It can be very scary when the roles are reversed and the doctor becomes a patient. This is my story.
It was 3 days after my 2nd daughter was born and Charlotte was a tiny thing. Barely 3 days old when I started to feel unwell. Unlike with Lily the pregnancy wasn’t the easiest, neither was the birth.
We had a slightly more difficult pregnancy with Charlotte than we did with Lily because they kept telling us she wasn’t growing well. Actually more accurately they were telling us different things. One of the joys (not) of the NHS in the UK, you would rarely see the same doctor twice. It’s one of the benefits of a more private system that we have here in Australia, you mostly get to choose how to see and have that same person throughout.
So we were seeing different doctors each time. Every few weeks we would go back from about 26 weeks onwards for another scan, blood tests, etc. It was very tiresome. Especially when we were often told one week she wasn’t growing, then the next she was growing fine. Each time it seemed they had a different opinion, and the plan changed.
Eventually though she came and she was perfect. Small, but not unduly so. Not surprising as both our families are small.
She was doing well, my wife was doing well, and we were both managing to get a little sleep here and there.
I started to get unwell
I woke up on the Friday morning having some discomfort in my chest. I didn’t feel too bad, and thought it was indigestion. A familiar story if you know anyone who’s had a heart attack (thankfully I hadn’t). I stayed in bed as it was a grumble only.
It didn’t really get better. I thought it was indigestion. I do get them from time to time and it can be really painful at times. One of the curses of being a patient who’s a doctor is that you can often downplay your symptoms.
It wasn’t really improving. Eventually it eased it a little and I went downstairs. I should’ve been worried when I wasn’t hungry – and my wife jokingly said ‘are you unwell?’. Turns out I was.
We were sat on the sofa and I was feeling more and more unwell, but as many men (and doctors of all genders) do I shrugged it off. Imogen my wife was a bit concerned, asking me if I felt ok? Of course I responded with ‘yeah it’s just indigestion’.
30 minutes or so went on when she turned to me. ‘I’m really worried you are dripping with sweat’. I’d realised by now as well that something wasn’t right and this wasn’t indigestion, but I didn’t think I needed the ambulance yet, so I dutifully rang up my local GP and asked for an appointment. They squeezed me in out of professional courtesy (sometimes there’s perks of being a doctor) and I drove down. Even though it was only about 5 minutes walk, I didn’t feel up to that.
At the doctor
By the time I got to the GP they were concerned..
You look like shitMy GP
Yep that’s what they said. They got me in straight away, examined me. Not much to find, but I looked like shit. A very technical term. Sometimes as doctors we do actually use this kind of language. Not often though. I usually try to mirror the kind of language the patient uses, it’s a good communication skill – within reason of course. Sometimes we do the numbers, examine the patient, and everything seems ok, but the patient just doesn’t seem right. Well that was me.
So anyway I looked like shit. The nurse and the doctor were worried about me. I was worried by this point and my wife was worried. She was also at home with a 3 day old baby and an 18 month old. I felt bad that I had left her to fend for herself but knew she’d manage.
I’m calling the ambulance for you. Is that ok?
I nodded. I didn’t argue. To be honest I couldn’t talk much by this point and I was a bit out of it. The paramedics arrived a few minutes later and duly bundled me in to the back of the Ambulance.
So why was the doctor so worried? He’d done an ECG (or EKG for you Americans) and it showed something called Pericarditis. Above is a sample ECG of what it might look like. I’m not sure exactly what mine was like I never got a copy.
You can find more information about Pericarditis here but basically it’s when you get irritation and inflammation of the pericardium – the sac around the heart.
Sounds scary, but it was to get worse.
In the ambulance
The GP was great. They got me in straight away and called the ambulance for me. They also called my wife to tell her what was going on.
The ambos were great as well. They offered me morphine for the pain. I declined because I didn’t think it was that bad. Then it got worse. A line was put in and the drugs drawn up while another ECG was done.No changes on that so that’s good (dynamic changes is bad).
Things started to feel better with the morphine. I called my wife to tell her I was ok but I was going to hospital and the GP thought it was pericarditis. ‘I should be out later today hopefully’ I said. Little did I know how wrong I was.
First we went to the local hospital – a good hospital, but a small-ish one, without a dedicated cardiac unit. The paramedics called ahead to discuss my case with the duty doctor but they thought I was better off going to the big shiny building in the city with a cardiac unit.
