I’m 34 years old and have three children aged 4, 11 and 12. I compete in rodeos, am active and love going on adventures.
I’ve had a few prior health issues. In 2016, I had a laparoscopy to remove endometriosis. In 2017, I had a haemochromatosis (iron overload) diagnosis, yet was anaemic. In 2018, I had a tubal ligation due to placenta accreta from the birth of my youngest. In 2020, my horse fell on top of me during a rodeo and my flank and abdominal area were trodden on by a horse and cow. I checked myself out of hospital the next day as I felt okay. I’ve been on a waiting list since 2020 for another laparoscopy for pain, mainly at period time. I’ve had sinusitis for years, a skin condition since I was a kid, and sore joints which have never been diagnosed, over the years. Nothing has stopped me working or doing rodeo.
I previously worked in childcare, but last year did a Certificate Three in Community Service and got a job with the Department of Children Services. During the pandemic vaccination for the role was mandated. I’d had every other vaccine, but there wasn’t much data supporting the safety of this vaccine. I didn’t want it, but because I’d recently got the job, I decided to have my first Pfizer jab. This took place at my rural hub on 13th September 2021. I felt sick afterwards and was crook for about a week. I took Buscopan and Anagraine nausea tablets. I hadn’t told anyone I’d had it, as I’d been against it. They just thought I had food poisoning, but it wasn’t.
I had my second Pfizer jab on 5th October 2021. I was fine on the day but woke up the next day feeling really sick. I went to grab food from the pantry and had a rush of heat through my body. I also had a weird tingling heat sensation from my face to my hands and feet. It felt like my face was pulling back and in that moment I projectile vomited, and a migraine came. I took Panadol, Nurofen, Gastrostop and electrolytes. The chemist gave me more Anagriane but it didn’t work. My stomach was in so much pain, that I took Buscopan and ended up with diarrhoea.
That weekend I had sweats, severe vomiting and diarrhoea, but was still too embarrassed to tell anyone why. I tried to wait it out, but a week later, on 12th October, I couldn’t function and had full body tremors and blurred vision. I took my kids with me to Gunnedah hospital. I told the nurse I’d been vomiting for a week and that I was faint and needed help. The doctor wasn’t there and wouldn’t come in unless it was life threatening. She wouldn’t triage me until I had someone pick up the kids. The doctor rang and said to give me two bags of IV fluid and ondansetron for the nausea. I couldn’t control the muscle contractions in my legs and was in excruciating pain. I was told I had anxiety and that was making it happen. I was given an ondansetron there and one to take home. I was requested to return the next day to see the doctor. I did and was prescribed more.
Over the next few days, I had intermittent shakes, fevers, vomiting and my heart would beat super fast. When that happened, I felt like everything was white and I was getting sucked out of my body. I tried to just breathe. On 22nd October I was worse and rapidly losing weight. I had Sustagen to try and get nutrients in before spewing, and the little food I could swallow would come out either end undigested. I went back to hospital as I was still in pain. The doctor gave me an ultrasound to rule out gallstones, but said it wasn’t his area of expertise and the scans would be sent to my GP.
I went to my GP to fill her in. She didn’t think it was vaccine related because of how long symptoms were going on. She did bloods, specimen tests and gave me more ondansetron, but it wasn’t working. I went back on 27th October with my symptoms still ongoing. My iron showed low transferrin and higher than normal ferritin, which happens with infection. I also had a bad headache, urinary changes and bladder pain. She found I had a middle ear infection and treated me for a UTI. I’d never had a UTI before. I was prescribed Ibilex 500 for the infections and Famciclovir, a shingles medication, as I’d had bumps in my mouth and was worried about breaking out in cold sores. After this visit I went further downhill. I struggled to walk and breathe and had a tight chest and tight limbs. I felt like my whole body was being constricted by something and I was going to die.
I lay on the trampoline in the hot sun, then had a cold shower to try and shock my body that felt like it was failing. I had mouth ulcers, oral thrush, nausea, a UTI, a vaginal infection, abdominal pain and I was pooing mucus. I also had heart palpitations that got more intense when resting or asleep. I was scared to sleep but didn’t want to go back to the hospital.
