On Thursday 27th of May 2021 at 2:35pm, my husband emailed to say, “Been a bit off colour this morning. Headache, body itching, sneezing and general lethargy. Had to lie down. Had some chest pains as well. Bit better now. Just had some lunch. Done f*** all today…feel a bit useless. Will head off around 4pm for injection in shoulder.”
When I arrived home that afternoon, Craig told me that he went to see his GP of many years for the cortisone injection in his shoulder for bursitis. Craig stated that the doctor said he was too unwell and to postpone until Tuesday, the 1st of June. Craig had dinner that night and sat at the table with us and we then went into the bedroom to watch Netflix. He said he still had a bit of a headache and he took 100mg SR Tramadol to help him sleep with the shoulder pain. We settled off to sleep around 10.15pm.
Around 2am Friday morning, 28th of May, I woke to find Craig was not in bed. I went looking for him and found him lying on the lounge in his dressing gown and a blanket wrapped around his shoulders and neck, and another blanket over his lower legs and feet. When I asked what the matter was, he said he couldn’t get comfortable and his neck, shoulders and back were sore. I helped him back to bed and he seemed to settle down and we both fell asleep.
I got up at 5.45am and left for work around 7:05am. Craig was awake and said he still had a bit of a headache but would take it easy that day. At 11.01am Friday 28th of May, Craig emailed me to say, “Hi baby, Can you ask the Dr there about my condition and whether I need to go to ED? Symptoms: Headache, cold feeling all over my body, numbness, no taste buds functional, dizziness, itchiness – has eased.” I emailed back with, “Where is the numbness?” Craig replied, “All over my extremities…feet, hands, face”. I replied, “So, you can’t feel them at all? Or does it come and go?” Craig replied, “Constant”. I spoke to another doctor who was also a colleague. She said he should definitely see a doctor but if the headache worsened, then go to ED. I emailed Craig and said, “My colleague said you should see a doctor if the headache persists. She doesn’t think you should go to ED unless the headache gets really bad. There are a few doctors down at Coolo that may be able to see you?“ Craig replied, “Ok thanks darling love you”. I replied, “I can get you an appt at Waramanga practice at 3:15pm?” I then called Craig at 11.24am to speak with him as I was getting worried.
I repeated about seeing a doctor at 3.15pm and he said he didn’t really have the energy to go and see someone. He said he would lie down for a while and see how he felt. I told him there were aspirins in the cupboard that might help his headache. At 3:50pm, I received an email from Craig saying, “Honey. I need to go to hospital… Symptoms are not getting any better. I am now nauseous, very dizzy and have lost sense of smell as well. Coldness all over my body and headache persists. Need to get a brain CT me thinks. Can you take me in?” I replied at 3:51pm with, “Yep I will come home now sweetie”. I arrived home around 4:25pm.
Craig was walking out the door when I pulled into our driveway. I drove straight to the hospital Emergency Department, dropping Craig at ED and then parked the car. When I entered ED, Craig was sitting down with a nurse whilst she was questioning his symptoms. The nurse called someone on the phone and said she had a Cat 2 patient and requested Craig go straight into acute. The nurse got a wheelchair and pushed Craig to the acute ward. Once in the acute ward, a doctor started questioning Craig and his symptoms.
Craig’s headache by this stage was worsening and he requested I cover his eyes as the light was hurting his eyes and intensifying the headache. He was asked to change into a gown which I helped him do. A nurse came in whilst we were speaking to the doctor. Craig explained all of his symptoms and informed the doctor he began feeling unwell from Thursday 27th of May. I informed the nurse that Craig had taken two tablets of 500mg of aspirin.
Craig also mentioned that he had been extremely itchy on Thursday 27th of May. He’d taken a Phenergan which helped alleviate the itchiness. At no point was it mentioned he had developed a rash. The nurse then tried to insert a cannula into one of Craig’s veins but because he was very dehydrated, this proved to be quite a difficult.
