“Hi there, I’m Holly! I’m 27 years young and I’m lucky enough to be from Melbourne, Australia. This is my journey with Kidney Failure/Disease which soon turned into Chronic Kidney Disease.
I was born with a rare Kidney Disease called ‘Thin Base Membrane Disease’. This wasn’t really symptomatic apart from leakage of protein in my urine (protein leakage actually damages the Kidneys) which meant that my Kidneys would eventually deteriorate over time. My specialists told me this would occur when I was around 40+ years old. I had plenty of time yet! Or so I thought.
Over the years I had routine check-ups including blood tests and the odd Kidney biopsy to check the function of my Kidneys and see if anything had progressed. I basically got the ‘all clear’ with tri monthly check ups from the age of 5 until I was about 23. I turned 23 and got put on to a new specialist. I had my usual blood test and check-up, although this time the results were different.
My Kidney function was actually slowly getting worse this time around. He told me that by the time I was 30-35, my Kidney function would start going downhill instead of the 45+ I was hoping for. That shattered me, I thought ‘this was the beginning of the end’. A few days passed and I got over it. ‘What’s the point in worrying about something that hasn’t happened yet, and might not even happen’? I was put on a light medication to help protect the kidney, so life as I knew it went on.
I went on to travel Europe twice having the absolute time of my life. It gave me such a taste and zest for life I just knew I was destined to be seeing different parts of the world and that was my plan. I returned home from the Greek Islands in the winter time, and the next winter I’d be moving to IOS (Greek Islands) and doing a season over there in their summer. I worked full time at NAB – one of Australia’s major 4 banks as a National Operations and Sales Associate in the Mortgage Broking field. It allowed me to travel Australia every year for events I’d run, it was a great gig. In February, 2017 all of my dreams and plans were brutally stolen from me.
I went to Bali on a short vacay in February 2017; I love it there! I’d been many times before so I was really familiar with the place and what to be careful of in terms of drinking the water and what foods to steer clear from. Well – I ended up sick anyway! I’d contracted an infection which had spread to my kidneys and destroyed their function to just seven per cent, so I basically thought ‘this is it for me, I’m going to die, there’s no way out of this now’. My specialist said that I needed to leave work immediately and go straight to the hospital. I was admitted to the hospital, rushed to ICU and put on dialysis a few hours after fighting for my life for a few days. I didn’t even know what Dialysis was, all I knew was that it was the end of the road type stuff, life support, waiting for a new organ, life changing. I had tubes put into my chest which circulated blood out of my body, put through the dialysis machine which cleaned the blood from toxins that my kidneys could no longer do on their own, and took fluid off me which I could no longer pee out – yep, I couldn’t pee anymore.
Imagine being so thirsty and you can’t drink anything? It’s torture. A few times I tested this so-called theory. I rebelled and had a glass of water – big deal a glass of water right!? Around 1am I woke up literally gasping for breath. My lungs had filled up of fluid where the air we breathe would usually go, so I had no room in my lungs for air. I was drowning in my own fluid, I couldn’t even say a word without panting like I’d just run 6kms without coughing up fluid gasping even more for breath. The ambulance always got called which would rush me to ICU which I’d spend another 25 hours on Dialysis. I tested or rebelled against my fluid restriction a few more times. For those looking in on this story you’d think what an idiot why would she do that? Not being able to drink was the most brutal mind game and traumatizing thing I’ve faced. It’s harder than you think –try and stick to 750mls every day for a week – this includes soups, coffee, tea, juice, water, liquids in foods like jelly, veggies, fruit –in the end only drank 500mls a day, and the other 250mls were counted in the foods I ate daily.
ICU was scary, it opened my eyes to so much. I saw people admitted that never came out again, and the screams of pain from the other patients still haunt me today alongside the alarm that got raised when someone was in cardiac arrest – sometimes they never came out either. People all around me were dying, so I assumed one day that would be me.