As a doctor I now realise this is a bit more serious that I initially thought. Most patients with pericarditis usually don’t need any treatment at all, other than some minor pain relief so to be transferred to the big shiny was scary. Of course the ambos downplayed it but I knew the score. One of the curses of being a doctor-patient.
Making phone calls
I didn’t feel too bad, and I needed to make some calls. I was meant to be in work after a few days as I had only taken a week off for paternity. Being self employed it’s always a battle when it comes to time off, because you directly see your income drop with no paid leave.
I rang the surgery and of course they understood. Things did get worse, but not quite yet.
I had to make another call and I was really worried about this one. I had to call the immigration medical team. No I wasn’t some illegal alien that was being deported. Far from it. We were emigrating Down Under and I had to have a medical for my visa.
Now I was really worried. I’d paid a lot of money already and the cancellation policy only allowed you to rearrange without cost if it’s an emergency. How do you ring up to rearrange, tell them it’s an emergency, without giving them the information? You might ask why I was so worried? Surely they’d understand? They did understand, but I was off to Australia. A land with possibly one of the harshest immigration policies known to mankind (at least it seems like it sometimes). A place where they quite openly advertise that if you have virtually any health problems they won’t let you in to the country, and there I was ringing up to tell them I was in an Ambulance with my heart…
Thankfully it all worked out fine and it wasn’t even an issue, but I didn’t know it at the time.
I called my parents to let them know, just in case my wife needed a hand, and my wife did the same with hers who came to visit to help out.
At the hospital
Having to wait to be seen in the Emergency Department is a good thing. You should worry about those that get seen straight away.Unknown ED doctor
Arriving in an ambulance is never a good thing. Patients often get really annoyed when they have to wait at the ED, but really they should be grateful. It means they aren’t that unwell. The ones that get seen straight away should be concerned.
I was seen by the team, had some tests done. Had some more morphine. I was moved to a holding room before going to the coronary care unit. I was stable and feeling ok.
As you would expect my wife was very worried. She was at home with a newborn baby, an 18 month old and a husband who had been rushed in to the hospital by Ambulance waiting to move to the cardiac unit. I was aware of all this which only made me feel guilty.
Feeling guilty for being unwell. A bizarre feeling, yet one that often we will have. Just think about the last time you had to call in sick for work, you probably felt bad about doing it even though you may have felt like death warmed up, you still felt you should soldier on.
The patient experience goes downhill
So far everything was going well as a patient. I’d been seen straight away by my GP, the ambulance crew had arrived promptly, I had been given pain relief, everyone seemed really nice and friendly and my ‘patient experience’ as we call it was good. Maybe it was because I was a doctor and a patient, maybe they were just really nice.
Things unfortunately went down hill from here though, both from a medical perspective but the patient experience also.
I was in a holding bay of sorts. A short stay unit designed to put patients who didn’t need to stay overnight but also couldn’t go home straight away. The reality as I’m sure most ED staff know is really it’s a place to put patients to fudge the numbers.
In the UK and also some other countries, there’s a ‘4 hour target’ that EDs have to treat patients in. It’s a political target with absolutely no basis in evidence. Like a lot of NHS targets though it’s easily met by a bit of lying. Not the doctors and nurses lying, but the admin side.
Perhaps lying is too strong a word, but we all know that once a patient has left the ED then the clock is stopped and the target is met. Unfortunately that doesn’t mean going home, it can simply mean moving to a new ward. Enter the Short Stay Units. A place that’s little more than a dumping ground for patients who would otherwise breach that sacred 4 hour window because they can’t go home.
So there I am in the room, a 4 bedded room all by myself. A lonely place. Nobody else to talk to. No other patients. No staff. Not even a cleaner or nurse passing by from time to time. It seemed totally devoid of life and how was that going to make me feel? I’m scared and lonely. If I was a patient who didn’t have medical knowledge I’d be terrified thinking I’m having a heart attack and nobody is there to help, that nobody would even see me die.
As the time went on this is where my thoughts turned to in that cold dark lonely place. The fear started setting in.
I called my wife, asked her to visit so I could see the kids. She told me she’d already rang the unit and asked if she could visit and they’d said no because she had to bring the kids.
Can you imagine what that’s like? To be told you can’t see your loved one in hospital? To be told you can’t see them when they might never return home? For all we knew that was a very real possibility. Imagine as a patient being told that nobody could visit you when you thought you were dying?
