You know something drastically wrong, and you can't move anything. You got blood coming over the place.
I'd hate to say it, but I thought I was dying. Nobody can seem to know what's wrong with me
Hey guys
I'm Siobhan a second year internal medicine resident. Today is going to be a slightly different type of vlog
So in the past I've shown you what it's like to be in the hospital admitting patients what my crazy days are like
But you kind of don't get to see the real exciting part of Medicine which is building relationships with patients and hearing their stories
That's the main reason I went into medicine to begin with. So today is gonna be special
We're actually on our way
Driving to meet a man who has a really rare disease and it almost took his life. So we're gonna hear his story
(Siobhan) Meet Doug a strong active man who worked in the Sheriff's Department
(Siobhan) He had no medical conditions and really rarely even needed to see the doctor. Then with no warning
(Siobhan) He just started feeling unwell. (Doug) I was having rotating pain in my shoulders, my abdomen, my legs
(Doug) Just strange stuff that I've never experienced before
So I went to the doctor and
(Doug) He did a bunch of tests. (Siobhan) But they all came back normal. His blood counts, electrolytes, thyroid,
(Siobhan) b12, even blood cultures to check for a brewing infection
(Siobhan) But he kept feeling worse. So he kept going back to the doctor
You know, I started thinking well
Maybe it's in his head and I think him knowing that was really frustrating for him
(Dot) To see me kind of doubting it after a while, you know. (Doug) By the time we got to the third month I was, I was experience a lot more pain
in my muscles and
I was taking ibuprofen
And I seen the cure of it. It went away. So I said, it can't be that bad, probably
(Doug) 12 to 18 ibuprofen a day. (Siobhan) Okay, that is not recommended
(Doug) So that carried on and it just kept getting worse. (Siobhan) He had a cough that wouldn't resolve, large nosebleeds and
(Siobhan) Eventually, he started actually coughing up blood (Dot) And then watching him try to crawl up the stairs with our daughter behind him and
(Dot) You know, I knew something was wrong. (Doug) I was pretty well in tears to be honest with you. I was so frustrated with it
(Siobhan) Yet again Doug ends up going back to his doctor (Doug) And I just said doctor, I don't care about your blood tests
Something drastically wrong, and I think I'm dying from this
(Siobhan) At that point, Doug's family doctor called a rheumatologist who agreed to see Doug the same day
(Siobhan) After hearing Doug's story, the rheumatologist sent him directly to the hospital for a CT scan, to rule out a pulmonary embolism
(Siobhan) A blood clot in the lung that can cause hemoptysis
(Siobhan) Which means that you're coughing up blood
(Siobhan) He also ordered a whole host of specialized blood tests looking for autoimmune causes
Tuesday morning, and he called me up, the rheumatologist, and said Doug
I think I know what you have, you've got Wegener's. And he said don't go on the internet and look at it
(Siobhan) Had you ever heard of- (Doug) no I had no idea.
(Siobhan) So what did you do next? (Doug) Oh, of course, I went on the Internet
(Doug) Yeah, and it's kind of scary when you look at it, right? (Siobhan) So what we're talking about here, Wegener's, the other name for that is
granulomatosis with polyangiitis
So these days are calling it GPA
Apparently, Wegener was a Nazi and so now we don't, we don't
We don't call it that, even though all of the internet you still see Wegener's everywhere
(Siobhan) GPA is a rare autoimmune disease
(Siobhan) Normally the body makes antibodies to attack foreign things like bacteria
(Siobhan) But in autoimmune diseases, a person has antibodies that attack their own body. In the case of GPA,
(Siobhan) The antibodies are attacking small vessels and the most common organs to be involved are
(Siobhan) Lungs, kidneys and airways, so your ears, nose, sinus, mouth
So anyway, the next day we went in to see him, Dot and I
(Doug) And he mentioned these medications (Siobhan) So Doug was started on an
(Siobhan) Immunosuppressant called prednisone and
(Soibhan) Cyclophosphamide the improvement was immediate and his symptoms just melted away with the first dose of prednisone
(Siobhan) Eventually though, he was switched over to azathioprine, a medication with far fewer side effects then cyclophosphamide
(Siobhan) Then after a few years of doing well, he was slowly tapered down off the azathioprine altogether
And I think I came off a little too quick. I had this strange thing again 2:00 in the morning,
I woke up and
I had a severe pain in my chest like somebody stuck a knife in it, and I thought I was having a heart attack
Woke up Dot, and and she called the ambulance
But apparently I had a five centimetre nodule on my right lung here
(Siobhan) At the hospital doctors confirmed that the pain was caused by the nodule in his lung not from the heart
(Siobhan) The most likely cause for this nodule was a flare of his GPA
(Siobhan) But a bronchoscopy was done to rule out any infection or cancer
(SIobhan) So a camera was put into his lungs and a little piece was taken to make sure they knew exactly what it was
(Siobhan) Then, once again, he was restarted on the incredibly strong medications to suppress his overactive immune system and control his disease and
And apparently, like, cyclophosphamide has a heavy-hitter rate and
From what I understand there is only a certain amount you're supposed to have in your lifetime. Mm-hmm. So
Honestly, like if a relapse ever happen again
(SIobhan) It's scray. Yeah, yeah, that's very scary to think what will you do for treatments and
Well you hope that whatever option they have
(Dot) To use, works, right. (Siobhan) Yeah. Yeah. Yeah
My life has changed, you know, but I've gotten used to it
I can still,
(Doug) You know, I can still walk eight kilometres, which I like to do when I can, but two hours later I'm, I'm done
Yeah, I get it. I get very tired easily
(Doug) I sort of had this thing where I try to control the things that I can control. (Siobhan) Mm-hmm. (Doug) And and that's all I can
Do, you know. I can't control the outcome in this. I'm over my doctor Ken. Yeah
Thank you so much
Thank you for coming
(Siobhan) It was so great to meet up for a chat (Doug) Yeah, it was a pleasure
Thank you
(Siobhan) Bye (Doug & Dot) See ya
So we just got home and it's just been such a great day and I want to really
Thank Doug and Dot for opening up their home, opening up themselves to telling their story here
It's such a reminder that it can be a big challenge to diagnose rare conditions like this and also to see someone who's so
Positive and so resilient through the process is, is really inspirational
So if you felt something or learnt something from this video, share it, because I really believe that
We can make a more caring and empathetic world if we start to understand what everyone is going through
The challenges, what they're overcoming and we could be stronger for it
Anyway, maybe I'm just being idealistic, but I, I actually believe it
If you like this video
You might actually like this other storytime about a young man who lost part of his spleen because of this crazy
Diagnostic dilemma and I'll take you through it. Anyway, don't forget to subscribe like comment all of those good things
And otherwise, I'll be chatting with you guys next week
So, bye for now