Journey through the unknown Part 1
I'm not a blogger or a writer, however I thought I would share my story hoping that it may help someone.
We live in such a busy world that sometimes we forget to stop, take a breath and just be.
I've had health issues since I turned 40, I was a healthy person with only the odd cold until then. It started off with minor health issues and gradually increased over time. What changed, you may ask? It was also a time when my first marriage fell apart and I decided to move to another state to start again.
It started with gastrointestinal changes and infections that needed lots of antibiotics, this I believe compounded the issues. They were manageable at first but little did I know that this was the beginning of worse that was to come.
In 2014 I started studying to be a Naturopath, I wanted to be kind to my body and stop using conventional medicine where possible. There had to be a more natural way to help your body heal. There was, something I had never known about: Naturopathy.is natures way to heal the body, plants that give us life through their healing powers, natural substances and therapeutic compositions.
Towards the end of 2014 and into 2015, I was having some severe bouts of GIT issues. They came and went and I put it down to a bug.
In March 2015, after a gastroscopy and colonoscopy I was diagnosed with an Inflammatory Bowel Disease, Collagenous Colitis, a parasite and lactose intolerance. The collagenous colitis is a rare type that my Dr hadn't seen in her 20 years of practice. So my question was, how do we treat this? Her response was drugs, of course, to treat the parasite and to control the diarrhoea, however one thing she did say to me was 'you just have to live with this'.
Wow, that blew me away, I was running to the toilet up to 20 times a day, how can anyone live like this? This is no life.
I was desperate for anything that was going to help me and my amazing husband, Steve, was determined to find an answer. Through our business he happened to talk to a customer and she mentioned a Rife machine and thought it may help me. Neither of us had ever heard of this before so Steve put his head down and did some research. (If you are interested in the Rife machine, do a google search and have a read and make your own decision). We thought, what have we got to lose, so he bought a machine and off we went. Ten days after using the machine my symptoms were 80% improved and I started to have hope that life was worth living again!
Six months later at the age of 45 I was diagnosed with cataracts in both eyes! No one could give me a reason why this happened so early, another rare condition. This is an older persons condition. Surgery was booked and I had both lenses replaced.
After moving interstate at the end of 2015 we settled into life in Melbourne. Studying was keeping me busy, along with adjusting to a new city, with no support and no friends. You climb on the wheel of life and run as fast as your legs can take you.
August 2017 I finished my Advanced Diploma of Naturopathy, which qualifies me to practice. I decided to upgrade my qualifications to a Bachelor of Health Science specialising in Naturopathy, so in September I jumped into Uni taking on 4 subjects, determined to finish this degree as quickly as I could. I also started the ball rolling on setting up my practice. Around the same time I had some routine blood test taken and a couple of things came back abnormal, higher than they should be, one being ALT, a liver enzyme and ANA, antinuclear antibodies. My Dr advised me to retest just before Christmas to make sure that they had settled down.
Two weeks left of the semester, I was starting to feel unwell, nauseous mostly and tired. I put it down to a big semester and usually once you stop you feel a little under the weather.
I had my pathology request to redo my bloods so I went and had that done at the beginning of the second week of not feeling great. My weight was dropping and there were a few signs that things were not right. By Friday I was struggling and my husband sent me to the Dr. My regular Dr was away so I saw another Dr, told him I wasn't feeling well and that I had redone some bloods earlier in the week and does that show anything? He found the results and had a double look and said that my ALT was 1700, normal is below 35! He advised me to go straight to the hospital and naturally as I can be stubborn, asked if I had to? He said we can redo the bloods and get an ultrasound of my liver and see what happens, however if there is any change and if I started to feel worse, go straight to emergency.
My daughter had driven me to the Dr and so we went to get more blood taken, on the way I really started to feel bad, we stopped in the car park and I just couldn't go in, I knew I was going to be sick. I had bought a container with me just in case and it was needed. I relented and she drove me straight to emergency. By this time I was actually feeling better and was regretting my decision to agree to go to the hospital, but we were already there, so lets see what they say. I'm sure I'll be home later that day!
