I went through the medical records yesterday. The Chicklet’s friend came over for a sleepover, and her mother is a nurse. I barely know her, but I asked her some questions. And she helped me. Up to and including literally letting me cry on her shoulder. And she confirmed that the amount of pain meds they gave me was woefully inadequate. There were no post op steroids. They did no investigations into the severe back pain or the excruciating headache. No head CT (those are expensive). No bloodwork. I should have been transferred to the major hospital by the second day.
My surgeon clearly believed that I was scamming for pain meds, and she actively refused to give me pain relief above the equivalent of what an opioid naïve patient would require. I take the equivalent of 80mg of oxycodone daily, so what she did amounts to very poor medical judgement and on a human level, abject cruelty. Not once did I complain about my incision wound. The headache was so bad I barely felt the incision. I had to get myself to the bathroom by day 3 because the nurses wouldn’t help me, so that should have told her that the incision wasn’t my problem. My head was.
On day 4 she finally agreed to reinstate my usual opioid dose.
Her decision to treat me as an addict was wrong on every level. Even if I were an addict, you don’t cut an addict off cold turkey. Even if she were right, she was wrong.
Hindsight being what it is, severe back pain, and a severe headache could have been withdrawal (giving me my usual pain medications would have sorted that out within an hour).
It could have been adrenal crisis (giving me IV steroids would have sorted THAT out within an hour).
It could have been due to massive blood loss (a simple blood test would have told her I was bleeding out, and she could have treated me). It took another week and another hospital to run a basic blood panel which told them how much blood I’d lost. But of course the bruising was also a pointer…
It could have been a stroke, intracranial pressure…I don’t know what else. Serious stuff.
A headache of that severity, which lasted that many days was never going to be a migraine. It was a sign of a serious medical problem. The working theory now is a brain bleed, but that’s based on symptoms and an AVM on MRI….circumstantial evidence and a best guess you could say.
And she gave me Panadol.
I wasn’t lucid, but it’s all there in the records.
First she pumped me full of estrogen tablets, the she took away my metformin, then when that didn’t work, she tried imigran, then pethidine, then imigran again, and then she got pissed off and said she knew nothing about migraines, and she’d arrange a neuro consult. For Monday night, 8pm,because it was a long weekend and she was going away.
The doctor at the second hospital told me straight that I would have been DEAD by Monday night. I had the blood transfusion in the early hours of Monday morning. 4:30am or so, they hung the bags, after waiting as long as they could. They don’t like to transfuse, there are risks and long term implications. They don’t do it unless they really need to. Without that transfusion I would have died. I couldn’t remember when I had the transfusion. I saw my kids before, that afternoon. I wanted to see them again after, because after the transfusion I realised I was in deep shit. But after the transfusion my ex was too busy to bring them in. Work was more important.
I’m pretty sure my sister offered to bring them in, but I couldn’t work out the logistics. I just wanted them, badly. That was the extent of my abilities at that point. From Monday until I went home I had only one visitor. My ex mother in law. A true shock. I will be forever grateful. I messaged my closest friends. I said ‘help me the pain is killing me I think im dying’. And I got no answer. I still have the message. I need to delete it.
People who want to pick apart the details of my story or say stupid things like ‘why didn’t you fight harder’ are forgetting that I was in excruciating agony. The worst pain I’ve ever felt. A ‘10’. And I really don’t care if I didn’t look like that to you. When I’m in pain I get quiet, not loud. I get more and more quiet and retreat into myself to deal with it. And yeah, I was walking and talking. Shit, eh? But hemoglobin doesn’t lie. And at my very, very worst, I still tried to post positive, funny stuff to my page. Because I didn’t want to upset people who were too far away to help me, no matter that they wanted to.
If my sister had not come down and advocated for me, and had me transferred to the second hospital, I would have died. I couldn’t advocate for myself, I was totally out of it, I had no ability to think logically or clearly. When I got to the second hospital I STILL had to wait 4 hours while they observed me, to see if I was really in as much pain as I said I was, because of my surgeon’s judgement that I was seeking pain meds.
But they gave me a head CT immediately, which was clean. CTs are great at finding large bleeds, but they miss small bleeds and clots all the time. So they gave me blood thinners and sent me to the stroke ward on high obs. They didn’t know I had an internal bleed at that point, the possible stroke was all they knew about. But ofcourse giving anti-clotting medication when you’re bleeding internally is a REALLY bad idea, and that made things worse…but they did the right thing with the information they had. My BP crashed. My heart rate spiked. I was a mess. All I cared about was that they finally gave me morphine…but the whole thing was a total cluster f*ck that should never have happened. It wouldn’t have happened if my surgeon wasn’t a judgemental bitch. She should never have taken me on as a patient, because we discussed my opioid use at the very first appointment. It wouldn’t have happened if I’d had someone advocating for me from day one, but I didn’t. I don’t have a partner or a close family. I messaged many people during that week…finally I messaged my sister. Whom some might say I should have messaged immediately, but you don’t know my family. And I think in fact she messaged me. But you’re right, I should have messaged her immediately, because SHE came. My sister arrived, on day 5. And she saved my life.
