Discovering PKD

Like so many people with Polycystic Kidney Disease, I had no awareness of having this affliction until I reached my thirties and were it not for my involvement in martial arts, I may not have found out until my kidney function really seriously started to decline. This is a common story of not knowing as PKD often shows no outward symptoms until mid life and our bodies can seem quite well right up until near failure.

Here’s my diagnosis story:

It was November 2012 and I was training six days a week doing weights, Muay Thai and Jujutsu. In just a few weeks I would be going for my Jujutsu black belt grading and would hopefully step into the Muay Thai ring for the first time early in 2013. I had worked very hard for the last six months to get in great shape for my grading and had lost about 20% of my body weight in  around nine months. Full contact sparring was nothing new to me and being lifted and thrown to the floor repeatedly was a near daily occurrence. It was therefore without a thought that I hit the ground with a soft backwards break fall to start my warm up at Muay Thai that Saturday afternoon and it wasn’t until weeks later that I would reflect on that moment as actually having felt a bit of complaint from my mid back.

I stepped into the training ring and I got kicked, and I got punched. I learned to keep my hands up and not to duck my head down to within knee range. I was a Muay Thai beginner and my partner was far more experienced so it was a good and tiring lesson. I took the knocks as I was used to and tried to implement the tips I was given. When it was my turn to freshen up in the bathroom afterwards I cried as I frequently would after any sparring. Not out of fear or pain but out of frustration at my own inadequacies as a fighter, over the wounds to my ego, and because the adrenalin would bring every emotion from during the week into an uncontainable  surge that would over brim at this opportunity for release. Sparring was always difficult, always confronting, always emotional and always cathartic for me.

At home afterwards I stripped off my sweat soaked clothes to get in the shower. I went to the toilet and tiredly glanced down before pressing the flush. Then I froze, stopped in my tracks because what I saw was not at all right. On auto pilot I got into the shower, washed, dried, dressed and then walked back to the toilet again. I stopped. I looked. I flushed. Then I phoned my best friend “Umm, hi! I just got home from Muay Thai and I am peeing blood and I mean REALLY peeing blood! What should I do?” I was shaking and really quite scared by now. “Go to the nearest hospital!” he replied. And so I jumped in the car and drove to the nearest Emergency unit.

The hospital wasn’t very busy so I walked straight up to the desk and told the nurse “Hi, I was at kick boxing training and I must have been kicked or something because whilst nothing seems to hurt I am peeing a lot of blood”. She looked unconcerned, asked me a few general questions and then handed me a sample jar with directions to the bathroom. I felt consoled that this was probably just something minor and silly, figuring that even a bruise is a type of internal bleeding anyway. I did my business and then smuggled the sealed jar back across the waiting room. Standing at the desk again I caught the eye of the nurse and deftly revealed the sample jar that I had been keeping hidden so as not to freak out anyone else in the vicinity. The nurse looked at me with a shocked and incredulous expression and asked me probably the craziest question I have ever been asked “Is that yours?”. Pause. Stare. Thinking… “Uhh, no, I just make a habit of walking around with random vials of blood/pee…”. I gathered my thoughts and answered “Umm, yes”. Next question, nearly as dumb as the last “Are you sure it isn’t ‘that’ time of the month?”. Pause. Stare. “Oh my god woman, I think that, at over 30 years of age, I would know the difference between a period and this!” is what I should have said but instead I only managed “Yes, I am sure it is definitely NOT”. I think I must have looked horrified that I was placing my trust in this woman’s skill however, I saw that it was enough of a reply to get her to snap out of it as her face suddenly changed to a look of great concern and she stood and said “Right, well you better come straight in then”.

I was assigned to a very young doctor who sent me for scans, asked a billion questions and failed multiple times at taking a blood sample and inserting a drip line into the back of my hand. Taking my vital signs he remarked that my pulse and blood pressure were a little high. I deadpan pointed out that it was probably due to the stress of being in a hospitable emergency ward. Eventually he kicked me back out into the waiting room with a couple of Panadol, a blanket and a pillow and instructions to drink all the water I could whilst waiting for the scan results. My Mum and best mate had arrived so I filled them in on what had passed so far and then sprawled out over a couple of chairs to watch TV.

The night had worn on when the young doctor reappeared. He squatted down next to me and said “You have some cysts in your kidneys and we think one of the cysts is bleeding but we can’t see it on the scans. So you’re going to have to stay in overnight until your urine is clear”. I hate hospitals and I actually felt tired but otherwise fine so I wasn’t pleased by this news of having to stay, especially alone, in an Emergency bed all night. As the nurse tucked me in I took her instructions to “Keep drinking plenty of water” as a resolute mission. I would determinedly stay up all night drinking and peeing until all was clear and I could demand to go home!