To me, ICU was death row. It’s where you go when you’re going to die, or so I thought. Every time I went to sleep I wasn’t sure if it would be my last night or not. I remember having to say goodbye to my family twice due to close death experiences. I passed out and don’t really remember much apart from facing death being very peacefully twisted. There’s nothing else you can do but be brave for your family. I remember laying there, I don’t know if I was conscious or not and I thought ‘have I achieved all I want to achieve yet? Have I done everything in life I wanted to? Was I ready to leave the world yet?’ No, no and no. This wasn’t my time to go, something told me to keep fighting because something or someone was telling me it wasn’t my time. That in itself – facing death, is one of the major contributors to my severe anxiety today. It’s something you can’t begin to describe to anyone. I spent the next two months on the ward – alas I was out of ICU! Hospital soon became my home. The 4 walls became all too familiar that when it was time to go home I didn’t want to, I was so used to being in a small room that anything outside of that space felt unsafe.
During this stay, my specialist advised me that in some cases a type of ‘Chemotherapy’ has been proven to almost ‘reboot’ the Kidneys into action again. At this point, I was willing to try anything to avoid going on Dialysis. I had 4 rounds of Chemo at the age of 26, sitting in a room where everyone around me was dying, it didn’t take long for my mind to believe I was one of them too. Chemo is my 4thtrauma addition to this story. I don’t even have to explain why – try saying the word Chemotherapy out loud and it instantly gives you cold chills. I lost 85% of my hair, my eyelashes, my eyebrows, my health and sanity. If someone had told me that at the bright age of 26 I’d be going through all of this and sitting here right now writing about this I would have called them a clown. It’s funny and sad how invincible we ALL think we are and can be, let me tell you – you’re not.
I spent the next 18 months of my life on a dialysis machine both at home and in a clinic. The clinic Dialysis is called ‘Haemodialysis’, and the one at home is called ‘Peritoneal Dialysis’. Haemo was when I was stuck in a chair for 3-4 hrs, 3-4 x per week hooked to a machine from the tubes coming from my chest, cleaning my blood of toxins and pulling fluid off (because I can’t pee anymore and I’m on a tight fluid restriction) which made me and most people quite unwell.
In September, 2017 I had surgery to have a tube inserted in my tummy which was a gentler form of dialysis (Peritoneal). I would set the machine up and connect myself every night for 9 hours while my friends were out celebrating and enjoying life in their twenties. I now had a machine keeping me alive in my room, which I was controlling and connecting myself to – another trauma.
Time went on, and I got sicker. Although the new form of Dialysis was better because it meant less hospital visits as it was a gentler version, my Kidneys weren’t getting better and had zero improvement in function. The chemo had failed.
The Transplant talk started as I got sicker. The average wait time for a new Kidney in Australia for my cell tissuing type is 6-7 years. I am lucky enough that I have an amazing family that never stopped supporting me! Everyone put their hand up to donate a Kidney, literally everyone. Unfortunately, not everyone qualifies to be a donor (all sorts of factors play into this) but the three people that did were my Aunty Judy, my Mum (Shelley) and my Dad (Mick).
My Aunt and Dad both got to the final stages! I couldn’t actually believe it – I was getting a new Kidney! Excitement and fear filled my soul entirely. This is finally it I thought, I’m going to be well again and finally get my life back! The sacrifices I made and the things I was forced to quit in life had taken its toll on me mentally and I was beyond keen to get back into the things I missed out on! Swimming, the Sauna, training at the gym, work, being social, drinking more than a mouthful and feeling generally well were just a few things that I lost due to Kidney Failure.
17thApril 2018 – my new favorite date which I’ll celebrate every year. Why? I got a transplant! Dad was to be my donor. A few things I felt; guilt, happiness, relief and a whole lot of ‘what if’ started playing on my mind every hour of every day. Both recipient and donor are at serious risk of many things like bleeding out, rejection of the kidney from the recipient, stroke and death just to name a few I can’t seem to forget. All operations come with risks, but somehow these seemed really likely to me.
I woke up from the anaesthetic and I was alive – I couldn’t believe it! My dreams came true; I had this beautiful gift and a second chance at life which not everyone gets, a bond with my best mate (my dad) that would be forever unbreakable, and this amazing new chance at life. To this Day, Dad’s doing great! It’s roughly 11 weeks posttransplant and we’re both doing amazingly well.
Even before my transplant, Kidney disease along with many other diseases are called the ‘Silent Disease’ because we aren’t covered in a huge visible rash, nor do we have any other visible side effects apart from looking unwell, the same goes for recovery. Even though I look ‘better now’, doesn’t mean I am better. People constantly question me and state that ‘I look better now so when am I going back to work’ or ‘why aren’t you back at work yet’ or ‘you look fine, what are you doing now’?
