Before taking the vaccine Ingi Doyle was a competitive triathlete. This is Ingi’s story:
“14 days after my second jab all hell broke lose, this is my story:
Covered up with long sleeved, loose clothing. My skin-on-bone body does not feel real in my head. But every so often, I catch an unwanted glimpse of myself in the mirror and cry. Loosing 12-14 kg of myself suddenly, is not pretty.
After a lovely ski holiday in July, I was waiting for my luggage to arrive, when I suddenly felt a sharp pain in my lower abdomen and lower back. During the hour-long drive home, it got a lot worse. Being Sunday evening, I thought I’ll sleep it off till the morning. However, it was getting bad near midnight, so off to emergency we went. By now, we both thought I must have appendicitis… oh, how I wish it was!
This was during COVID lockdown, so Scott was not allowed to come in with me. I was quickly attended to and assessed. Sent off for a scan, then to be greeted by a team of foreign faces of doctors who introduced themselves and in the next breath told me I had a dissected Aorta. At this moment, I started to feel very scared. I did not in my state of pain, understand fully what they were trying to explain to me. I asked if Scott could please join me, but I was denied anyone to come to support me. I vaguely remember calling him and trying to explain the situation, but I did a bad job, and he was starting to freak out. A dissected Aorta sound to me like a death sentence. I was again sent off for a different scan, so they could pick up more details. It was confirmed, a dissected Aorta from below the renal arteries, down to the iliac branch. The one thing I remember most was that I was told, I was not going home anytime soon. Before daylight hours, I had various medical teams popping in, talking what felt like a foreign language to me. It was all a blur.
Later that morning, I was sent to a ward. Little did I know that this was now, going to be my place of residence, for most of the next 2 months. During my first 24 hours, I think I had every scan and blood test possible, under the sun. I was in and out of my room like a yoyo. They were looking for a cause and signs of disease. The urgency of it all compounding my anxiety. Compounded further by still being unable to have any visitor support. This was a scary time, as the seriousness of what had struck me, set in. I was started on BP, Stroke, cholesterol, blood thinning, painkillers, and nausea medications. I had within 48 hours seen so many different medical teams, I had lost count of who was who. I learnt that there was no obvious reason why this had happened to me, and I had them all puzzled how someone at my age, so fit and healthy, living a fitness and health-based lifestyle, would be struck by this. I also learnt that they found a condition called FMD (Fibro Muscular Dysplasia), in my posterior neck arteries. This is a condition I had never heard of but apparently it is likely I have had it all my life. They found a small dissection on my left side, but I was told it was unrelated as it looked all healed over and old. Of course, they looked high and low for other signs of FMD in all the common places but found none.
One night before lockdown ended, I broke down and cried. The lovely nurse who was looking after me, organised an exemption for Scott to visit that evening. Finally, I felt I had my team with me. Someone to help absorb the incoming information, and to pass it on to my family and friends on the outside. Someone who loves me and asked all the questions I could not think of. Over the weekend, I had my amazing children visiting me as well, as lockdown was over. After an additional few nights on the ward, I was sent home to manage my new condition with medication as well as strict instructions not to elevate my HR or BP. Was this my new life now?
Two weeks at home adjusting to a very slow way of living. The thoughts running through my head were “only until follow up scan”, “it’s not forever”, “I will be back doing the things I love”. I was staying as positive as I possibly could. Vey short walks each day kept me sane. I felt positive walking to the hospital for my follow up scan. However, once back home, I got a phone call asking me to come straight back to emergency …. I was devastated…
This time I was send to ICU. Again, the various teams of doctors where rotating fast, explaining that I had a hematoma developed above my dissection, getting very close to the renal arteries. Not a good result. They were getting ready for surgery. I was about to get a new piece of Aorta with new arteries to kidneys. A massive graft. This was on a Wednesday afternoon. I spent the weekend there, being closely monitored. Monday, it was show time!! For me, Monday was non-existent. Not for my poor family. They endured 12 hours of waiting before hearing any news. It was a huge surgery, that left me with a nasty scar and a pressure sore on my backside. After the 12 hours, I was kept asleep for another 6 or so hours. I had been warned about waking with a breathing tube but was told I wouldn’t remember it. They were wrong! I woke hearing voices; I felt the tube but was able to breath myself with it. It seemed to be forever when they were pulling at it, while I was awake trying to breath around it. It was a horrible experience. After seemingly an eternity, they finally started to get it out. I remember gagging and coughing, and after that I don’t remember much. The next week can only be described as a living hell. I have vivid memories of being in ICU. Feeling sick all the time. Not eating, as I was hooked to tubes of food. My Kidneys, bowel and liver had stopped working as during surgery as the blood supply was cut for some time. The risk of living without kidney function and/or bowel function forever was an ever-present terrifying reality. The heavy drugs I was given made me hallucinate badly. I was hearing voices, seeing things, thoughts of conspiracy against me, freaking out at nights. I lost time and days. One experience has stuck with me. This was when they were putting in an epidural for pain relief. I had a moment of clarity before they began, as I was on this constantly moving air bed. It was set to move to reduce pressure sores. I recall shouting out to the nurse to switch the bed off. The last thing I wanted during this delicate procedure around my spinal cord, was the bed to start moving. The procedure took a very long time. I was in a lot of pain and the little tube, got stuck and wouldn’t go in properly. They had about 6 inches to feed into my spine I was told. I remember shaking badly and was continuously told to stay still. Then, in the middle of it all, the bed started to move! I have always been very appreciative and respectful to all staff who has cared for me, and I would never dream of being rude. But I lost it! I am not proud of it, but I swore and cursed at the person trying to help me. I guess pain and anxiety got to me.