Due to the severity of Craig’s headache, the doctor ordered a CT scan with contrast. Due to the contrast being required, a good vein was needed to administer the contrast. After 5 attempts, the nurse finally put a cannula into place. Blood was taken from Craig for testing. A stroke nurse then attended to see Craig and performed her examination. She did say to me that they weren’t sure if it was a stroke, but it had been requested she perform the examination.
Craig’s daughter, Ashleigh had arrived at the hospital by this stage as I had texted her at 6.00pm to let her know her father was in ED. She went with Craig for the CT scan. I had constantly been giving Craig small sips of water but he was not at all hungry. I had also started to wipe Craig’s forehead with a damp paper towel as he said he felt very hot internally. He was also afebrile at all times over the next few days.
An ECG was not performed and I was also informed an MRI should be done, but due to the long weekend, an MRI could not be done until Tuesday. Craig’s blood pressure was 167/109 and other blood pressure readings over the evening were consistently high. Craig has never had hypertension issues and whenever he saw his GP, his blood pressure was very normal and always around 120/80.
Around 7.30pm, I ducked home to have something to eat. Ashleigh texted me at 8.01pm and asked me to bring in a face washer as that would be more comfortable than using wet paper towels to cool Craig’s forehead. Ashleigh had also mentioned to the doctor that Craig had his AstraZeneca on 18th of May. I returned to the hospital not long after that. I am not sure of the time, but Craig was given 5mg of Endone. I requested another 5mg sometime as his headache had still not settled. We were also informed the CT did not show anything so there was no firm diagnoses for his illness at that stage.
Craig’s headache had still not improved and he was also hooked up to a saline drip to help with his dehydration. The doctor then ordered 12.5mg of largactil to be added to his drip. He was given another 12.5mg Largactil at some stage. I also believe that paracetamol was given.
Craig was transferred to the Emergency Medical Unit (EMU). He slept for a little while and I texted to tell Ashleigh at 10.37pm. I also stated the doctor was supposed to come in to see him. Craig didn’t sleep for long and he asked me to help him to the toilet but he had difficulty passing urine. I also requested a urinal pot for him so he didn’t have to keep getting out of bed as he was unsteady on his feet. I had asked the nurse if he could have more Endone as Craig was now complaining of general soreness in his back and neck. He was quite fidgety and unsettled. I was massaging his lower back for him and he also told me that his right calf muscle was sore. I also massaged that for him as well. I ended up leaving the hospital around midnight as I was extremely tired. When I left, the doctor still had not been to see him and I was assured more pain relief could be given around 1.00am. At 9.44am on Saturday 29th of May, Craig texted me and said “Hi babe. Can you come and pick me up from ward??” Craig had been given a ‘Heart bug’ to monitor his heart rate.
I had not been informed of anything to do with his heart and Craig had not had any heart problems before. We were also given information on TIA (Transient ischemic Attack) and again I was not informed by anyone this was the diagnosis. Everything seemed to be maybe this, and maybe that. Craig was told to take 100mg of aspirin daily starting from Monday 31st of May. The delay in starting the aspirin was due to him taking the 1000mg the previous day.
Craig was advised not to drive for 2 weeks as well. Craig still had a headache and both Ashleigh and I were concerned that he was being discharged when there was no official diagnosis. Craig only had a very small amount of food for breakfast at the hospital and was still quite weak. Ashleigh requested a wheelchair to transport Craig to the car, but a nurse said he didn’t need one and that he was fine. I found a wheelchair and transported Craig to my car with Ashleigh’s assistance. On the discharge summary given to me, it incorrectly said “63 yr. old gentleman”. Craig was 65. It also stated “Saw GP 1/7 ago for headache and rash that he developed – Took Phenergan (Rash resolved).” This was also incorrect. He didn’t develop a rash and had only experienced itchiness – there was no rash to be resolved! It also stated “Took 2 grams of Aspirin this morning for pain” which was incorrect as he’d taken 1000mg!
