Warning, this is going to be long, even though I am going to try and keep it short. It also contains one of my most hated things – self-diagnosis. I have had time to go back over my lab work and CT scans and put that together with what the doctors told me at the time and create an explanation for what just happened back there.
The incredible train wreck that was me having a simple laparoscopic gallbladder removal surgery.
First most important point? Nothing is simple when you have a severe autoimmune disease.
Anyway, start at the beginning.
I was admitted to hospital on Friday afternoon and had my gallbladder removed. No complications, simple surgery. I was discharged around lunch time on Saturday feeling way better than I expected to.
I got lucky, I thought. Wow, sometimes it works the other way! I was really feeling fine. Pain was controlled. I had four incisions, each 2-3cm, they weren’t very painful. They were clean, no infection. Not so much as a minor discharge.
Then around 3pm I started to get a stomach ache. It seemed a little bit like another gall bladder attack. It came on after I had a light meal. Then severe, sharp pain. My belly had been bloated from the surgery (they fill your abdomen with CO2 gas) but now it was severely distended and I looked about 5 months pregnant. I felt nauseous, and feverish. I took some oxycodone, because that’s all the hospital would give me, anyway.
Over the next five or six hours the pain increased steadily until it was excruciating. I had a raging fever, I couldn’t take a deep breath, my whole belly was bloated and tender, and my heartrate was well over 100 bpm. I had taken about 80mg of oxycodone total and I was still in terrible pain. I couldn’t stand straight.
I called the health phone line, who advised me to go to hospital.
I hate hospital. I hate the ER. I NEVER go to the ER. I’ve gotten such poor treatment there in the past, that I figure my chances are always better at home. All they do is give me pain meds (maybe) and I have those anyway. I usually have better drugs than the ones they want to give me. So what’s the point?
By 9:30pm I could stand it no longer. I was sure I’d popped a clip or done something internally. If all that oxycodone wasn’t touching the pain, I decided I needed to go to the ER.
I called my ex-husband. He took me down to the local (small) hospital because the big city hospital is a joke and I’ve been mistreated there before.
He stayed until I was seen and it was clear I would be staying. Then he took our son home and left.
And then the fun really began.
The staff at my local, small hospital were great. They started me on morphine. Plenty of it. Took me for a chest x-ray when it had taken enough of an effect so that I could stand up.
X-rays showed gas in the abdomen.
This normally is indicative of a perforated bowel. And that’s a pretty darn serious complication of recent surgery. BUT in the context of having just had my gallbladder removed, it should have been considered normal. They pump your abdominal cavity full of gas, remember?
But the doctor at the small hospital was not very experienced and he told me that I had a perforated bowel and needed emergency surgery and a transfer to the city hospital (just over the state border and only 20 minutes away).
So I was terrified.
I was transferred in an ambulance to the large city hospital, arriving there around 1am. I had a great nurse and she kept up the morphine. She took bloods and an ER doc evaluated me immediately and called for a surgical consult. At that point, they explained that gas in my abdomen was what had caused concern, and they did not believe that it was a perforated bowel.
No emergency surgery.
Huge relief. The one good thing about being told you have a perforated bowel, is that all the other diagnoses that come after that seem pretty tame. Pretty manageable.
The bloodwork showed elevated pancreatic enzymes, elevated white count and an elevated CRP – 22. That was novel for me, as even during my worst flares, my CRP stays firmly normal. To have it elevated, even if not that high, was quite entertaining.
So the doc said it was pretty clearly pancreatitis. A very common complication post gallbladder surgery. He explained that the pancreas can become inflamed and irritated by the surgery. Or a stone can be lodged in the pancreas or the duct. He ordered a CT scan to check for those possibilities.
CT scan showed mild pneumonia, and partially collapsed lungs. But this was also mild, and the reason I couldn’t take deep breaths. The pain I had on breathing was labelled ‘pleuritic’ and one nurse mentioned pleurisy. Doc ordered to keep the pain relief up, so that I could work on filling my lungs.
It’s about 4am by now. Still in the ER, but it’s clear I’m going to be admitted to the surgical ward for observation. They added IV antibiotics to the mix, because there was a lung infection and high CRP. Cover all bases.
