Ruth S.

My FSGS story so far 

In trying to put words down to tell my story, I needed to remember things I’d squashed and put aside for self preservations sake. Being overwhelmed can make a person non-functional, and I’m a survivor so compartmentalizing is a good strategy for me. Take each challenge – face it with facts, options and guidance then navigate your way through. I’m also a science nerd, and for me, method, knowledge and seeking answers gives me some sense of control over what can only be described as unforeseen and uncontrollable illness. 

I have to go back to the true beginning of the medical root of this – let’s call it a river. It’s not a journey, I dislike that term. It’s so much more like a river because it has tributaries, some parts are smooth and serene, but lurking downstream are rapids, rocks, waterfalls and chasms. And once you’re rafting down it without paddles, you can’t turn back, there’s no way home, it’s all new and frightening you have no idea what’s coming – so you just hang on for dear life hoping and praying to the universe to please get you out of this alive! So. My river began with a belly flop into a deep pool of sudden and unexpected mystery illness in November of 2011. I woke up one morning and knew that something terrible was happening to me. Overnight, the lymph nodes in my neck, chest, armpits and behind my ears had swollen to massive proportions. Looking in the mirror I didn’t recognise myself. I could barely speak and I had trouble breathing. Not just because of the swollen throat – but also because my lungs were heavy and burning with each breath. Every muscle and joint felt stiff and painful, I was pale, sweaty and so weak. Weakness like a gust of wind could have knocked me down.  

I wasn’t going to go to my local hospital. I’m sorry, but I had no faith in them. I’d been there and done that as the sole carer for my mother who was battling with terribly complex and rare medical problems thanks to a neuroendocrine tumour. A horror of a thing. I mainly dealt with her specialist team at a big city hospital an hour and a half away. Her main specialist was a brilliant endocrinologist who was well connected, and happened to have previously been head of the ED there. So I took myself off, not to emergency there, but I snuck through the outpatients department and made a bee line for his door. I bypassed all the reception desks, ducked past his nurses stations, walked into his office and said “please – I need your help”. 

We had been on first name basis for years, I even had his personal mobile number – he cared that much for my mother and me. He didn’t say a word when he saw me, he was always very calm and composed. But his colour changed, and he stared. I could see he was looking at the swellings in my throat, neck and collarbones. He told me to sit and he left the room. 

Things moved fast from there, it was like a whirlwind. Some of it is still muddled in my memory partly from fever and partly because once things got started I just surrendered to the process and let them all do their parts. IV’s, blood work, cultures, CT, x-rays, UA, all done in record time and before I knew it I was on a ward being monitored. Teams came and went, huddled discussions, prodded, poked endlessly. I gave my history at least four times. I had no relevant history other than well controlled asthma, hayfever, and I work in a stat pathology laboratory as a technical officer performing analysis on body fluids, and I was also a blood bank officer doing types, crossmatches and antibody investigations. 

The brains trust couldn’t work out what was wrong with me. I didn’t fit in any one diagnostic pigeon hole. Two weeks in hospital and my condition wasn’t improving. I was losing so much weight, analgesia wasn’t working, I was in pain all the time. I had episodes of delerium. I was sweating 24 hours a day, and the low grade fever persisted. Fine needle aspirates of lymph nodes were inconclusive – but showed “something” abnormal. Culture’s and titres kept showing nothing. So three weeks in they put me in surgery for a full lymph node biopsy/excision because now they’re wondering if I have Lymphoma, and not only tell me this, but start preparing me by saying “we think so” and set me up with counselling and give me brochures to read.  

Imagine my mindset at this point. I’m facing this, still feeling awful physically and the temporary care I had in place for my mother at home expires. She’s not coping. Vascular dementia, AF, multiple strokes, she’s housebound on oxygen, her next round of chemo is due, and my work rings to see when I’m coming back because I just ran out of leave. I’m internally screaming at this point. 