Once home, Craig went straight to bed. It was quite a chilly day but Craig wanted the door in our bedroom open slightly so he could have cool air on him. Again, he was not afebrile but kept saying he felt hot internally. He stated he felt like he was burning up inside. I tried to keep his water intake up but he seemed to be getting weaker, his headache intensifying and he was extremely lethargic. I gave him an electrolyte icy pole hoping it’d help him. The pain in his back and neck was still there and he was again, extremely fidgety and uncomfortable.
I believed my husband was getting worse and I was getting very concerned about his health so I called for an ambulance at 3:33pm. The ambulance arrived in maybe around 30 minutes. I explained Craig’s headache was worsening again, he was weaker and his whole body was shivering and that I was very concerned about his whole demeanour. I actually felt like Craig was being treated as a drug seeker. The other attending paramedic read the discharge summary and they kept reiterating to us that it “was just a bad headache or migraine”.
Craig has had migraines previously, but has never been on medication for them. The number of migraines Craig had in previous years was maybe 3 – 4. Previous migraines for Craig were not enough to be a major concern, which made the current bad headache/migraine even more concerning. As clearly stated on the discharge summary, “re-present if: -ongoing headache – weakness of limbs, facial droops, numbness / paraesthesia – fevers or feel unwell”.
I was told they could take him to ED but he would “probably just get more painkillers and be sent home again” and that he should just wait for the MRI in the next week or so, and see his doctor for something to relieve his migraines. I felt Craig was being brushed off and his symptoms weren’t taken seriously. I was also told I could take him to an after hours doctor such as CALMS. I ended up making an appointment that evening at 8.00pm to see a doctor at CALMS who were based at the *** Hospital. Upon arrival at the hospital, I retrieved a wheelchair to use, as Craig was still very weak. We weren’t waiting long before a female doctor asked for us to go in. I explained everything to her and she started doing examinations on his strength.
Craig was in a lot of pain! His headache was still very bad with pronounced light sensitivity, and his whole body was aching and sore. Craig’s blood pressure was again quite high. The doctor shone a light into his eyes and I could instantly tell that something was not right. Craig’s pupils were dilated (I would say at least 6 – 7mm) and they were not reacting at all to the light. The light also intensified his headache again. At one stage, Craig slumped forward onto me and the doctor said, “I know you’re not well but you don’t have to carry on like that”. I believe Craig was beyond exasperated and feeling so unwell he just wanted to be out of pain.
The doctor then listened to Craig’s chest and again, and I could tell something wasn’t right by the way she kept listening to his chest. She then said, “I can hear crackling on his chest which could maybe suggest pneumonia”. Craig asked for something for the pain and she wrote out a prescription for 20 x 5mg Endone. She wrote a referral letter and I took Craig straight back to ED. We weren’t waiting long and we again ended up in the acute ward in ED. I noticed that Craig’s breathing was now laboured and he was still extremely fidgety and agitated. He couldn’t get comfortable due to the pain in his whole body, especially his back.
We were waiting quite a while before he was seen by the doctor at around 11.15pm. I had ducked back home for around half an hour to get something to eat as well. The doctor performed all the strength tests, and she also could hear the crackling on his chest. I think they gave him some Panadeine forte for his pain. I ended up leaving after midnight and Craig did seem to be a little more settled so I’d hoped this meant the pain meds had kicked in a little. There were still no definitive answers or diagnosis.
Ashleigh texted me on Sunday 30th of May at 8:41am saying Craig had been moved to ward 6a. She also said he wasn’t in great shape. Not long after, Ashleigh texted again to say Craig had been moved to the stroke unit on Ward 7a.
When I arrived, Craig had deteriorated. He was physically and visibly weaker. He had not eaten and he was in a lot of pain and his speech was starting to slur. His right eye was droopy and had started to go red. I had brought in fresh clothes for him but unfortunately as I helped him get changed, Craig became incontinent and he became quite distressed when he realised what was happening.