I explained to the nurse that I felt silly for taking up their time and I was feeling ok now but here were my recent blood tests and my GP told me to come. She took one look and said no we will take you in so a Dr can see you.
Within about half an hour I was taken in, assessed and a specialist from the Gastro team would see me soon. It wasn't long before he arrived and started discussing my case, asking lots questions, Smoker? No, Alcohol? No, Drug use? No, Needle use? No, what does this all mean? You do look yellow and your Bilirubin is very high.
We think you may have Autoimmune Hepatitis! What is that? Hepatitis literally means inflammation of the liver, Autoimmune is your body attacking yourself and in my case my body was attacking my liver. Our main priority is to stop you going into liver failure and requiring a liver transplant!
What? Why? Is this really happening to me? My world started spinning and I was losing control.
Well we don't really know, it's a rare disease, it could be genes, environment or stress that contributes. Oh there it is again, a rare disease and I have another one!
The tests needed to confirm the diagnosis, before any treatment, was a liver biopsy, MRI and an Ultrasound; being a Friday nothing will really get done till Monday so we are admitting you.
I didn't know what to think or feel! Stunned, shocked, overwhelmed. Hepatitis!! Just that word alone makes you feel ashamed, dirty and unclean. It's not something you want to tell people about. What will people think?
It wasn't till Tuesday that the tests started to happen. I had the biopsy on the Wednesday, up until then I was strong, believing the best. As they wheeled me into my room after the biopsy, I was told not to move for four hours as there was a risk of internal bleeding, Steve walked in the door and I lost it, completely. Tears poured down my face as I tried to come to terms with what was happening. My life was spinning out of control. I felt like a lost little girl, alone, fighting for my life. What should be the best years of my life was turning into a battle for health; for survival.
The other illness they wanted to rule out was Wilsons disease, after a quick search, that was the disease I wanted, if I had to pick one! It was more manageable and you didn't need to take medication. That was not to be and finally on the Thursday the results were in, from the Biopsy, MRI and ultrasound. Autoimmune Hepatitis is the official diagnosis. Devastated! How can this be? I eat really well, exercise daily, don't drink, don't smoke, don't take drugs!
Why me? No one had any answers.
The first aim was to reduce my ALT, the longer they stayed high the more chance of damage to the liver cells. High doses of Corticosteroids intravenously every 6 hours. Every part of my being was screaming not to have medication. I knew what they could do, I knew the side effects, the long term risks, I had just finished studying Drugs and Pharmacology. My heart was screaming NO, but I knew that I had to relent and use these drugs to save my life.
The medication started working quickly, the drop in ALT was rapid to start with and after a few days on IV I was switched over to tablets. They wanted to monitor me with blood taken daily, they weren't ready for me to leave as yet. I was still losing weight and a Dietitian was sent to see me. The food was horrible so I wasn't eating anything except what my family bought to me from home. We want to put you on Sustagen! No thank you, my family is bringing me food. Food is medicine, right?
I do want to mention that the hospital staff were amazing, kind, considerate and accommodating. I will forever be grateful for the care they gave me, my Dr was also amazing and very open to my thoughts as a Naturopath, what I wanted to try and did I have his support. He researched everything I gave him and although he believed the conventional way of treating was the only way to go, he was open for me to take natural supplements as well, as long as we discussed it first. I was thankful for him and his kindness to me. He is a rare one, as I was to learn not everyone was going to be as open as he was.
Day 11, 18th December 2017, 7 days before Christmas and I was allowed to go home! Yay. They finally agreed that Steve and I could go away camping (which was to be remote for two weeks) but we had to compromise and be somewhere so that my bloods could be taken. Heading bush was just what I needed, time to find myself, get grounded in nature and feel the sunshine on my face.
Part 2 to follow and see where I'm at today.