By 7am I was admitted to the surgical ward, and the pain was well under control. The attack of pancreatitis was over. I could breathe, but deep breaths still brought about very sharp pain. They wanted me to eat something to see whether the severe pain returned, as pancreatitis often recurs after food, I was told.
By the time I was admitted, breakfast was done, so they grabbed me a few crackers and a cheese stick. I was feeling and looking really well to them by then, so I wasn’t really an interesting case anymore.
I was just someone taking up a surgical bed that someone else needed.
It was clear they thought I should go. And I was happy to go. I wanted to go! So they gave me the crackers and a cheese stick around 10am. I lay around for another hour and at 11am a doctor wandered over and told me I may as well go home.
Which is weird, because at that point my CRP was around 87. Four times what it was yesterday. There was quite clearly still a problem, but not a very interesting one. My pancreas had appeared normal on the CT, so they were no longer worried about pancreatitis.
They gave me all my labs and CT scans and organised all my discharge paperwork and I was more than happy to go home. They gave my endone, and antibiotics to continue with, and told me to come back if the pain recurred.
Scary experience, but on the whole, I was feeling very grateful, because it WASN’T a perfed bowel. And while pancreatitis is excruciating, I wasn’t in any danger. Just pain.
And pneumonia? It was mild and I’ve had that before.
So I went home. That was the second huge important point. I should have stuck around and had lunch. Two crackers and a cheese stick is NOT a meal and just because you can hold those down without vomiting or doubling over in pain, does not mean your attack of pancreatitis is in fact over.
I was still well doped up on pain meds.
Later in the afternoon, around 3pm I started to feel bad again. So I avoided food. I wasn’t hungry anyway, even though I hadn’t eaten a real meal since before my surgery days before.
Anyway, you know what happens next, I’m sure. By midnight I was in severe pain. Again I took lots of oxycodone. More at 3am. More at 6am. Horrible pain. The same pain. I couldn’t get up when the kids did for school. I NEVER stay in bed. They were worried. I hauled myself out of bed so as to show them I was ‘fine’. Once they were on the bus I collapsed on the couch.
And then I started to feel a little better. I figured the attack was over. What’s another 12 or 13 hours of pain, really?
I decided to eat something to see what would happen. A sandwich.
Instant return of horrible, doubled over pain. I couldn’t breathe again. The pain was everywhere, belly blown up like a balloon, nausea, racing pulse and not able to fill my lungs.
I called my ex-husband and asked him to take me back to the ER.
I was taken straight through and given morphine. I thought it was all going to be OK. I’d left there just 24 hour previously. I thought it would be a simple thing. They would give me morphine. They would do that ultrasound they talked about doing to see if there was a stone still lodged somewhere. And they would keep giving me morphine! They knew what was wrong with me, they had all the reports and diagnoses from the day before.
I was wrong.
They put me on a gurney and put me in an isolation room. And ignored me.
After two hours I told my ex-husband to leave. Do what he had to do, and then head to my place so that he would be home when the kids got home from school.
After he left I was taken for another chest x-ray.
Then I was moved to another room. And ignored some more.
I was on that gurney, with no pillow, no blanket, in a freezing room for a total of seven hours. In that time four people spoke to me. The ER doc told me they were waiting on a surgical consult to come down and assess me. Until that happened, she didn’t know what to do with me.
She said that my CT was clear so she couldn’t find a source for the pain. But she would give no more pain meds.
I didn’t care. I brought in my own stash. I always bring my own stash now. Been there, done that. I told her I wasn’t there for pain meds. I was there for reassurance that there was nothing serious wrong post op. She said until surgical came down, she couldn’t be sure of that.
I didn’t see her again.
There was no nurse taking care of me this time. By six in the evening I was feeling fine and was considering walking out. I called for a nurse and asked about that.
She said ‘What if the pain comes back tonight? Then you’ll just have to go through this whole process again. Better to wait a little longer and get up to the ward.’
Seemed logical. Much as I wanted to go home.
Finally the surgeon showed up with his little band of followers.
He declared that as my blood work was clean and my CT was clean, I probably had an ulcer.