I asked Ashleigh to ask the nurse for some incontinence pants and I helped Craig put them on. I went and spoke to a nurse and requested that he be given a bed bath as he had not showered or bathed since Friday (it was now Sunday). A nurse came in and gave him a bath and I helped to put a clean t-shirt on him. The doctor came and spoke with us. He was unable to shed any light on what was happening to Craig and stated that he needed an MRI. As it was the long weekend though, the MRI would not be performed until Tuesday 1st of June. I requested pain relief as it was clear Craig was in a lot of pain. We were told they didn’t want to give Craig opiates as they didn’t want him to become addicted.
The doctor was willing to prescribe some paracetamol. Unfortunately, I do not recall a lot of the conversation. Most of the conversation was about neurological issues and they still didn’t know what was happening to Craig. Everything was reliant on the MRI. I do however clearly recall asking the doctor to speak to Craig’s brothers. Both of Craig’s brothers are doctors. Craig also verbally gave permission for the doctor to speak to his brothers. The doctor stated “he would get to that later”.
I spent most of the day with Craig. He was in constant pain and I gave him as many sips of water as I could. He was extremely fidgety and could not stay still for more than a few minutes. As he was getting weaker, it became harder to move him around. He was in bed and then wanted to move to a chair. Then he would want to go back to the bed. It was extremely exhausting for myself but unimaginable for Craig. He just couldn’t settle.
He had not slept and he couldn’t rest due to his pain. At one stage, I was trying to get him up off the bed and I cried out for help as I just couldn’t get him up. A man from next door came in to help me. I will never ever forget the absolute helpless look in Craig’s eyes. He was deteriorating before my eyes. I was changing his incontinence pants every hour or so. Ashleigh came back later in the afternoon and I went home for an hour and returned to the hospital after that. Craig was still in a lot of pain and still extremely fidgety. I did manage to get him to stand and he said he wanted to try and walk a little. We managed to walk up and down the corridor so maybe 20 metres all up. He was shuffling like an extremely old man. When we got back to his bed, he looked at me and said that he was in so much pain that he just wanted to die. This completely wrecked me and we were both crying.
At no stage did it cross my mind that he wouldn’t come home. I truly believed that once the MRI was done, we’d have the answers and he’d be better. I’m unsure what time I left the hospital that evening.
On Monday 31st of May, Ashleigh texted me at 8:52am and said “Hi Cathy, please come in, he’s deteriorating rapidly he now can’t use his legs or talk”.
When I arrived, Craig’s speech was extremely slurred, and he could now not swallow! I was wetting his mouth with a large cotton tip but he couldn’t even swallow the water and it’d dribble out of his mouth. His right eye in particular was redder and was drooping even more. He was still in pain and he said he’d not slept. I kept asking the nurses for pain relief and I know that Craig’s brothers were also still calling trying to get some answers. The doctor came in and told us that we still don’t know what was happening with Craig and the MRI was still needed and would hopefully provide some answers. He also mentioned getting a lumbar puncture, but again, the MRI should be done first. The doctor then stated that one possibility with Craig was Guillain Barre Syndrome (GBS). He wanted to try a blood transfusion of immunoglobulin which would cause no harm if it wasn’t GBS, but would be worth a try.
Ashleigh and I agreed for this to happen. It was explained that in extremely rare cases it could cause a blood clot. I again asked about pain relief and again the doctor did not want to administer opiates as he did not want Craig to become addicted. This statement was so damn irritating. My husband was being treated as a drug user and they were more worried he may get an addiction instead of treating the acute severe pain he was in. Getting my husband out of pain should have been the priority! I believe the doctor prescribed a medication called Gabapentin. It took three hours for this to be administered to Craig. Three hours!
