Ok, so I haven't done much these past few days. Had a few coffees, I guess that counts??? Been using my mug to make my Kaitaccino every morning, and today I bought a blue mug to see if the Sharpie trick works on it too, just got to find something gorgeous to draw on it. I've mostly just been at work during the day, and veging out on the couch in the evenings - I've been wrecked!! Going to take a little while to get back to it properly.
Having said that, I have actually booked in a yoga class on Monday! (item 17) I downloaded a free 2-week pass to the gym off some website somewhere, and then thought that maybe it might be too soon for exercise, but then the lady from the gym rang me to confirm, and I chickened out and booked it in! So we'll see how it goes - they don't do group class passes, only memberships for the whole gym which I don't want - so if I end up loving it, I'll have to find another place to go to do it!!
So the theme of today's post is
what actually happened. In my own words....
{I got up to the part when we went to emergency and realised how long it had gotten, so decided to break it up into parts. This one is just the week and a half before I went to hospital!! So I'm thinking part 2 be my time in GV and my trip to Melbourne, part 3 be my time in Melbourne and part 4 be my recovery and the start of my remission}
I'd like to begin by saying that this wasn't the first time I've had Nephrotic Syndrome & Minimal Change Disease. This was a relapse. I started off in October 2010 with my first episode, but it was much different to this time. I was nowhere near as sick!! I carried most of my fluid in my feet, ankles and legs, and I only spent a week in hospital - and only in Shepparton. No albumin transfusions. It was still scary though - and there was the added fear of not knowing what it was that I had. When it first came along, we didn't know if it was something I'd recover from, or if I would progress to end-stage renal failure, dialysis, transplant... there were some scary thoughts running through my mind, wondering if I'd even make it to my 30's - I knew you don't want to mess with your kidneys.
I ended up having a biopsy on my kidney to work out that it was the MCD. I don't recommend getting one of those unless you really have to!! As far as pain goes, it didn't "hurt" (except for the local anaesthetic). It was the sensation coming from a needle to the kidney that did it for me - the most un-natural feeling! I still shudder at the thought, and my blood pressure dropped quite quickly at the time!
But I went into remission, and it was a very quick and easy process. I managed to do it with minimal medication/treatment - I was only on steroids for 2 days (compared with >3 months for this episode). The nephrologist wasn't expecting it! It was a huge relief, and I felt a great wave of sheer luck. It was all over (for the time being), there were no more hassles, no more medications, no D-word or T-word (dialysis/transplant). I felt like I was walking on a cloud for about a week, my whole life just felt so surreal. The colours seemed brighter. I vowed to make the most of my life and enjoy life more - much as I have now - but in time, I guess I just started taking things for granted again.
It had been about 18 months that I spent in remission, whereas my research tells me most relapses occur within 6 months. My nephrologist said to me that the MCD/Nephrotic Syndrome could come back, or it could not - and there was no way we would know until if/when it did relapse. At first, I was so careful. I went into remission in November, and then we had summer - every hot day, my feet would swell just that tiny bit from the heat, and I'd be rushing off to the toilet to test for protein!! Even if my feet didn't look quite right, I'd check. Nobody else could see that slight swelling in my ankles that I was worried about. The tests came back negative every time. Blood tests were always perfect. You wouldn't even know that I'd had the MCD.
I did a lot in my remission - finished my Uni degree, moved up to Shepparton properly (instead of just coming in the holidays), got my job working with people with chronic illnesses, stayed in a perfectly happy relationship with Lachie... life was really good. I was really happy with how things were going. Even the type 1 diabetes wasn't giving me too much hassle, and my HbA1c (measure of long-term blood sugar control) was the best it had been for a couple of years.
And then I got the. Worst. Cold. I'd. Ever. Had. In. My. Twenty. Three. Years. Of. Existence.
Looking back - it wasn't "just a cold". No way, Jose. How could something so minor leave me so decimated?? I could barely lift my head, let alone get out of bed. And that was when I was awake - which wasn't often at all. Looking back, it was absolute hell!