The biopsy returns inconclusive, massive inflammation yes. But still no diagnosis. I collapsed on Christmas day, they let me go for a walk as a treat, they found me unconscious in the lobby. I just wanted to smell the outside for a few minutes but it was too much for my body. I’d lost 15kgs by this time and i was eating like a horse. High calorie food and snacks all day long but it was dropping off me. I was weak and incredibly fatigued. Christmas and New Year come and go. I’m barely responding to multiple antibiotics and anti-inflammatory drugs.  Then finally at the end of January the infectious diseases team had a breakthrough! After multiple rounds of testing, it came back positive for Q-fever!  I had an atypical infection of Coxiella burnetii. Only discovered in the 1930’s in Queensland Australia, early patients presented with persistent fevers and doctors used the notation “Q-fever” meaning query a fever. The name stuck after the discovery of the organism responsible even though it can still cause confusion to this day. However, I got it – bad. Not only that, but in a small number of people we develop chronic Q-fever. It can mimic a bunch of things, and can trigger autoimmune conditions. It can look like Lupus, it can look like lymphoma take your pick, it just does a number on your immune system and confuses the hell out of doctors. And of course, the definitive treatment in the acute stage is among other things – Doxycyline. Guess who is allergic to Doxycycline? 

So, scratching head immunology team comes up with a plan. Let’s desensitise this patient to Doxy, then put her on a huge long course of it and never ever let her take it again. One problem, the desensitisation treatment is only available from the USA, it’s going to take time to get it approved and imported. It’s now February. I’ve been in hospital for nearly three months. I’m broken in every possible way. But finally my treatment arrives, I spend a terrible day being dosed at different rates to an antibiotic I’m allergic to until my body is so overwhelmed it stops reacting. I’m finally sent home armed with boxes of antibiotics to take faithfully for the next few months. 

I never fully recovered.  

I was never me again. Sure, I went back to work, light duties at first. I kept on being my mum’s carer, I tried really hard to shake off the lingering problems but one thing after another got in the way. The chronic fatigue, a headache that persisted for two years, muscle and joint pain, dry eyes, dry mouth, skin changes, hair loss, rashes. 

Let us fast forward now. My mother dies while I have her in respite care, because i was so exhausted i couldn’t do it any more, the company I worked for let me transfer to a rural branch that had less hours and responsibilities because I couldn’t do it any more. So many specialist visits with no real answers, it might be lupus they say. You have Sjogrens syndrome. It could be Fibromyalgia. Yes, let’s call it that. Here’s some more Prednisone and hydroxychloroquine! But don’t forget to get your eyes checked regularly because it can cause blindness. Many ED trips, strange allergic reactions, whole body hives seemingly from nothing, angioedema in the middle of the night, more developing allergies to medications, anaphylaxis from IV iodine during a CT. I can’t get a clear answer from anyone. I lose my job, I’m in hospital too much. I lose my home. I’m living in my car. I finally find somewhere to live cheaply because the government tells me I’m not sick enough for a disability pension. I have to keep looking for work to keep my unemployment benefits. I’m alone, there isn’t a partner there are no children (I was a career woman who never expected this), only two living relatives a long way away who I barely have a relationship with or speak to.  

Then. Finally. In 2018 I got really sick. I woke up one morning to find my legs swollen with fluid, my face impossibility puffy and could barely see out of my swollen eyelids, I was having trouble breathing with audibly wet wheezing. I go to ED. Within hours I’m told I’m in kidney failure. During that week stay in hospital being diuresed and tested, my then and now renal specialist gave me the full lowdown. The renal biopsy diagnosed FSGS I had nephrotic syndrome. Anaemic, low albumin, electrolyte disturbances and renal failure and I was having a hypertensive crisis.  

In the years following that, I’ve rattled with medications including multiple anti-hypertensives, diuretics, immunosupresants (tacrolimus – one beast of a drug), phosphate binders, metabolic buffers, antidepressants, ppi’s, vitamins, minerals. At one point I had 21 current prescriptions including EPO, and epi-pens. Poly-pharmacy is my nickname. Let’s not forget about the iron infusions I needed, or the regular blood work including trough levels for the Tac but always being mindful of vein preservation!. Or the horribly restrictive no sodium, low potassium, low protein and IBS diet!  

