near death.

In March 2019 I began to have some weird things happen to my body. My muscles began to cramp during the night. Not normal stiffening cramps but rolling pain. It would wake me while I was sleeping and continue during the day. I had blood tests done and the only concerning deficiency was for B12. I began B12 injections which seemed to alleviate some of the pain but not all.

By May 2019 my body was still struggling with the muscle cramps and I seemed to be getting weaker. I also started to have random bouts of diarrhea. A stomach bug had gone through our house and I thought I was just finding it harder to shake. A few years prior (October 2017) I had seven weeks of diarrhea which set off the Myasthenia Gravis (MG) putting me in hospital. With the symptoms being similar, I contacted Matt who arranged for IVIG (white blood transfusion) which historically had improved the MG.

Two weeks on from the IVIG (20th May) I was admitted to Rotorua Hospital. The MG had continued to deteriorate, and I was having trouble holding up my head. I was in the toilet every night for at least two hours and for about four hours during the day with uncontrollable diarrhea. My face was drooping, and my eyes were red and swollen. I had to sleep sitting up and my breathing was strained. This hospital stay was particularly difficult as I received some resistance when I told the doctors I was on keto. I had to see a dietitian as keto was viewed as a fad-diet for weight loss as opposed to a solution for health and I’m pretty sure everyone thought I had an eating disorder. I had a double dose of IVIG and was discharged from Rotorua Hospital on the 24th May, unable to walk unassisted.

On Monday 27th May I collapsed at home with uncontrollable bowels. An ambulance took me to Waikato Hospital and as Matt was overseas, he had given his colleagues details about my treatment. They were amazing in Waikato Hospital. So careful and detailed. I had tried a few drugs at this stage to try and control the diarrhea (codeine and loperamide) but these were inconsistent in symptom control and didn’t fix the cause. It was arranged for me to begin Plasma Exchange (PLEX), where my blood was drawn out, plasma separated and then replaced, before being mixed into the blood and put back in my body. PLEX was serious, and there were high expectations that it would work in stopping the MG deterioration. Unfortunately, it didn’t work and on Tuesday 11th June I was sent to ICU with breathing difficulties. Once in ICU, I was injected with pyrostigmine and I immediately began to breathe easier. I had crazy stomach pains and the diarrhea persisted, but I was able to leave ICU.

We learnt that the pyrostigmine helped control the MG, but I needed the pills every three hours.

With the MG stabilized, I was discharged from Waikato Hospital Wednesday 19th June. I still had diarrhea and had dropped 10kg from early May (42kg). I also had a CT scan in June confirming the tumour had not grown, so therefore was not setting off the MG.

The following two and half weeks I was at home, being cared for by Vernon. As we had been discharged twice from hospital we were just learning to cope, hoping that things would improve. They got worse though. The diarrhea continued and was uncontrollable. Most mornings I was in the toilet from 5am – sometimes throwing up from the pain. The MG almost crippled me, I couldn’t swallow properly, hold my head up, walk or sit up unaided. I was still taking the pyrostigmine every three hours but what we didn’t realise is that I was not swallowing the pills or water properly and was aspirating (the water was going in my lungs).

On Monday 8th July Matt arranged for me to go into Waikato Hospital again. Unable to swallow I had a gastric tube inserted on the 10th so I could take food and medication. On the 11th July I had breathing failure and was incubated in ICU. I remained in ICU until Sunday 28th July. The first week was touch and go – I was heavily sedated and the doctors didn’t know if I would pull through. My organs were being assisted by machines, I had pneumonia, and went into heart failure. The MG had completely weakened my body and I was unable to move – except for my hand. It was the strangest thing. I couldn’t move or breathe on my own – yet I could write. Twice the ICU doctors attempted to excubate but both times I wasn’t strong enough and had to have the breathing tubes put in again. The diarrhea persisted and I knew it would kill me if we didn’t treat this first. I had a flexoidoscopy and endoscopy but there was no infection in the bowels or intestines. Thankfully, Matt, my oncologist Dr Kennedy, the gastro department, dietitians and ICU doctors had a meeting to find a solution. Dr Kennedy suggested an oncology drug (octreotribe) and I was also put on prednisone. The diarrhea improved and I began to grow stronger and hold onto the nutrients from the feed. I am guessing I went to 37kg while I was in ICU. I lost about 70% of my muscle mass and by the time the physio department came to see me it was a huge accomplishment to sit up in bed unassisted for 6 seconds.

We were preparing for a third excubation when the ICU doctors visited and prepared us for the worst. They didn’t think I would be able to pull through another attempt and wanted us to know they had put on a ‘DNR’ (do not resuscitate) on me. Vernon immediately called Matt and they were able to attend the ICU weekly meeting to advocate my case. The ICU doctors agreed to save me should the third excubation fail, but thankfully, we didn’t need them to. It was a success and I was able to breathe on my own.

Moving out of ICU I spent a few days in HDU before I moved to a ward. In the ward my body slowly grew stronger and the basic functions started to return as I began rehabilitation and physiotherapy: talking, coughing, swallowing, eating, walking, washing.

The medication I was on at this stage was octreotide and prednisone (for the diarrhoea), and pyrostigmine for the MG was down to 3x a day. On Thursday 8th August I had the gastro tube removed and on the 12th August I was discharged from hospital, walking out stronger than I had been in months.

At home, the following week, I started to deteriorate again with the MG. I was coming off the prednisone quite quickly and we didn’t realise this was also helping the disease. We weren’t taking any chances and called Matt immediately who admitted me again on Tuesday 20th August. In hospital I had high doses of prednisone and when stable, was discharged for the last time (Friday 6th September). The plan was to continue on the prednisone and tapering down slowly and staying at 10mg a day. I would continue on IVIG, pushing that out as much as possible (8-12 weekly), and no longer needed the octreotide.

Late September 2019 I started to feel a slight rasping in my chest and it was reminiscent of when I had pneumonia. Being super cautious, I went to the doctor to request a chest x-ray and had the x-ray done on the 2nd October. The radiologist sent the x-ray to my oncologist who contacted me with the most amazing news. Sometime since the last x-ray (June 2019), the tumour had disappeared by at least 95%! This was confirmed in a CT scan the following month.

There are a few thoughts around how this could have been possible. I just know that we did all we could in the natural, and God stepped in at the end. In the few years since I have had a bit of growth, but we continue to re-group and walk by faith, waiting for the day it will be all gone (Gods promise fulfilled). And fasting and keto remains the only therapy I am doing.