On 31st October I fainted in the shower. Everything went white and blurry and I freaked out. I was on the floor counting, trying to slow it all down. I went to Gunnedah hospital again. This was the third time in three weeks. The nurse doing my vitals said, “You can’t keep coming back here, you need to see your doctor”. The hospital doctor told me it was anxiety causing the stomach pain and vomiting and that I should take a multivitamin, eat protein and follow up with my GP for a gynaecologist’s appointment. However, his internal notes say, ‘No abdominal pain and no urinary symptoms, (I was taking the Ibilex for the UTI), Otherwise well. Follow up with GP for gynaecologist referral for endometriosis’. I told them I’d fainted in the shower and they wrote ‘near faint episode’. They’ve lied in every discharge summary, making things look less severe .
I took multivitamins but kept spewing and had pins and needles all over my body. The trampoline hot/cold routine gave some sort of relief. At this time, I’d struggled to get words out, breathe or focus. It was as if I wasn’t capable of talking. I counted and tried to say rhymes out loud, trying to assure myself that I was okay. The only other option I felt, was to lay in bed and die.
By 2nd November 2021 I had not eaten in days. My eyesight had started going and I couldn’t look after the kids or myself. I couldn’t brush my hair, the glands under my armpits were swollen and I was leaking fluid out of my milk ducts! My neck was inflamed and I couldn’t move it. I felt like I had a knife through my chest, going into my shoulder and middle of my back. I felt like I was going to blow up.
My friend drove me to the Tamworth hospital. I told the nurses what happened at Gunnedah Hospital. They were shocked and said to file a complaint. My notes from Tamworth specify, ‘… after the second Pfizer vaccine’ and list my symptoms. While waiting I noticed my skin had started to sag off my face, arms and legs. The nurse said because I was so dehydrated, my skin was detaching from the muscle. It was gross! They put me on IV fluids, gave me Endone for the pain, ondansetron and pantoprazole. I told them I couldn’t see properly or drive. The discharge summary states, ‘Patient was discharged in care of self’. They’d written my friend a medical certificate for time off work to care for me but didn’t have this in the notes at all! At this point I started journaling what was happening to me. I was scared I was going to die and people wouldn’t realise what had happened. The doctors’ notes were making me look mentally insane.
On 4th November 2021 I forced myself to eat and had mucus coming from my bowel. I had severe stomach pain and felt food being digested throughout my whole colon, from the left to the right. I went to Tamworth Hospital again and had a heap of scans, which were all fine. One had said, ‘Ill-defined tissue on vaginal vault wall’. Nothing showed for my bowels, but I later found out some bowel issues can’t be picked up by scan. They wanted to send me home but I was upset. A nurse took me to do a vaginal swab, thinking maybe I had a vaginal infection, as sometimes that can cause bowel issues. I was sent home and told to return if the symptoms got worse.
On 6th November the mucus from my bowels had become thicker and more yellow. My mum has ulcerative colitis which can be hereditary and she thought it might be IBD or colitis. No-one had checked the mucus from my bowels, so I bagged it and took it to ED. When speaking to the doctor I was tremoring and had sweat rolling down my face from the pain. He commented, “I see you’re in pain from the sweat coming off you. We’ll get you some pain relief”. I showed him the mucus, he questioned whether it came from my vagina and requested another internal. A lady from gynaecology came to ED, pulled the curtain and did an internal. She found no mucus in my vagina and told him, “I think it’s a case of constipation”.
The doctor said he couldn’t test the mucus as it was contaminated and there was nothing more he could do. I was in tears, telling him they couldn’t let me go home like this. He put his hand on the bed and said, “Kacy, are you sure there’s not something at home that you’re afraid of?” I said, “The only thing I’m afraid of is dying”. He gave me Endone and said not to come back unless I’m bleeding from the bowels.
On 7th November I woke at 3am. I went to the toilet in pain and passed a big blob of mucus from my bowels. It had blood streaks through it. It stuck to the side of the bowl, so I got a sandwich bag and presented to Tamworth ED again telling them I’d been in the day before. I waited hours to see a doctor. A nice doctor took me into a room and did a rectal examination. He looked at the bag and I said, “I’m sick of telling everyone the same thing, you can see there’s blood in it”. He looked through my notes saying it’s definitely not normal, but that if I had colitis they couldn’t verify it from a scan and would have to do a colonoscopy. He did bloods and put me on an IV. I was saying, “Thank you, thank you”. This hospital team worked together and actually addressed my symptoms. The nurse struggled finding a vein, but found one in my hand and got 7ml out, only by sucking it out with the syringe. She was surprised at how dehydrated I was. The nice doctor said he couldn’t guarantee what others would do after I was admitted. This was day one of five.