Every day my beautiful children and Scott were by my side as much as they were allowed to be. Those moments were the highlights! I also had some incredible nurses caring for me around the clock. There were many moments when I thought, I was not going to make it through this. Several times I just felt like I just couldn’t go on and asking the doctors if I was going to die was commonplace in my new hell. I was being rolled from side to side to stay off my pressure sore. I was being washed in the bed. I was fed by a tube. All dignity gone. My kidneys were hooked up to dialysis. I was trying different drugs for pain to get away from hallucinations. At the end of my ICU stay I was allowed to drink and eat liquids. This proved to be a real struggle. My stomach would not accept much. I spend a lot of time bringing back up what I worked so hard at getting down. I also had the misfortune of experiencing two vasovagal attacks, fainting, and leaving me unconscious for a short while. After successfully getting on the walking frame with the physios and moving slowly up the corridor it was decided I was ready to go to a ward. Goodbye ICU, 2 weeks there, was plenty enough!
The surgery had been a success. My failing kidneys were nursed back slowly with regular dialysis. My liver function improved. Continuous blood tests and reassuring scans over the next week made me feel positive. Flowers and visitors cheered me up. I was allowed to eat anything now, but this was my main struggle. I just couldn’t eat or drink much at all. My weight had now started to plummet, and I was feeling weak rather than sore. The nutritionist team, that is still supporting me, kept a close eye on me. Short walks up and down the corridor, plus trying to get as much food into me as possible, became my daily routine. The one thing I couldn’t shake was the constant nausea and an oversized belly. My abdomen was huge, pushed out like a tight drum skin ready to pop. I looked like I was 9 months pregnant. The renal team kept trying to get fluid off me, but all it did at the end was dehydrate me without moving the fluid off my belly. 14 litres had been removed from me, but my belly persisted and wouldn’t budge. After 8 nights, I was deemed well enough to go home. I still couldn’t eat very much, and the constant nausea was still there. Also, a crippling neck pain had developed after they removed the final central line coming out of my neck. It was replaced with a Permacath, that was put in for dialysis use only.
Once home, I had to continue dialysis as an outpatient. 3 times over the next week, 5 hrs each visit. At my first follow up, my neck was really playing up. I had the doctors concerned. So much that I was called into to emergency that same night for an emergency scan. This was a rather scary experience. Imagine a VIP getting the royal treatment. But the treatment is a rushed entry to ED. My arrival was expected, I did not have to wait even for one minute. All my details were on their screens ready to go. Within minutes, I was hooked up to machines, blood taken and rushed into the CT scan. As my kidneys were only just starting back, I had to sign a special permission slip to be able to have the dye. They weighed up the risks and benefits and deemed it worthwhile. This gave us both a big fright, as the last thing we could cope with right now, was another setback. In true VIP style, the results were interpreted very quickly, and I was declared safe and stable. No further issues at all! I think both Scott and I had held our breaths throughout that whole ordeal.
Over the next few days at home, my belly did not get any smaller, and the renal team was getting more and more concerned. The great part was that my kidneys had kicked in more and more and the decision to stop the dialysis for a week as a trial, was made. Try for a moment and understand the anxiety of waiting for weeks to see if you’re going to spend the rest of your life living on dialysis. What a relief. After only a few days off dialysis, a young doctor decided to investigate my belly further. More scans and x rays. I was off to see the liver specialist next. It was decided that my belly was full of fluid caused by a leak from my lymphatic system. I was called back into hospital for another vacation…. This time, they put a drain in my waistline, guided by ultrasound. After six hours, 3 full bags of Chyle, had poured out of me. 6 litres, just from my belly. I can’t describe how amazing it felt to lose all that pressure on my organs, ribcage, and spine. I felt like I was melting away. I learnt that Chyle is made in the lymphatic system every time you eat fat, and its purpose is to move the fat away. As it turns out, my lymphatic system was damaged during surgery, and a small leak had caused my belly to fill up. Each time I ate something with fat in it, it would leak into my belly. The best cure for this, is to be on a no-fat-diet, to allow the leak to heal naturally. I was again getting advice from the nutritionists. By now, my weight was 53-54 kg. I had lost so much weight. A no-fat-diet just seemed absurd as I already looked and felt completely anorexic. After 4 more nights on the ward, I was again sent home with strict diet instructions and follow up appointments booked. Ha, sticking to this diet was incredibly difficult. The good part here was that my nausea finally subsided. The neck pain still made my head fuzzy and kept me up at night.
The following week I had a follow up appointment with the liver specialist. It was decided I start reintroducing fats in my diet, while keeping a close eye on my belly. This is where I am now, as I write this. It all seems ok. I feel like I have turned a corner and finally have a little more energy. I have started to do some short walks around our lake. I have even been out of the house for a couple of short trips. I still have a very long way to go. Each day, as the day progresses, I get tired, and my stomach is bloated and unsettled. It kind of resets itself each night, as I feel better when I wake up. I do wake up a few times each night. Sometimes all sweaty, sometimes just restless. As my haemoglobin is low, I need to inject myself once a week to boost it. This is a job for Scott, as there is no way I could do that myself. It is only for a few weeks, until things go back to normal.
Overall, I am progressing in the right direction. We are hoping for smooth sailing from here. Eight weeks after surgery this week. I do have some follow ups coming up within the next two weeks and I am having ongoing treatments for my neck, which is improving each time. My now, very thin body is all about getting more energy onboard so I can start rebuilding. Today, as I walked around the lake, I listened to my running music. It was emotional and uplifting at the same time. As I glance at my shadow and see this stick like silhouette, I tear up. But I am determined, no matter how long it takes, to get back to being me.”