text simply saying “I’m out.”

So I rushed to the van. When I got there, I quickly texted him to let him know I had reached the van, so he would have an idea of how much longer I would be.

That’s when I noticed the time stamp on his last text.

There was no way anyone had seen him.

So off I went to pick him up at the main entrance. This is supposed to have a patient loading zone in front, with enough room for several cars, or a couple of handi-vans.

Of course, people were just parked there. The vehicle in front of me didn’t even do that. He just sort of half pulled in and stopped. I ended up having to drive around him, then stop in the lane – thankfully, there was no traffic behind me – to pick up my husband and load the walker into the van.

As we drove, he told me the rest of what happened. After waiting, in pain, for so long, he finally struggled to get his shirt back on, then simply left. As he was leaving, a tech was coming in with the EKG machine, and she called out to him, but he kept going. As he went through the waiting room (which finally had one other patient in it), the woman behind the counter started chasing him down. By this point, he had no tolerance left and simply said that next time, make the appointment for the actual time, and kept going.

We both realize that he is probably viewed as a problem patient right now. What we can’t figure out is how a cardiac clinic in a hospital can be so oblivious to accommodating the needs of disabled patients. I mean, besides heart conditions. After a year and a half, and his pain being an issue in the past so often, you’d think they’d at least have notes on his file or something, about his extenuating circumstances.

I don’t know.

My husband plans to write to the clinic with a letter of complaint – though he’s going to give himself time to calm down, first! I suggested that he send a copy of it to our new doctor, too.

At this point, he doesn’t want to go back. At all. He sees no point. They’re not finding why his heart is doing what it’s doing; everything else related to his heart is checking out healthy. He’d already been doing most of the things they recommend, and the things he isn’t doing, he can’t because of his back injury and pain levels. They did acknowledge this issue.

He is hardly the only patient they have with multiple health issues beyond a heart condition. How many other patients are going through the same problems he is, but aren’t confident enough to simply get up and walk out? How many are just meekly accepting being treated like afterthoughts, because they are too scared of their condition to speak out? I guess that’s one “benefit” for my husband; he’s been through so much over the last while, developing a heart condition is just another thing on the list, and not even near the top.

At this point, I don’t know what steps will happen next. For my husband, getting the pain under control is the greater priority. And that is waiting for the doctor at the pain clinic to talk to our new doctor. Which doesn’t seem to have happened yet.

This is all so incredibly frustrating.

The Re-Farmer

A little friend, and change of (medical) plans

While picking cucalmelons this morning, I found a little friend!

We’ve been seeing LOTS of frogs about this size, every time we to go through the garden beds. Usually, they hop off too quickly for me to get photos, but this one didn’t move!

He was even okay with the cucamelon leaves being pulled aside.

I am very happy to see so many frogs in our garden beds. I’m sure they’re doing a great job of eating up things that would be eating our vegetables!

On a less cheerful note, the original plan for today had to change. This was the day I was supposed to bring my husband into the city for an appointment at the cardiac clinic. They want to discuss the possibility of implanting a defibrillator in him.

Unfortunately, about a week ago, my husband discovered cats had peed under his hospital bed, and under the small table with the mini fridge he keeps some of his medications in. He cleaned it up himself, rather than asking any of us to do it.

He still hasn’t completely recovered.

When his pain levels didn’t improve by Monday, he called the cardiac clinic about his appointment. The letter he received said to expect to be there for at least 2 hours. He explained his situation. The choices were to either cancel the appointment, or they could find some way to accommodate his pain levels and disability.

The appointment got cancelled.

They way he put it, the response was along the lines of, how dare he mess with their system.

They will send another letter with a new appointment (I find it interesting that they make these appointments with zero input from patients), and after he gets the new letter, he can talk to them about accommodations. Of course, he has no way of knowing if he’ll have a good day or a bad day – or even a good week or a bad week – that far in advance. That’s why he was stuck phoning them only about 48 hours before today’s appointment. No matter; even if he’s having a good day, being able to lie down on a stretcher of something would probably be needed, just after such a long drive.

I understand why the province has a single cardiac clinic in a central location. It is probably much more efficient, and allows for things like better access to equipment. The problem is, like almost all Canadian provinces, we are geographically huge, and not everyone lives in or near this particular city. We’re just an hour away from the city (though it can take another half hour to reach the clinic, depending on traffic), and it’s difficult enough. I can’t imagine living in one of the fly-in communities and needing cardiac care. Sure, the small communities don’t have the population base to warrant their own cardiac clinics, but there are large towns and other cities that could serve these more remote communities.

The fact that it’s such and inconvenience for them to accommodate my husband’s disability is also frustrating. They’re in a hospital, for crying out loud. And with so many hospitals cancelling care to make room for all the pandemic hospitalizations that never materialized, there are plenty of stretchers and beds available that could be used for someone like my husband, without having to prearrange it weeks in advance.

Another unfortunate thing with my husband is that his pain levels have forced him to cancel a number of appointments. He has also done things like walked out after being forced to wait well past his appointment time, due to pain caused by the wait itself, and basically has stood up for himself. He is likely now considered a “problem” patient. I don’t think they realize that, when it comes to his list of health problems, his recently developed heart condition is actually not at the top of the list. Not even close. With everything else going on, this new development doesn’t even phase him, and certainly doesn’t frighten him, as it probably more typical. His pain needs to be gotten under control first. Some of his other health problems are caused by the pain itself, and will improve on their own, accordingly. They have not been able to figure out why his heart failure developed in the first place, and we’re pretty sure it has more to do with the large number of medications he is on, and has been for such a long time, than anything else. We already know that there is no surgery or treatment that can “fix” the physical source of his disability, and it will continue to cause further degradation of his spine. The only real thing that can be done is treat the pain. That’s the foundational thing. Without that being addressed, treating his other problems are little more than stop-gap motions.

This has been explained at heart clinic appointments a few times. I’ve watched notes get taken for his file, that the whole team looks at. There is no reason for them to not be aware of his disability, and what that means for his appointments. Even the fact that we have to drive so far and the affect that has on his pain levels has been duly noted.

Yet when he tries to address this with them, he’s made to feel like he’s inconveniencing them somehow?

Not impressed.

Well, next week he has his first appointment with the pain clinic. Hopefully, that will get the ball rolling on more effective treatment.

The Re-Farmer