Discovering PKD

Guest Post – Vanessa Cullen

Like many people with Polycystic Kidney Disease, I was not aware of having this affliction until my thirties and were it not for martial arts, I may not have found out until my kidney function seriously started to decline. This is a common story 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. In just a few weeks I was going for my Jujutsu black belt grading. Being thrown to the floor was a near daily occurrence. It was without a thought that I hit the ground to start my warm up that Saturday afternoon.

At home afterwards I went to the toilet and froze because of what I saw. On auto pilot I got into the shower, dried, dressed and then went to the toilet again. Then I phoned my best friend “Umm, I’m weeing blood … what should I do?” I was shaking and quite scared. “Go to the nearest hospital!” he replied.

The hospital wasn’t very busy so I walked straight up to the desk and said “Hi, I was at kick boxing training and nothing seems to hurt but I’m weeing a lot of blood”. The nurse looked unconcerned, asked me a few questions and handed me a sample jar with directions to the bathroom.

Back at the desk again I 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, her face suddenly changed to one of great concern and she said “Right, well you better come straight in then”.

A very young doctor sent me for scans and asked a billion questions. Taking my vital signs he remarked that my pulse and blood pressure were a little high. Eventually he sent me back to the waiting room with Panadol, blanket, pillow and instructions to drink as much water as I could while waiting for the scan results.

The night wore on. When the young doctor reappeared he 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”.

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. “Hi, the doctor said that once I stop weeing blood I could go home … so I’d like to go home now”. She replied ”Sorry, you can’t until after the doctor does his rounds and discharges you and that won’t be until after 9am”.

When the doctor came it was with a kidney specialist and a troupe of students. They talked amongst themselves and handed me a discharge letter and an envelope full of scans with instructions to see my GP the next day. It wasn’t until later that night that I opened and read the letter. It said that my kidneys had the ‘appearance of being Polycystic’. 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 show their massive scale. I read the blogs of people in daily suffering and chat rooms of PKD sufferers comparing their symptoms.

I must have fallen asleep but upon waking decided I was being melodramatic and probably had it all wrong.

I didn’t have a regular GP so went to see the first available doctor at my local medical centre. handing him my letter and scans. He jumped in coldly “It says you have Polycystic Kidney Disease and if you’ve already googled it then you already know all there is to know. Here’s a referral to a Nephrologist who can answer any other questions. Good luck”.

I wandered bewildered back to my car and started to cry. It was months before I could get an appointment with the Nephrologist. During that time I researched everything I could about PKD and became acquainted with the emotional roller coaster 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 and elation. Whilst this cycle continues, the lows have become progressively less low and the highs less high as I find equilibrium in a kind of acceptance.

The Nephrologist confirmed my diagnosis and was much more helpful with information and explanations. My immediate family members were all screened and cleared as negative for PKD, which was a huge relief despite the fact that it makes my progression somewhat more unpredictable.

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

Vanessa Cullen is an Ambassador for PKD and also has her own website morethanPKD which includes lots of information on living well with PKD


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