I was hospitalised 3 times post-surgery as I was violently ill from the antirejection meds I’m on now. I still have both physical and mental effects from them, some of which will now sit with me forever, as long as I live whether I like it or not. That’s hard to deal with.
Another thing that gets thrown on you last minute is that your life isn’t back like you had planned at all, a very rude awakening. You think that once you recover you’d be on your merry way back to yourself, back to work, back to your travel plans since you haven’t been able to travel all of this time due to being pinned to your home by a Dialysis machine, and back to the social butterfly you once were.
I attended daily visits to the renal clinic which consisted of a blood test and then I was seen by one of the renal registrars to discuss my blood results from the prior visit. My kidney function (which always fluctuates) liver function (from the steroids), blood sugars (I’m now at risk of Diabetes) my heart (heart disease is also a factor now) are all checked just to name a few of the potentials at stake here. This is all carefully watched due to the meds I’m, which I thought were keeping me safe? I know they’re saving my Kidney and my life, but it’s also put my life in danger again, which I thought I was past. But my kidney function is getting better each time I’m checked. So how am I now? I’m great. Not every day, just for now.
My life isn’t the same, it never will be the same, and that alone is a bitter pill to swallow. All of this time you think you’ll finally get your life back which you do get to some extent, and that extent of it is absolutely fabulous don’t get me wrong, I love waking up feeling well now and not having to rely on a machine to keep me alive. But now, I don’t have a backup plan, there isn’t a new kidney waiting there for me if shit hits the fan and my Kidney decides to pack it in one day, and the biggest reality check of them all – guess what, new Kidneys don’t last forever.
This great new life isn’t as easy as I thought it would be. One of the other antirejection meds I have to take has stopped my sleeping pattern, so most nights I don’t actually fall asleep until 3am no matter how tired I am. You have to be so strict with the timing of your medications every day – it needs to be the same time each day in order to get the best results. I take around 17-19 tablets per day (it fluctuates pending my blood results) which all have secret nasties that affect me, I seem to be still finding out about to this day. I worry about my Dad – he’s at risk of Kidney Failure now, so I have to live with that. These are just a few things of the many factors that I have to live with and stress about daily now that make up the role of my ‘Post Traumatic Stress Disorder’. I suffer anxiety almost daily – the meds don’t help with mental health and some of them impact my mental health.
Overall, I’m alive! I’m truly blessed that I’ve come out of this story much better, brighter and definitely stronger and wiser. I’ve learned a lot about myself and life as I knew it to be. I notice and appreciate small things that I once took for granted like the glare of the sunrise every morning, the birds singing outside my window, the wind on my face, the fresh smell of a new season and the laughter of a loved one. These are things I only noticed for just a second or not at all.
Every day is treated as it could be my last because I’ve been in that position a handful of times which is something nobody should ever have to experience. If I knew someone who was as sick as I was, I’d want to help answer their queries and questions around what was happening. I felt like I was the only person in the entire universe experiencing Kidney failure at its worst, and I know I wasn’t the worst out there. I wish I had a FAQ page on why I was feeling what I was feeling, if it was normal and someone to tell me it’s ok that I look like this or feel like this now. So my writing began. I sat in my hospital bed for 11 hours straight creating my website and writing about the things I was experiencing that very moment post receiving my new Kidney. My passion for inspiring others and educating them on what I wish I knew back then is the driver behind all of this today. Every picture I post touches or helps someone across the globe, makes them feel like they belong and that they aren’t out of the ordinary for the way they are feeling. I soon realized there is such a gap in society around the importance of education of Kidney health, understanding the role of the Kidneys and what to do to prevent going through what I had. If I had a guide to read to help me prevent what I got rudely handed I would have bought the entire shop!
We all handle things differently and the most important thing to remember in this day and age, is that it’s ok to not be ok all of the time! We are who we are, these events don’t define us they just make up a small part of who we are today. I’m a believer and that’s what got me through all of this – I want to be the thing that helps people start believing too. This entire experience has been a blessing in disguise, I’ve found my calling in life and I’m determined to shine a light on the things that get brushed under the carpet because they aren’t polished and shiny like ‘everyone else’ seems to be. After all, that’s the sole reason I’m still here today; because I believed.”
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