I hated how I felt, I hated how I looked, of how it was robbing me of my energy, but I was in partial remission and my gfr was oh so slowly falling. I had time. And that is a very, very precious gift. Of course the outcome was inevitable, as time went by symptoms worsened, nausea, loss of appetite, constantly itchy all over, and annoyingly – hiccups! The fatigue only grew worse along with restless legs and debilitating cramping. I guess it came along so slowly I just got used to feeling like that. My world became so small and I stopped making any meaningful plans. Life was purely survival, medical visits and home to bed I couldn’t truly rest in anymore. Then came time for my fistula to be created. The surgery was fine! It wasn’t as bad as anticipated, but of course my luck just didn’t hold. I developed a steal in my hand. It was cold and blue all the time, and the darn fistula itself became very high flow. A real problem. So, after cardiac workups, more ultrasounds at a hospital a long long way from home (four hours travel each way), the vascular team decides a graft is the answer. No one told me how painful it would be or that the swelling would be so profound, or that I wouldn’t be able to look after myself one handed for about ten days. I’m intollerant of opiates (sphincter of Odi dysfunction) meaning I can’t take any! No nsaids. Paracetamol is it. I live alone. Rurally. Off grid. No help. But they sent me home. 

Thank the stars I had a good therapist – and antidepressants. I genuinely stopped enjoying life for a long while. That pit of despair had become deep and consuming. I had daily suicidal ideations, I even put a suicide kit together. I won’t give details but it was kind, dignified and efficient. Having worked for 25 years as a veterinary nurse in ICU and emergency before I went into human pathology gave me the skills, knowledge, equipment and drugs to ensure I would do it right if needed. But it wasn’t needed. I’m too stubborn despite feeling so deathly ill all the time. I needed goals, small ones at first but achievable. Have a wish list, start making plans again. Could I get a kidney? What would that be like? How fit do I need to be to qualify? What do I need to do to make sure I qualify? I want a holiday, a real one. There are still places I want to go and experiences I want to have. It’s not impossible. I’m not done yet! 

My kidneys finally gave up. I kind of knew it that day on January the 4th 2025. I didn’t feel right in such a different way. So once more to the ED. I began haemodialysis three days later. My first session started fine, some local, the needles in, no big deal, it was okay because I knew what to expect. I’d done the education seminar and unit walk through, I’d prepared. 

The universe has a wicked sense of humour. (Other than that, I did something truly terrible in a previous life and I’m being punished for it), because 15 minutes into dialysis I have a severe allergic reaction. I do remember alarms going and people stripping my clothes off and yelling for the rapid response team before I became unconscious. Now half the staff know what I look like naked, it’s a little embarrassing. But more importantly I remember their calm reassuring voices and hands when I came around. Their concern and genuine care made a really bad day a lot better, and gave me the comfort of knowing absolutely that I could trust them – with my life. They changed the dialyser and we cautiously recommenced and it all went fine from there. Phew.  

What I didn’t expect was what happened that night. When I got home, I was “buzzing” with energy and was ravenously hungry. I had been vomiting in the morning and felt utterly miserable. Here, 8 hours later, was so different. I was tired but not fatigued. Is this how it’s supposed to feel? After one session? I fell asleep after dinner and boy was it weird! I was having the most bizarre technicolour high speed hyper realistic dreams of my life. If I knew what LSD felt like I’d say that was what it was like. Colours were warm, sounds made me laugh and giggle and I felt so happy.  

Waking up the next morning there was energy like before sickness, my brain fog was gone, thoughts were so clear, I was smiling like an idiot. One session? Could it really be from just one, messed up session? Imagine how much better things will be now that the toxins are being removed and my body has a chance to work under better conditions. Okay, it’s not fun to do three times a week, but what a reward! 

I keep reminding myself that some days will be hard, to temper my expectations. Be realistic and remember the risks and possible complications. Here I am three months into HD and I still walk in every time with a smile on my face. Yes, my underlying autoimmune disease is still there. Yes, I have symptoms. Yes, there are challenges. But there is also hope, and time, and improvement. And they’re important, and life is pretty darn good.