I couldn’t believe it. All the workups yesterday were being ignored.
I disagreed. I told him my CT had shown things yesterday and my bloods had shown elevated enzymes. He gave me the ‘look’ and talked over the top of me. He never once talked TO me. He talked to his minions about me, but not to me directly.
He pointed out the pretty severe bruising on my abdomen to the excited young interns or residents or whatever, and said:
“She has some bad bruising. She probably has a little muscular pain, and along with a hysterical reaction to the appearance of the bruising thought there was something seriously wrong.”
I shit you not.
He really was trying to say that I got all scared by a few little bruises and came running to the ER because of a BRUISE!
OMG. The only reason that I didn’t rip his face off and shove it up his butt was because I was still in a little residual pain, and still doped after a few days of strong narcotics. I couldn’t believe this bullshit!
I’ve been told some pretty stupid, ridiculous, downright offensive crap by doctors. This took the cake.
I again told him it was NOT ulcer pain. He asked how I would know?
I said because I’ve had an ulcer. He didn’t have an answer for that, but still insisted that an ulcer was likely, being that the pain worsened after eating.
I gave up. I could have harped on about my elevated pancreatic enzymes and that pancreatitis flares after eating as well. But why bother? He was never going to listen.
He asked me if I wanted to be admitted or go home.
I said I wanted to go home but I was afraid if I did that the pain would return.
So he said he’d admit me, and feed me and give me an antacid and see if I was fine.
He was purposefully patronising and trying to make me look like an idiot in front of his students. I was a case study in female hysteria for them. And pain med seeking.
Clearly, in his opinion, I’d come in yesterday and got all the good drugs. Now I wanted more today.
He had known about me since 11am that morning. It was now 6pm. He had purposefully ignored the consult because he didn’t want to do it. I wasn’t worth his time. I am a ‘chronic painer’ and not a real patient.
By seven o’clock I was transferred back to the surgical ward.
I was moved to a bed that had no blanket or pillow. And left there.
An enrolled nurse came to see me, and I asked her for pain meds. She said they couldn’t give me any. They weren’t written up.
I said they were written up yesterday. I was here only 24 hours earlier and received my usual mediations just fine then.
She said that didn’t matter. That was yesterday and there would be no pain meds today.
I waited until she left and grabbed some Endone out of my stash. Two hours later I asked again. I asked for my slow release meds. Again, she refused. She said she needed a doctor to order it. I asked if she could get a doctor. She said there weren’t any.
I asked for a pillow. There weren’t any. I asked for a blanket because I was cold and have rheumatoid arthritis. There weren’t any spare. I would have to make do with the sheet. I was only wearing the lovely thin gowns with the open backs and some PJ bottoms I’d brought in. The IV (saline) had leaked and my gown was wet. The cannula had also bled a lot (because I moved my arm too much!), and my gown was grotty and bloody, as well as wet. There were no more gowns. I guess they keep them with the blankets and pillows. Maybe there’s a little room full of them, and the doctors hang out in there having pillow fights or something.
So I just waited there, shivering under my sheet, in my wet, dirty, bloody gown. The abdominal pain was completely gone, but my joints weren’t happy. I kept dosing up on my stash of Endone and dreaming of my bed at home.
I seriously contemplated calling my ex-husband and asking him to come and jail break me. It was appalling. I don’t think I’ve ever been treated that badly before.
It was clear I was being a pain in their ass. It was clear they thought I just wanted meds. (Why??? I have my own fucking meds! Why would I put up with this crap for meds that I already have in my bag???).
Somehow everyone today seemed to think all my bloodwork and CT scans were clean, when yesterday I had clear pancreatitis, pneumonia and possible pleurisy. From the same set of results, two sets of doctors drew two completely different conclusions and diagnoses. I know which set makes more sense to me. I FELT it.
There is no reasonable explanation. I think the strict hospital hierarchy is what brought me undone.
The fact is, the ER called up to Surgery at 11am. Surgery decided I wasn’t worth looking at. So the ER docs couldn’t do anything with me. They just had to wait. I don’t think I can blame the ER. They certainly could have made me more comfortable though.
And they could have advocated for me. Made someone come down and look at me.