I told him my family would take me to Sydney if I didn’t get help here and he said I should go if that was the case. I was put in a room with three others. I was still in pain, hunched over the bed and losing blood from my bowels. The nurse made a recommendation for an urgent colonoscopy. They changed the ondansetron to metoclopramide (Maxalon) nand before the end of her shift, the nurse told me she had been disgusted with the state I was left in. She couldn’t believe I’d been left for so long and said I should make a complaint.
On 8th November a doctor and gastroenterologist separately came round. Both said they didn’t think it was colitis, due to the bloods and scan results. They were both rude and arrogant. The gastroenterologist asked me if I’d had anal sex or shoved anything up my bowels. He also told me my emotions control my stomach and then questioned my kids’ behaviour and how stressed I get at home. I told him my kids are great, I had no stress at home and I didn’t get sick until I had the Pfizer vaccine. They wanted me to eat and drink by mouth, even with oral thrush, ulcers and difficulty swallowing!
On 9th November, the vaginal swab results from 4th November came back as bacterial vaginosis. They couldn’t explain why, but gave me metronidazole and treated me with Salofalk enemas, which is a typical treatment for ulcerative colitis. This was to try and relieve the pain and bleeding in the colon, after they’d previously told me nothing led them to believe I had colitis.
I had a dietician visit due to my 9kg weight loss. She prescribed me Frusbian drinks to help with weight gain, but the sores in my throat made it hard to swallow. I asked a nurse what the white tablet was she was giving me, as it made me feel ‘funny’. She said it was an anti-nausea tablet called metoclopramide and, “…. it wouldn’t be making you feel like that”.
On 10th November I still had no answers. A psychiatrist came and said my mind was controlling my symptoms and making my stomach sick. I’d been taking pantoprazole twice a day to reduce the stomach acid. It wasn’t helping, so they simply suggested I was making myself sick. They gave me a primary diagnosis of ‘functional gut disorder’ and a secondary diagnosis of ‘health anxiety’. They also told me I was looking for things to make myself sick about. The psychiatrist prescribed sertraline, telling me the side effects were vomiting, which of course I already had a problem with. I’d been vomiting for weeks! She said people don’t want to take it because they think it will cover underlying issues, but could guarantee that wasn’t the case. She then referred me to outpatient psychiatry.
On 11th November, before discharging me, they made me take sertraline in front of them before I left my room. I was visibly upset. I had already expressed concern with two doctors and a nurse, that I didn’t want to take it. There were three other patients in my room who witnessed this.
They gave me my discharge summary and prescription before leaving. I went down to the hospital pharmacist to get the meds on the way out and told her the sertraline had made me feel funny. I was having tremors and showed her my hands. I couldn’t walk properly. She said, “Not to worry, just ride it out for the next two weeks. Then go to your GP to increase the dose. It’s more beneficial for you to take it than not”.
19th November 2021. I returned to Gunnedah hospital as I was no better. I’d done some research a few days prior and stopped taking the sertraline. I read about the side effects and that it takes a while to get out of your system. I told the triage nurse I was still taking the metoclopramide for nausea. I later found out those two drugs should never be prescribed together as they both increase serotonin which can create a serotonin disorder and can kill you. I couldn’t put my hands to my face or control my bowels. I was struggling to eat, had heart palpitations and was jittering from the inside, like I was holding onto a jackhammer. Metoclopramide also causes tardive dyskinesia and akathisia, which are drug induced movement disorders, explaining my tremors. The doctor told me I was having an anxiety attack and to up my dosage. I wonder how many others are being told they have anxiety, but are actually having side effects from medication and don’t realise?!
