This weekend we were due at the Tararua Hut for a long weekend of skiing and hanging out with the other tramping club members. Unfortunately the weather had other ideas most which meant Whakapapa would be closed due to high winds and poor conditions. As it was Jack’s birthday and I had already put in for two days of leave we were still keen for an adventure. We chased the best weather on Metservice and rerouted our plans to Kaweka Forest Park near Napier. As well as the finer weather we would enjoy the hot springs in the early spring conditions and hike into Te Puia Lodge.
I am barely recognisable, resembling a puffer fish with edema so bad I barely could see out of my eye lids
Jack had never been to Kaweka Forest Park before but this would be my third trip. My first was in 2011 just before I was diagnosed with Kidney disease. Looking back through old photos of the trip on Facebook my symptoms were apparent but my future diagnosis of kidney disease was unbeknown to me at the time. In one of the photos I am barely recognisable, resembling a puffer fish with edema so bad I barely could see out of my eye lids. I had been blowing up like a balloon for about 3 weeks with heavy edema in my ankles but I truly believed it was because i was studying every day for University exams and had been pretty sedentary. The edema progressively got worse and fluid started flooding into my arms and face.
During the trip I was extremely tired and felt like an absolute wreck. This would later be explained by heavy proteinuria – leakage of protein from the blood into my urine and extremely low blood albumin levels as a consequence. On the trip my logic and reason was completely scrambled and I remember having an epic meltdown with many tears because I could not find the start of the track and we were low on gas. I was in an anxious state for two days and even yelled at my hiking partner for putting too much water into a milk powder mix. This out of character behaviour was the first sign that something might actually be really wrong with me. It wasn’t until we returned from Kaweka to Wellington and I was finally able to see someone at student health that confirmed my symptoms were serious. My doctor took one look at my arms saying “wow, you do have edema!” before she pressed into my forearm with her thumb and forefinger. There was a deep depression in the skin that lasted nearly five minutes. That was it, my assessment was over and she directly me urgently to Wellington City Hospital. Four hours of chest x rays, blood tests and crack pot theories of 3rd world strep infections later I was prescribed furosemide and sent home. The diuretic literally ‘popped the balloon’ and over the next week I had a cascade of needles and people prodding at me vying for a diagnosis.
After a kidney biopsy Minimal Change Disease was diagnosed and steroids (prednisone) was prescribed. After a few months of very little change in symptoms the kidney tissue was re biopsied to confirm the correct diagnosis of FSGS – focal segmental glomerulosclerosis, a fancy way of saying you have scars on your kidneys. So what caused all this mess? Who fucking knows. Until I had protein turning my piss bubbly I was an otherwise normal and healthy girl. The theory goes that perhaps a bacteria got into my kidneys so my immune system started to attack the kidney and managed to damage it (scar it) in the process. Now my immune system won’t quit attacking the area meaning that when blood is filtered through my kidneys, because of the scarring, protein escapes the blood and spills out into urine (proteinuria). Needless to say I was pissed off (no pun intended), worried and resented my immune system for getting me into this mess in the first place. The steroids didn’t help either and I obsessed over there side effects which for me were ‘classic case’. I got the big ‘moon face’ and weirdly lost my collar bones to a heavy layer of fat, I gained 8 kilos. I waited for buffalo hump to appear on my back but it fortunately never happened.
I wish somebody said it would all be temporary at the time. I think that might of helped. Slowly after a year the stupid pills started to make a little difference. I was directed to taper off and start something else call cyclosporine. It’s a drug typically associated with transplant patients as it blocks your immune system from rejecting organs. Same deal for me but the idea is it blocks my immune system from attacking my kidneys. I’m still on cyclosporine and unlike the prednisone the side effects aren’t too bad at all. I have to take them morning and evening and because they are an emulsion medication they are a right pain in the ass to hike with. They come in blister packs that they can’t be removed from or else the exposure makes them inactive. They are also easily affected by humidity and dampness so a shit combination for hiking in New Zealand. Earlier this year on the Milford track we hiked mostly in rain and one evening I popped a cyclosporine out of its blister to find the capsule had gone soft and bendy and had started to dissolve in the conditions. Despite the faff I would eat up cyclosporine anyday over prednisone.
I know that the full recovery rate for people with FSGS is less than 5%
The worst possible outcome for me is that one day I could end up on dialysis. Being hooked up to a machine for hours a day sometimes 2-3 times a week is a scary and surreal thought. I can’t stay on cyclosporine forever as its toxic long term and realistically I know that the full recovery rate for people with FSGS is less than 5%. In hindsight though my experience with Kidney disease has been positive. I would even go as far to say that It was a good thing to get Kidney disease. My experience is a tough, unfair but an awakening life lesson. It taught me that my body is an incredible vehicle that I need to use before it’s too late. This thought is a far cry from my attitude in the early days of FSGS. Immediately after I was diagnosed I lost complete faith in my body. I was so angry that a healthy person like me just gets random kidney disease out of nowhere. For a time I became a bit precious about everything and I didn’t do a lot of hiking after that trip to Kaweka. Initially I was so tired all the time It took a while to do anything physical. My body had gone on hiatus and so had my mind. But slowly, particularly after I got off that shitty prednisone, and got the body back that I was physically used to, I started really pushing my boundaries. I made it a goal to complete all 8 Great Walks of which so far I have done 7. I discovered that nature was a wonderful medicine for my body and my soul. I have stopped ignoring an affinity for rivers and native flora and fauna and explore whenever possible. I started pushing my body and challenging it in ways I hadn’t even thought of before my diagnosis. Snorkelling, hiking and trying to run – I find running incredibly hard and of course our 3,000 kilometer hike we have planned in November on the Te Araroa. Through all this I’ve restored my faith back into my body and know its doing its best. All I can do now is enjoy it to it’s absolute limit.