After a night of watching the clock, my patience finally ran out at about 7am the next morning. I wandered over to the nursing station and waited until the nurse finally looked up from her chocolate bar and magazine. “Hi. I’ve been sitting in that bed over there all night drinking water because the doctor said that once I stop peeing blood I can go home. It appears to have stopped so I would like to go home now please” I asserted. Hiding her chocolate and magazine under some paperwork she replied ” Sorry, you can’t go home till after the doctor and a specialist do their rounds and discharge you and that won’t be until after 9am”. “Ok” I said ” But I haven’t eaten anything in over 14 hours and I think it’s highly unlikely I am going to need any surgery at this stage so is there any chance I can at least get something to eat?”. I get pretty cranky when I am hungry and by this point I was starving. “Oh, sure” she consented “There’s a vending machine just down the hall. I’ll buzz you out and then back in once you grab something”. I used the pay phone to summon reinforcements and then hunkered back down to wait the morning out with a nut bar (the edible kind, not the nurse).

When the doctor came around it was with a kidney specialist and a troupe of students. They talked amongst themselves and told me nothing except that I could go. I was handed a discharge letter and an envelope full of scans with instructions to see my GP the next day. I was out of there like a shot and straight to a cafe for a massive breakfast of bacon and eggs! It wasn’t until I was alone, later that night, that I opened and read the discharge letter. It said that my kidneys had the ‘appearance of being Polycystic’. I thought “poly means ‘many’, ‘cystic’ means cysts… But what does that actually MEAN?”. So I turned on my computer and I googled ‘Polycystic Kidneys’… And that’s when time stood still…

My screen filled with graphic images of football sized kidneys, filled with bubbles, lying on operating theatre trolleys with rulers next to them to give an appreciation of their massive scale. I read the blogs of people in daily suffering and the chat rooms full of PKD sufferers comparing their symptoms and insisting that nonetheless this must all be part of Gods plan. There were pleas for money from people in poor countries with no hope of ever receiving dialysis or a transplant and there were sites full of medical jargon and lists of symptoms every bit as bad as the disease itself. The only positive stories seemed to be from transplant survivors but even these betrayed an underlying dread of rejection. Perhaps it was my tired and shocked brain that could not decipher the rays of hope amongst all this darkness, but that night, as I read on and on, all I could find was despair.

I must have fallen asleep at some point but upon waking I decided that I was being melodramatic and that I probably had it all wrong, that none of this applied to me and that there was certain to be a difference between ‘Polycystic appearing kidneys’ and ‘Polycystic Kidney Disease’. Being no fan of doctors, thanks to having spent far too much time in their company as an ill child, I had no regular GP so I went to see the first available at my local medical centre. I handed him my letter and scans and said “I went to hospital peeing blood and the letter says I have Polycystic kidneys but noone really told me anything so…”. “Have you googled this?” he interrupted me. I froze “How did he guess?!!!”. “Umm, yes, well…” I stammered. He jumped in again coldly “It says right here that you have Polycystic Kidney Disease and if you’ve already googled it then you already know all there is to know and there’s nothing more I can tell you. It’s what I would have suggested you do anyway. Here’s a referral to a Nephrologist who can answer any other questions you might have. Good luck”. And that was that. He handed me the referral letter and ushered me out of his office. I wandered bewildered back to my car, got in, sat there for a moment and then started to cry.

It was months before I could get an appointment to see the Nephrologist. During that time I researched everything I could about PKD and I became acquainted with the roller coaster of emotional states that news like this tends to produce. There were days and weeks of fear, anger, resentment, denial, disbelief, shock, resignation, acceptance and even episodes of a crazy kind of hope, energy, elation and sense of invincibility and freedom that seemed to stem from a belief I had that at least now I knew how I was likely to one day die. Over time I have observed that whilst this cycle continue, the lows become progressively less low and the highs less high as I find an equilibrium in a kind of acceptance grounded in the real fears, facts, hopes and unknowns. But for the first twelve months I was a mess and my whole world suffered as a result. But I digress…

The Nephrologist confirmed my diagnosis and was much more helpful in terms of information and explanation. My immediate family members were all screened and cleared as negative for PKD which was a huge relief despite the fact that it does make my progression somewhat more unpredictable. PKD is a genetic disease generally passed down through families but a very small percentage of sufferers, like me, have no family history of the illness. My Nephrologist and I even joked that I could well have pride of place as being truly ‘one of a kind’ in that I have had two entirely separate genetic kidney diseases in my lifetime; Nephrotic Syndrome as a child, and PKD as an adult.

At the time of writing this I am in Stage 2 (there are five stages in the progression to renal failure) and my blood pressure tends from low to average, which is a great sign so far. I keep myself alkaline through diet and my Nephrologist gives me a decade, at a guess, before things might start to really go down hill. I’ve had to give up activities that were previously my life blood, have to take some day to day precautions, and have had to consider some matters of financial and future planning that would not cross the minds of most people in their thirties, but otherwise I have very few symptoms and am very well for now 🙂

Have you got a diagnosis story that you would like to share? Feel free to comment below.

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