I really did feel like I was going to die at this point. That fear was starting to take hold of me. I told her to just visit anyway and screw the rules I needed to see her and the kids. They wouldn’t physically stop her, they had no grounds to, so they’d have to just put up with it.
She did and they did, but not without a fight. It was agreed for a short visit. 30 minutes or so. To see my newborn Charlotte and my other daughter Lily who at 18 months knew I was unwell but had no clue what was going on. All she saw were tears from her parents. Tears at the thought that one of them might not make it home. Tears at the thought of living the rest of their lives without the other.
We kissed and cuddled and said our silent goodbyes, hoping desperately I’d be ok.
I got worse
As I lay there by myself without another human being in sight, I was afraid. That fear had definitely set in and I was mentally getting much worse, but physically seemed ok.
Until I wasn’t.
My condition changed. I felt pain. Real PAIN. Serious pain.
I pressed the buzzer for help. It was getting worse. No help was coming. I pressed it again. Still no help. Eventually I pulled the emergency cord.
The pain was worse. It was escalating rapidly. It was now a deep seated, searing pain. Pain that felt like my entire body was on fire, yet concentrated in a tiny spot in the middle of my chest. Pain that felt like it was from the very bowels of hell and I was burning in eternal torment. The kind of pain that you can only possibly know if you’ve experienced it before and is just impossible to put in to words.
What came with the pain was even worse.
I felt my life ebbing away
I felt like I was dying. The end was coming and I knew it. This was it, time to go. Time to let it all go and be free of the pain. The textbooks call it a ‘feeling of impending doom’. Let me tell it’s so much more than that.
I sound as if I’d lived a life of torment and pain and was glad for the release. I hadn’t, but in that moment it felt like I had.
It’s such a strange thing to describe the feeling of dying. Impossible to put in to words yet we still try. It felt like my life force was literally being sucked out of me. It started at my fingers and toes. The feeling like my life was being drained slowly from my body, working it’s way up towards my heart. The heart, the thing which gives us life, that sustains us, its every beat keeps us going, was the very same thing which was killing me.
I was in pain. I was pain. It felt like there was nothing but pain. I’ve tried to describe the pain but really it was indescribable. I was writing around in agony.
You know those films where someone is in pain and can’t lay still. Trying to get up. Move around. Limbs flailing around. That was me.
In between my gasps for breath, desperately trying to suck some life back in from the air around me I was screaming. I was screaming in agony and terror. I was screaming for morphine, screaming for release. Screaming for someone to call my wife and tell her I loved her and I was sorry I was dying.
You can imagine hopefully what I’m feeling like at this point. So what did I hear back? ‘No we won’t call your wife’.
Say that again? Yeah they said no they wouldn’t call my wife.
Now actually what I think they actually said was something like ‘we don’t need to call your wife because you aren’t dying’, but all I heard was ‘no you are going to die alone in this cold dark dank place like you deserve’.
It’s funny what our minds do to us when we are unwell.
What I do definitely remember quite vividly though is the total lack of compassion from the attending staff. Neither the doctors nor the nurses took any time to comfort me, to really reassure me (other than some platitudes of no you aren’t dying). Honestly they barely spoke to me.
Here I was dying (I thought I was at least) and they barely even acknowledged my existence.
Imagine what that feels like to think you are dying and the very ones who you hope will save you don’t seem to care if you live or die. As I’ve said in other posts, the words we use really do matter.
Eventually they just stopped giving me more morphine. I’m not sure how much I’d had, but whatever it was it wasn’t enough. I had just to deal with the pain, and worse, the feeling like I was dying.
This continued on for around 12 hours until the medication they gave me for it started working.
Coronary Care Unit
After having very literally the worst night of my life I was offered some breakfast. If you can call it that. A few slices of toast that were, in true NHS fashion, simultaneously burnt to a crisp and also stone cold.
If I remember correctly there was a trial done a few years ago at a hospital in England. They employed a real chef to cook real food for real patients. The results were astounding. It’s well known that poor diet leads to illness and actually kills more people than smoking. They found that surprise surprise, better food made people better. Not only that it actually reduced hospital stays, reduced re-admissions and reduced complaints. Even more importantly it reduced the cost and the budget improved!
Once again though in true NHS fashion they cancelled it. The budget wasn’t there, it was reallocated. Even though it improved EVERYTHING and reduced REDUCED costs, they still shelved it. Patients had to go back to eating slop again and suffering with it.