I rang mum crying after leaving the hospital. I hadn’t seen her since before my jab. She broke down in tears when I got to her house to stay a few days. During the night I woke up and screamed out to her as I couldn’t see or walk properly. She was having to hold me up. My heart rate was going 100 miles an hour. She took me to her local hospital on 28th November, because I couldn’t speak and my neck had locked up. The doctor shook his head and asked mum, without me hearing, if there was MS in the family. She said, “No”. He then asked me if this had all happened after the vaccine. I said, “Yes”. He shook his head and prescribed me Valium for the muscle spasms. He advised going to Sydney, as they didn’t have what I needed there.
I went to stay with family in Sydney on 29th November for nearly a month.
On 30th November I went to an amazing doctor in Miranda. She was senior and reputable. I believe she ended up saving my life. When I went to see her my body was locked up, I had tremors and looked like I had Parkinson’s. I couldn’t even hold a spoon to my mouth. She asked what I’d been taking and I told her sertraline and metoclopramide. She did blood tests, a rectal examination, neurological tests and an abdominal examination.
I showed her the discharge summary from Tamworth. She told me my diagnosis didn’t fit my treatment and that Maxalon wouldn’t be prescribed unless I had IBD (Inflammatory Bowel Disease). Nothing was written in my notes about this. She also said the blood and mucus from my bowels was not associated with anxiety. She said, “You have tardive dyskinesia and akathisia. I also suspect you have IBD”. She didn’t yet have the results to support IBD. She prescribed 5mg of prednisone, a week of Valium to help me sleep and a referral to a gastroenterologist, who I saw on 10th December 2021. I showed him photos of what I was passing and he said straight away that it was IBD. He also noted Tamworth Hospitals use of Salofolk aligned with symptoms of IBD. He requested an emergency colonoscopy, pulling strings to get me in within a week. He prescribed Mezavant, an anti-inflammatory for my stomach and increased my prednisone to 25mg.
The Miranda doctor kept me going back to her every one to two days to monitor me. On 15th December, I was still deteriorating. She admitted me to hospital that day, writing a letter to Sutherland Hospital for an emergency scope and wrote, ‘DO NOT DISCHARGE by any means. This patient DOES NOT have Health Anxiety’. She wrote a report telling them I’d lost 15% of my body weight etc.
I went straight to Sutherland Hospital and was admitted to my own room. I had IV fluids for three days and injections in my stomach. The second day I requested it in my leg instead, as my stomach was still in pain. I don’t know what was in that syringe, but something shifted. The nurse said, “It’s for clots, because the vaccine has the tendency to cause them”. I’d felt a tingling and believe whatever it was, put me on a path to recovery. They were trying to get my body well enough for a colonoscopy.
I had the colonoscopy on 17th December. The specimen report said, ‘Insufficient for diagnosis’. They required 3mg for diagnosis and only got 2mg.
On 18th December, I was having palpitations again. I buzzed the nurse and said, “I’m not anxious and I’m talking to you calmly”. She said, “Yes, I can see that”. I asked her to take my pulse. She immediately paged the emergency doctor and got the ECG. They checked my legs and took me for an emergency CT of chest and heart, checking for stroke and clots. No heart inflammation was found. This experience was validating and showed I wasn’t crazy. I was discharged that evening, after the fluids were finished and I was hydrated enough. I was recommended to follow up with a cardiologist.
On 19th December I followed up with the Miranda doctor and made the decision to go home for Christmas. My bowels still weren’t great, but better than they had been. She asked why I didn’t mention my heart and I said I thought she’d tell me it was anxiety. She did a referral for a Holter monitor and bloods back home and said she was worried about my care. I picked up a Holter monitor from Pathology the following day.
I had heart palpitations again after Christmas, went to hospital overnight for monitoring and was prescribed metoprolol, which is a beta blocker. It helped with my heart but made me feel really tired. I went to call the Miranda doctor to follow up but was told she was no longer working there. I wondered if she’d been stood down for helping people, like she’d helped me.
On 31st January 2022, I went to get a cardiologist referral from a local GP. She asked why I needed one. I mentioned the Pfizer vaccine and she went red with anger and refused to look at the Sydney documents on my lap. Instead, she looked at the Tamworth Hospital discharge summary saying, “There’s nothing wrong with you, you’re just trying to find things. Look at all your tests and they haven’t found anything wrong with you!” I asked about my Holter monitor result. She said she couldn’t find it, but that I just needed anxiety tablets and there are 20 different ones to try. By this point, I was not going to take anymore tablets.