I again was changing his incontinence pants frequently and as Craig was still hooked up to the heart monitors, BP cuff etc, moving and changing his pants and trying to get him comfortable was becoming extremely difficult. Craig’s blood pressure was still high, his oxygen saturation levels were in the low 80’s when he took out the oxygen nasal tubes. When the oxygen nasal tubes were back in, his saturation levels would go back up to the low 90’s. Craig was so fed up with tubes and wires going everywhere and being in so much pain. He asked me why he wasn’t in the ICU.
I couldn’t answer him as I had no idea why he wasn’t. He kept saying to me, “Something is seriously wrong with me, why isn’t anything being done?”. Again, I had no answers. We were completely relying on the medical staff to help Craig. As Craig had not eaten since Saturday morning, I spoke to the nurses in relation to this. They decided to put in a nasal gastric tube so they could give him some sustenance. I went with Craig to get a chest X-ray which was to make sure the tube was correctly placed. So, along with all the other stuff he was hooked up to, he now had this in place.
Possibly later in the afternoon, a nurse came and told me Craig was being taken off obs and being moved to the ward. I cannot comprehend why, with Craig so unwell, that he was taken off obs!? The ‘ward’ was the other side of the stroke unit.
Here was my husband, constant bad headache, pain in all areas of the body, unable to walk, unable to move around freely, constant high blood pressure, unable to breathe properly and on oxygen, incontinent, pupils dilated and not reacting to light, unable to swallow, numbness in all extremities, very red and droopy eyes and he was taken off obs. How was this decided? Who made this call? One of the nurses actually stated that his blood pressure and oxygen saturation levels ‘weren’t bad for the stroke unit.’ What?!
Craig was moved to the ward. He was still hooked up to oxygen and had the nasal gastric tube in. He was still in pain, fidgeting constantly and unable to get comfortable. In and out of bed, in and out of the chair. I ended up going home for a little while as I was overwhelmed with what was happening or more to the point, what was not happening!!
Ashleigh stayed with Craig while I went home for a little while. When I went back in, Ashleigh had texted me to say that the nurses had managed to settle him a little with a warm pack on his back and some pain relief. When I returned to the hospital, Craig was again very restless. As soon as I arrived, he asked me to help him into the chair. I did this for him with the assistance of one of the nurses. Craig’s eyes looked so red and they were very droopy.
It still did not cross my mind for one second that he would not be coming home to me. I thought that he would have the MRI first thing in the morning and that’d tell us what was happening to him. I sat with him until visiting time was over. I was standing in front of him, hugging him, with his head against my chest. He said to me, I love you, and I still remember how slurred his speech was even then. I said “I love you more, don’t go anywhere and I will see you in the morning”. At 11.11pm, that evening, I received a call from a doctor. I answered with “Hello, Cathy speaking and she asked “Is that Catherine, Craig’s wife?”. I said, “Yes, it is”. She then said to me, “I have some very bad news for you. Craig has had a medical episode and it looks like he won’t make it.”
I drove straight to the hospital and my daughters followed in a separate car and they called Ashleigh. When I got to the ward, a nurse I knew approached me. I could see Craig behind her and I said to her, “Is he gone?” and she said, “Yes, I’m so sorry”. I went straight in and I was told that I couldn’t touch anything that was in place as he had to go to the coroner as he was. Ashleigh arrived a few moments later. The doctor took me into a room to explain what had happened to Craig.
I do not recall much of this conversation unfortunately. Apparently he had arrested whilst alone and when one of the nurses went to check on him, they discovered he wasn’t breathing and CPR was commenced. They did everything possible to save him. We were eventually moved to another room where we could be alone with him. I was told the police would be attending and they would need to interview me. I spent a couple of hours going through everything with them and I left the hospital sometime after 4am. The police told me the coroner would be performing a post mortem on Friday 4th June. I begged them not to do it that day as it was Craig’s birthday. They said they would do everything they could to grant my request. It was then performed on Tuesday 8th June. On Wednesday 22nd December 2021, I received a message from the coroner’s office stating the cause of death for Craig was from “Guillain Barre Syndrome following the AstraZeneca vaccine”.