So there I was about to tuck into my delightful cold burnt toast (without any condiments I might add) when eventually it came time for me to move to a bed on the CCU. A place where second only to the Intensive Care Unit, you really don’t want to be. It means you are unwell.
The isolation room
By this point actually I was actually quite improved, though still in severe discomfort, it wasn’t pain. I was hooked up to all sorts of monitors, and had a room all to myself. Great I thought, my own private room, not stuck in an 8 bed bay with everyone else. A perk of being a doctor-patient perhaps?
Nope sorry sunshine, it was because they thought I’d kill everyone else there.
So let’s recap a moment. We’ve just had a baby, I’ve been rushed in to the hospital in an Ambulance, I’ve had the worst night of my existence and felt like I was suffering eternal damnation and having the life literally sucked from very soul, and now I’m starting to feel some improvement and I’m told that I’m going to kill everyone else?
It just keeps getting better.
Now imagine how I’m feeling. Suddenly that warm, spacious, comfortable (ish) private room seems cold, dark and lonely. I feel like I’m back in the short stay unit again.
The only saving grace is I get some half way decent food. Now it’s not a full english, it won’t be on a coronary care unit, but it’s decent. I’m fairly sure the specialist may have tried to crack a joke about that, but it got lost in all the other stuff going on.
I finally see a cardiology doctor. He’s great. Apart from a bad joke about a fry up he’s really nice. He sits with me but he follows protocol for a possibly infective patient and doesn’t get too close, but somehow doesn’t he feel detached.
We talk. Really talk. I’d like to think he does this with all his patients. We talk about what the night brought, and it’s a story he’s heard many times before. He hasn’t been through it himself but through the lived experiences of others appears to understand at least a glimpse of what it might have been like.
I finally feel like someone cares.
He explains what’s going on. My initial pericarditis had spread. It was not myopericarditis. Seems my body wasn’t content with just having my heart sack trying to kill me, it wanted my heart muscle to do it too. It’s what made the pain suddenly transform he explains. The medication is working, I’m improving, I should be out of hospital in a few days.
I can get up, move around, do what I like…in the confines of my room. Again I feel isolated. He explains the reasons though, they found some viruses in my blood that caused it – nothing too dangerous usually, often causing mild cold like symptoms. To the other patients though it could be a death sentence.
The cardiologist explains what all the fuss it about and I agree and tell him I understand why I can’t leave the room. I need a poo and so I ask ‘there’s no toilet in here, what do I do?’. The nurse hands me a bottle and a potty.
That’s right, I’m now weeing and pooing in to cardboard bottles and trays (no luxury plastic for me, infection control risk apparently) and the nurses having to come in a clear it out for me. So I have to sit there with a stinking poo in my room whilst the nurse finishes her other work.
The only solace I take is the fact that the nurse that cleans it is the one who refused to call my wife last night. Revenge is best served as a stinky poo in a cardboard tray apparently.
It finally comes time for my scan that the consultant said I would need. It’s not an echocardiogram (a bedside test often, non invasive), it’s an MRI scan. I’m wheeled off on my hospital bed but not before being made to wear gloves and a mask just in case I touch or cough on someone.
It’s not just any old MRI scan either, I’m to be injected with something to make my heart pump faster and harder so can see the damage (Gadolinium if you are interested in reading more about it).
I’d never had an MRI before, and I’m not claustrophobic, but it was a horrible experience. I’m not sure if it was the MRI or the injection that was the issue, probably both, but I felt bad. Really bad.
I tolerated it because I had to. Even small movements can ruin an MRI scan. Being a doctor I knew this already but they certainly let me know in no uncertain terms not to move.
It’s cold. It’s sterile. I’m lonely. There’s nobody to talk to. There’s a call button but only to be used in emergencies so I’m told. Suddenly I feel like I’m back in that cold dark short stay unit all over again.
I don’t think I have PTSD, but as you can probably tell I do have some insight in to what it might be like to suffer from it. During this whole episode so many things seemed to trigger me back to that hospital bed, writing in agony, feeling my life slip away and feeling like nobody cared if I lived or died. Even something as innocuous as a scan can trigger us to feel these things.
Hours pass. Almost the entire day goes by and it’s now in to the night shift. As anyone that works in the NHS knows, things don’t happen quickly. It’s a public service run on a shoestring budget, desperately trying to do far too much with far too little. It’s tearing at the seams and the glue that holds it all together is the goodwill of its [mostly] amazing staff. Goodwill that is rapidly getting eroded.