I had searched online for cardiologists with great reviews, where people said they got in quickly. I found one who travelled from Sydney to a town three hours from me and asked her to do a referral for him. After the GP appointment, I learnt how to link ‘My Health’ to ‘MyGov’ to access all my pathology reports and discharge summaries online. The doctor who diagnosed ‘functional gut disorder’ and ‘health anxiety’, was also the requesting doctor who asked for a faecal calprotectin report on 8th November 2021. This was to diagnose and monitor bowel inflammation. Levels under 50 are normal and my level was 498! I had been constantly told my results didn’t indicate IBD, but this clearly showed I had IBD. This hidden information was detrimental to my care.
I had the cardiologist appointment within a week. He said 24 hours of Holter monitor data wasn’t enough and recommended a smart watch and phone app, saying that if it had a time and date, it couldn’t be disregarded. He did an echocardiogram and diagnosed me with sinus tachycardia secondary to metabolic stress. This was due to inflammation and dehydration, caused by a reaction to sertraline and metoclopramide. The appointment cost $700. I’d spent over $10,000 at that point, desperately trying to seek answers. I claimed fuel and accommodation rebate using the IPTAAS (Isolated Patients Travel and Accommodation Assistance Scheme) rebate form as the appointment was more than 100kms from home.
On 15th February 2022, I went back to the local GP for the follow up cardiologist appointment. I also needed another referral for the gastroenterologist in Sydney to get my pre-admission results. The GP gave me a hard copy of the gastroenterologist referral, along with the cardiologist report. I read the referral in the car and saw she’d put a diagnosis of ‘panic disorder’ from my appointment on 31st January 2022. She also noted that I was, ‘resistant to the idea and did not want the medication’. Had I not had that hard copy, I never would have known she’d put this on my records.
The next day I made a complaint about her to her manager who referred me to the head doctor. They wrote a new gastroenterologist referral, removing what the other doctor had written. I also happened to look at my Medicare records, even though it’s a bulk bill clinic. She had falsely charged a ‘mental health consult’ of $74.60, as well as $111.50 for a long consult on 31st January 2022 (my cardiologist referral appointment), to my Medicare! I was there for a standard 10 to 5 minute appointment only and did not have a mental health consult. I plan to take this further, because if she’s charging the government falsely for my appointment, what is she doing for everyone else?
My original and supportive doctor in Gunnedah has summarised everything for me in a full health report. This includes my history and goes up to the transient inflammatory colitis diagnosis, linking the diagnosis to the Pfizer vaccine. She’s leaving and wants to ensure I’m not mistreated again.
On 29th March 2022 I had a laparoscopy for Endometriosis under general anaesthetic. This goes back to my 2020 referral. When I woke up they told me they’d removed one of my fallopian tubes. The surgeon who tied my tubes in 2018, had used metal clamps and left one of the clamps attached to the side of my uterus and the tube.
I’d had a metal clamp left inside me for the last four years! I ended up popping a stitch in the bellybutton incision and it got infected. I was admitted to hospital again overnight with IV antibiotics. Having this (minor) infection put me in my own air conditioned room, nurses at my beck and call, even getting me cups of tea. A few months prior, I had been at the SAME hospital, on the ground in pain not being able to eat, drink or swallow, bleeding from the bowel and was told it was anxiety and to go home.
In early May I saw the gastroenterologist in Sydney as the IBD flared up again. While I was in Sydney, all my finger joints became sore, my ankles were swollen, and I couldn’t walk well. It remained for weeks so I decided to go to the GP on 3rd June 2022. I was admitted to hospital overnight and had an MRI. The result showed pockets of fluid (effusions), in all my joints. In the last few weeks, following a bone scan, I’ve been told I have inflammatory psoriatic arthritis.
I have mild arthritis in both knees, ‘changes’ in my elbows and synovitis in my wrist. They were looking at a chemotherapeutic tablet to treat the joint inflammation and I’m being tested for autoimmune disorders. My new doctor recognised that I have autoimmune symptoms. She does too and has also experienced medical gaslighting. I feel super blessed with some specialists and doctors I’ve come across.
I had an interview for a new job yesterday, which looked promising. I was then told the role requires the booster. The previous job I got but could never start last year also required the booster.