I had no appetite at all, it was the strangest feeling I'd ever had. I'd look at food, and just could not comprehend that I was meant to put it in my mouth. I knew it was an orange, or a tub of yoghurt. But there was no urge to put it in my mouth, chew and swallow. It's an urge that you don't notice normally because why should you? You just eat it. But there is something in your head that determines whether you eat something (like cake, or a juicy steak, or your favourite cream cheese/sweet chilli/avocado/salad sandwich) or not eat something (like poo, or a piece of paper, or your spoon). And mine was switched off in that I had no desire to eat anything, no concept of hunger or appetite. As a qualified dietitian, this really hurt me.
There was also the sleepwalking - this is what scared me the most, and I don't know how it could have been linked to the MCD. The first time it happened, I woke up on our bean bag eating chocolate. I put it down to a low blood sugar. Then there was the Saturday while Lachie was off at footy. In retrospect, I shouldn't have been home alone. I woke up in the shower, with my insulin pump missing. I went to bed (because I wasn't capable of doing much else) and called Lachie in some sort of rambling incoherent panic, telling him to come home ASAP. He made the trip home, which took him about an hour, and he gets home to find both the front and back doors wide open (I have no idea), chillis from our chilli plant all over the backyard, my pump on the dining room table, not damaged much to our relief, and me under the doona, asleep and shivering with cold. By the time I regained my sense of where I was, who I was etc, I was terrified. I'd never experienced anything like that in my life, not even from the trippy low sugars you get sometimes. I was convinced there was more to it than that, and to this day I have no idea what it was. Some sort of deranged level of soemthing in my blood? Albumin dropping at a rapid rate? Maybe. I don't know.
The funny thing was, my feet didn't really swell that much - not like the first episode. They did a little bit I guess, but it was far less obvious. I only really had a puffy face - like I'd been stung by a bee, but I put that down to bad sinusitis. My nose was chockers. It took me a while to work out what was actually going on - and that really frustrated me when I was in hospital. How could I have been so blind to what was going on? I know it had crossed my mind a few times, but I'd never done anything about it because I'd spent the last 18 months so paranoid that I'd have a relapse, that I had to stop myself from questioning my kidneys all day. And I was lulled into a false sense of security that surely, after all this time, it wouldn't come back? Would it?
I ended up getting Lachie to take me to the doctors, who did blood tests and tried to blame everything on my diabetes. But he did take bloods. I only got worse since then, and on that Friday Lachie came home from work for lunch and suggested that it would be best if we went to hospital - I just couldn't care for myself, and Lachie couldn't leave me on my own. We went back to the doctors, and saw a better one this time, who looked at the bloods and confirmed I was definitely having a relapse - my albumin level was already 15.
We went to Emergency, and it was surreal - but for a different reason to my remission surreal-ness. It was like an admission of defeat, that suddenly my bubble got burst and I was no longer invincible. I didn't beat the MCD, it was just waiting for a chance to knock me off my feet again. I wasn't one of the lucky ones who just have it as a once-off, there was a relapse - and who's to say that once I got through this one, that there wouldn't be another one. And another one. I was in tears in the car heading there, and needed a few moments to compose myself before we went in. I just felt so crushed by the gravity of what was going on - apart from all that, it was no longer in my head. It was confirmed, in black and white bolded numbers on the doctor's computer. Urea and creatinine sky-high, albumin getting close to the critical level of 13 (spoiler alert - they tested again in ED, and it was 13 when I went in to hospital). And there was the fear, that I knew what was about to happen and what I was about to go through. I knew that I would get worse before I got better. How much worse, I didn't know at the time. I knew that there would be discomfort, that I wouldn't be comfortable in my own body. I knew there would be lots of needles and infusions and blood tests, and that by the time I got out I'd look like a heroin addict with my scarred arms. I knew that I wasn't going there for fun.
But I accepted that I needed to go in there so I could go into remission again, and so I marched (aka waddled) through the doors of the Emergency department with my head held as high as I could manage, to get myself the help I needed and get myself back into remission...