So eventually my results are given to me, but by this time the specialist has gone home. Gone back to his wife and kids, whilst I’m still stuck without mine. It’s been 24 hours since I’ve seen them and I miss them terribly. All I want to do is kiss my wife, hug my eldest and hold my newborn baby.
The junior doctor gives me the results. The most junior doctor possible. He tells me he graduated medical school recently and has been working for a few weeks and he doesn’t even have a password yet for the computer system.
He’s really nice and friendly, he knows I’m a GP and he treats me with respect. He apologises for the delay, explains why (the password thing) and proceeds to tell me the results. He reads the summary and admits he doesn’t know how to translate it into non medical language so he reads it verbatim.
It vaguely makes some sense to me but I don’t understand the nuances. He doesn’t either. What we both know is that there’s no dead tissue, no infarction, but there might be some reduced function. He gives me a percentage, it sounds scarily low. I don’t know what it means and neither does he.
I press him for more information, he apologises that he doesn’t know anything more. I’m getting scared now that I’ve got heart failure. I’ve seen plenty of patients with it and it’s a horrible disease, worse than cancer in my opinion. My future life flashes before my life.
I want details and I want them now. I press him again. I’m not angry, but I’m firm. He apologises yet again but he just doesn’t know the details. He doesn’t know what the normal function (ejection fraction) is of the heart really. He’s flustered and getting upset at his own lack of knowledge. He’s been exposed not knowing enough.
I apologise and give him reassurance that I’m not angry with him, that I know what’s going his head right now as I’ve been there before, and I tell him it’s fine to not know all the answers. He seems happier and we proceed to talk about non medical stuff. Honestly both of us are just really happy for some human interaction. Me a lonely patient in an isolation side room, him a scared junior doctor all alone on a night shift. We shoot the breeze and he tells me of his dreams of becoming a surgeon and he opens up about how hard he’s finding the transition from student to doctor.
The next day
I’m feeling better. The meds are working well. I feel positive vibrant. Until they tell me I’ll need to be in hospital still another day for observation. Oh and also I’ll need to take 4 medications for at least 3 months, if not my entire life.
Fantastic. I feel shit again.
They finally decided though that my wife could visit which is amazing. The kids weren’t allowed though which is horrible. She brings me some food and snacks and magazines which is great because is boring as hell in hospital and the food sucks.
I get the official results from the consultant. I have heart failure. Not bad failure, but failure none the less. I will have to be on these medications for at least 3 months to help my heart and see the specialist again in 3 months time. I explain that I’m hopefully not even going to be in the country in 3 months time and he agrees to see me just before I leave. He wants me to have another MRI before then which he admits in the NHS would normally be impossible, but he happens to know the head of the radiology department well and will get it sorted.
The day passes slowly, I read some magazines and watch a film on my laptop that my wife brought in. Night rolls around and I try to sleep. Unfortunately by this point I’m now realising that I’m in a horribly uncomfortable bed. I hadn’t really clocked it the previous 2 nights because apart from the fact I felt like I was dying I was also taking morphine still which helped me sleep.
Time to go home
Eventually it becomes time for me to go home. They are happy with me, but want to keep me another night. Thanks but no I say, I’ll take my chances. My mother in law comes to collect me which I’m very grateful for, especially as she also brought me some more snacks because it was dinner time.
Before this though they still wouldn’t let me out of my room until she was there to escort me. Like somehow her presence would stop me infecting others? Bizarre logic but thems the rules as they say.
Eventually I get home to my loving family and I’m happy. Exhausted but happy. I don’t feel lonely any more, nor do I feel like I’m going to die alone and in agony in an unfamiliar cold place.
I feel like I belong again.
I took a week off work. It was lost money (remember I was self employed) but it was essential. We just have to look ourselves some times and this episode really taught the importance of that.
I dutifully took the medications, but not without much protest. I hate taking medications, and you know as they say doctors make the worst patients. Eventually I just stopped taking them.
I felt fine so I stopped them. Something I occasionally have to remind my patients is not a good idea to do. Stop them I did though, although I wasn’t entirely stupid. I checked my blood pressure twice a day, listened to my own heart regularly, monitored for symptoms and signs of heart failure and followed up with my GP (who also told me I was stupid for stopping the meds).
Things remained fine and I got my visa medical eventually. I was really nervous but I had a lovely doctor doing it and he said he’d write a positive report. It worked and I was allowed in to the land down under where we’ve lived ever since.
I never did get that MRI though.