By the time the surgeon came down, it was the last thing he was doing for the day. And he was going to make an example out of me. I was sub-human as far as he was concerned. And the nurses on the ward knew to treat me as such.
And then everything changed again. Huge lesson number three – hang in for the shift change.
10pm. New nurse. Lovely young girl. Absolutely horrified at my blood covered gown. I asked her to remove my IV which she did immediately. It was only saline and I was well hydrated and no longer nil by mouth. But before she did that she got me a pillow. And a blanket. And she asked me if I would like some HEAT PACKS!
She checked my chart and came back with a registered nurse who dispensed some Endone. She apologised that she couldn’t get me my usual extended release formulation. She was genuine.
Once the IV was gone, I could take the stupid gown off and put my own T-shirt on. I pulled the curtain around and I got into bed, with my pillow, my two blankets, my three heat packs on my most painful joints, feeling the Endone starting to kick in and I just sobbed.
Her kindness broke me. Made me realise just how awful all the other people had been treating me that day. She treated me the way I should have been treated. No, I wasn’t a critical patient. I was never going to die. But I was pretty damn sick. And I was alone. My ex-husband WOULD have stayed with me. I sent him home to take care of our kids, that was my call. This is in no way his fault. I should have called my sister or a friend to come and stay with me and agitate for me.
Important lesson number four – never go it alone. No matter how sick you are, they can treat a lone patient, with no one else watching, any way they please. And they do.
I was exhausted. I needed a good cry and then I slept.
During the night I heard a conversation. A truly terrible conversation which helped all of this make sense. I will write about that next. Sorry for the cliff-hanger.
In the morning, my surgeon, the one who performed the original surgery rounded on me. With the gaggle of excited residents or interns or whatever.
He told me I should stay in for a gastroenterology consult. I politely refused. (Its NOT an ulcer. Or if I have an ulcer, its an incidental finding. The pain that brought me to the ER was NOT ulcer pain!)
One of the interns told me I could do it as an outpatient. She arranged everything. She was very kind to me. I suspect she had been there for the whole case and didn’t much like the way I’d been treated either. There’s hope that she’ll be a great doctor one day. She was thorough and came to see me after the surgeon had left the ward and asked me about my rheumatoid. She asked if I minded talking about it, because she wanted to learn more about it. Maybe she’ll be a wonderful rheumy one day.
I had breakfast. It was fine. I had lunch. It was fine. My ex- husband came and picked me up and took me home.
Never again will I go to the ER. I know I said that last time, but now it’s for sure.
That hospital may have some of the best doctors in the world working there. But it also has actual sadists in charge. The way I was treated was cruel. Sub human.
And incredibly inconsistent. When I was released, I still had a CRP of 57. Two days earlier they insisted that 22 was too high for me to leave. But 57 is OK.
There is nobody watching the watchers in the hospital system. There are NO checks and balances in place. No redundancy. It is a dictatorship, with the highest ranking doctor making unilateral decisions that no one else has the authority or balls to challenge.
Patient care is not the highest concern.
And where am I now?
Home. Thursday. Almost one week post op. I still have some bloating, but that’s normal. I still have some abdominal pain, but it’s normal. My incisions are healing nicely, though they are tender. The bruising is still there, but at no time have I panicked and decided I needed to run to the ER cos my bruises are scary!
I’m on a normal recovery path now, I think. I’m resting. I hope that I will keep improving with no further problems.
I’m confident in the diagnoses that the original docs offered up. I have copies of the labs to back them up. But I will never understand how the doctors the following day could read the same results so differently. And I have no idea why I was treated so horribly the second day. I should have been a simple case, given pain relief and more antibiotics and observed. Possibly more investigations, like that ultrasound they kept talking about, but never got around to doing.
It just shows you what one obnoxious doctor can do.
But the fact is, while I was never in danger, doing NOTHING can kill people. I would put money on the fact that people have died because THAT doctor decided it wasn’t worth his time to walk the 40 meters from the surgical ward to the ER to evaluate a patient.
I want to complain. I want copies of all my records. I want names goddamnit!
But I’m not sure I have the energy. For now I’m going to focus on rest and recovery. And staying OUT of the ER.