You shouldn’t need a loved one to save you from a hospital though. You really shouldn’t. You shouldn’t be bleeding to death and be in a HOSPITAL and not be getting treatment. They pushed fluids. That was the right thing to do, sure. But that’s standard. I wasn’t eating, I was on clear fluids, when I tried toast, I couldn’t keep it down. I couldn’t stand up without becoming overwhelmed with nausea and dizziness. The physio’s notes are clear. And they get more and more annoyed with me, for not trying hard enough! “Patient unable to walk more than three steps without collapsing due to nausea and dizziness.” “Patient refuses physiotherapy exercises again.” “Patient complains of pain and refuses to try.”
Damn…maybe the patient was critically ill. Maybe the patient wasn’t a hypochondriac, drug seeking f*ckwit. Maybe the patient needed help, not judgement.
In an honest medical system, wouldn’t you prefer ten drug seekers to get their hit than for even ONE person to go through what I went through? To be tortured the way I was tortured? And I WAS tortured. I was in the place where people go for healing. And I was ignored, judged, and despite a blood pressure of 89/45, tucked into bed and left…alone.
Hindsight being what it is, I was in hypovolemic shock, my vital organs were starved of oxygen, my heart was damaged, my brain was damaged, my kidneys were damaged (and they started to fail two weeks later), my liver was damaged…losing all that blood really messes up a body.
It’s hard for me to read these records. I did it alone a few times and stopped. I was too upset. And the reason why is the sheer cruelty with which I was treated. There was one medical resident doctor, she was a fairly young woman, kind and caring and of Asian descent. I have a picture in my head of her, but I’m not sure I would recognise her. She tried so hard to help. She ordered pain medications…I tried to find her name on my charts, because I KNOW the meds got as close as inside my room, a nurse had them in those little cups that look like plastic shot glasses, and it was endone and targin cos I know what those look like, before another nurse came in and told her to take them away because Dr Xxxxs had said NO extra pain relief.
She tried. People do try within the medical system, but it’s a strictly hierarchical system, and the surgeon is the top of the heap. And in our private system here in Australia, there are no checks and balances, her word is law. In the public system there is more review, more checks and balances. But I was in a private hospital and anyone who argued with her was putting their job on the line.
I know I would have. But I’m like that. I understand why they didn’t.
You have to be a human being first. Whatever your job is, second. It’s like the Nazis at Nuremburg. “I was only following orders.” Nope. The nurses, doctors and physio’s lives weren’t on the line. Mine was.
Again, I don’t care how I looked. I’m a polite person. I’m gentle by nature. I’m soft, and I’m unbelievably strong. It’s not a good combination. If I mention pain it’s at least a 7.5. If I’m crying it’s an 8. If I’m begging it’s an 8.5. If I’m sobbing and asking Jesus to save me it’s a 9. I told a nurse ‘10’ one night. She couldn’t know that I’m the kind of person who would NEVER say ‘10’. But she should have done something about a ‘10’ regardless. Called a doctor. A blood test would have sorted it out. A blood test would have shown them that I was critical. They didn’t do it.
The Chicklet’s friend’s mother advised me to get a lawyer and I will. Her reaction sealed it for me. I barely know her. I like her. I’m a little embarassed because I needed her so much, and I know her so little. I asked her if I could please hug her. She said “of course”. She is a midwife, she assists in caesareans so she knows about abdominal surgery, wound care, the pain involved. And she works with drug addicted mothers, she works closely with the pain team, and she knows how pain medication seekers are treated in the public system.
I knew none of the previous, I only knew she was a nurse, from brief conversations at pickups and drops offs. Turns out she is a very kind person with a medical knowledge and experience that just happened to fit perfectly into the questions I was asking.
She did not have time to stay with me and talk. She had lots she needed to do, that’s why she was dropping off her daughter to stay at my place in the first place. She didn’t even know I’d had surgery, let alone the nightmare it became.
But she didn’t leave. She sat with me and answered my questions to the best of her knowledge, she deciphered illegible handwriting with the experience only a nurse has, and she gave me a big hug when I asked for one.
She was here about 40 minutes when she needed a quick drop and run. She was kind. She was honest. And she knew when to make a joke and when not to. She knew when to let the tears fall. And she let me hug her, and she hugged me back. And she’s taking the Chicklet to the coast in the school holidays as well. I can’t. I would love to take the kids away. I would love to go to the beach myself. I can’t.
She told me to get a lawyer, stat. My surgeon was incompetent, arrogant and cruel. My anaesthetist was also to blame, and the hospital RMOs who saw me were useless. One of them tried to have me transferred upstairs to the high observation unit but he was overridden by my surgeon, who was still convinced I was medication seeking. Probably because I DID specifically ask for morphine. Drug seekers do that you know. They ask for their drug of choice, by name. So do people who’ve been in severe pain enough times to know that IV morphine works quicker than anything else.
So I will get a lawyer. And I will turn it all over to said lawyer. And if they say it will be a hard fight, I will decline. I am not capable of a hard fight. Because somehow I have lost all of my local friends through this and my sister is now in the U.S. But if the lawyer says I have nothing to lose, then I’m going to take it as far as it can go. And not for money. I’d love to have a lot of money, of course I would. But money has never been my over-riding driver.