There's surprisingly little on the internets about minimal change disease and nephrotic syndrome in adults, from a patient perspective. Less still about what happens to your body. I'm writing this to explain, practically, realistically and hopefully with a sense of perspective, what happened to me - for anyone else diagnosed with it.  Apologies friends, who may know all of the below, and Tom, who's heard it all twice, thrice and more :) I rarely use my blog, and this is the next best place.  The photos above are from 20 May and 12 June.  What a difference a shitload of steroids makes.  GP visit - 8 May, to discuss my slightly swollen feet and ankles, which I put down to a new Power Plate exercise at the gym. He thought I seemed very confident that's what the problem was, and gave me some very low dose diuretics, and off I went, clutching my prescription. Symptoms - 8 May - 14 May, the swelling in my feet (actually first noticed 25 April), worsened, from my feet, up my ankles, then up my legs, tummy, lower back and finally, face and around my eyes, especially in the mornings.  

What kind of swelling? So bad it was impossible to bend at the knees, I had to roll sideways out of bed, couldn't bend backwards, had numb toes, pins and needles. Battery Operated Christmas Lights TorontoOld scars bulged and re-appeared - I guess due to the swollen cell changes. Ak 47 T Shirt AmazonKind of amusingly, if I slept on my side, one side would be bigger, and I had to wait for gravity to pull all the fluid downwards.  Cheap Cavalier King Charles Spaniel Puppies For Sale In OhioIn total, I put on 15kg of water in about three/four weeks. It's called 'pitting edema', and feels and looks like memory foam, when you press the skin in. Nausea and bloating (no room for things to move around). Couldn't eat (because of the big bloat).

Breathlessness (all that new weight). Foamy wee, if it happened at all. Kind of a tinnitus / spacey feeling. GP again, hospital, diagnostic tests - 14 May, initially with the same GP for an emergency appointment after waking up just knowing something was really quite wrong. He ran a urine test on seeing my alarming weight change, then packed me off to the truly wonderful Royal London Hospital for blood tests, consultation, medical history and so on. Within an hour or two of me being there, they pretty confidently said that they believed it to be minimal change disease, which is one of the most common causes of nephrotic syndrome (when large amounts of protein leak into the urine). Update: oh, I also had an ultrasound to rule out changes identifiable by eye, eg, lumps, and to check that both kidneys were present and correct. It's common in children, less common in adults. They don't know what causes it, it's often idiopathic. Four theories are: use of ibuprofen (in the past I've taken maybe 800mg a month), or a cold / sore throat (strep) virus, that doesn't go and instead, moves to the kidneys, or an allergy or an insect bite / sting.

No family history in my case.  I learn it's not life-threatening and I'm not likely to get whipped in for a transplant, and nor is this likely to happen in the long-term.  Most people should have less than 20mg of protein in their urine. It's no wonder I went pear-shaped.  Kidney (renal) biopsy - 19 May, back to the hospital at 7.30am as a day in-patient for a pretty yukky kidney biopsy.  This is done under local anaesthetic because you need to do things when asked, and they'll generally pick the left kidney (if you've got two normal-sized ones), to avoid the one by your liver.  It was done right there on the small ward, with a portable ultrasound, some anaesthetic and a loooong needle. You lie on your front, they go in from the back. Your kidneys move from side-to-side when you breathe, so you hold your breath, then breathe in and hold, when told, to take the sample (at least, that's how I understood it). They took two cores, about half as long and wide as a matchstick - here's mine - to make sure they got a broad selection of glomeruli for the electron microscopy.

No need for stitches.  Then, you lie flat on your back for six hours, to kind of seal things up. It just feels odd afterwards - you can feel where the kidney has 'popped'. I was told that I'd feel like I'd been kicked in the back, but barely any pain at all - more general nervousness at popping myself open and dying in a pool of blood in a corner of an old Victorian hospital. You have to wee whilst at the hospital, to make sure there's no serious bleeding. I doubt they'd let you home without this check, so drink the tea, even if you are horizontal most of the day. Went home around 10pm, with a big bag o' drugs and an order to not lift anything heavy for two weeks, being particularly careful for the first 48 hours. 20 May - started treatment. Per day: -- 60mg prednisolone (to stop the protein leak from my kidneys)-- 80mg furosemide (or frusemide, a diuretic, to make me wee like a racehorse. I took 160mg some days, as it didn't really work to start with - previously okayed with the consultant).

-- Calcichew D3 Forte (calcium, the steroids thin your bones)-- 20mg omeprazole, a kind of stomach liner, as the steroids can irritate your stomach lining. -- 10mg atorvastatin, for my temporarily sky-high cholesterol levels, as a result of the changes in my blood / the protein leak / steroids - I don't know which.  I chose to stop the furosemide as soon as my weight was back to normal. 24 May - consultant. More weeing in pots, and a good chance to chat to the consultant. There's a possibility he thinks, that I may have FSGS, which is a similar condition. Either way, it doesn't matter now, as the initial treatment is the same. His wise words: be patient. He says the prednisolone is generally 100% effective, then quickly revises this down a bit :) 25 May - 1 June. To the middle of France! The land that fashion forgot! I could be huge and wear maxi-dresses to my heart's content. Of the litany of steroid side-effects, I had some weird flappy whites-of-eye thing going on (could've been cholesterol, I'm not sure), chronic sleeplessness (curiously not irritating, I just lay there thinking, oh well, here I am awake again), very buzzy in the day, never tired, ever.

I can see how they can be addictive.  I scratched myself on a thistle or something, and the wound watered, gently and consistently, for about 3 days. Better than a tap on the knee - ba-dum tish. (There's a photo of this in this set.) Pretty hard to walk very far, just too breathless and uncomfortable. Hard to eat much too, no room, with all that bloating.  I had some wine - maybe up to 175ml a day. The consultant said it would be OK to have one or two glasses, and I omitted to ask if this was per day, or per week... As I understand it, it's best not to mix steroids and alcohol as it can irritate your stomach lining. I imagine that will be very different in different people, particularly if you have more mental / physical side-effects from the drug, than I had / have. (So don't drink alcohol just because I chose to.) Round about 30/31 May - whilst trying to walk around Paris - terrible, and I mean really horrible, leg pains - behind my knees, in my calves and ankles. I guess all the water was starting to shift around.

My legs felt very 'brittle', ready to snap. 1 June - 4 June - the week of weeing. About two weeks into the steroid treatment, and everything suddenly started moving. I guess the protein leak was stopping, and I was losing up to 2.5kg of fluid a day. That's a bit too much really, and 1kg a day is what you're supposed to aim for. Back to more or less normal size in about a week. 7 June - consultant. More weeing in pots. Which means the steroids have stopped the leak - hurrah! Now, we start to taper the steroids - very slowly, about 10mg each time. I need to see the consultant less during this time, and more later - as the chance of relapse is higher as the prednisolone drops. I should never get so big again, as all the bio-chemistry should clock a relapse well before it becomes symptomatic. You'd never know to look at me. The biopsy 'scar' looks like a little red dot. The thistle scratch has healed, but in an unusual way, and very slowly. My face has changed shape (hamster-cheeks, from the steroids).