The great repost, part four

I promise, after this entry, there's one big one I want to make, and then that's it. I'll be straight back on books.

So I left the story last as we pulled up to the hospital, didn't I? There's no point making an alias for the hospital, since it's the only specialist place in Southern England for TTP. They have 8 aepheresis machines (Ant, Dec, Beckham, Baby, Posh, Sporty, Scary, Ginger. But they're currently saving up to replace them) and the two lead researchers for TTP in the country. So we got to UCLH within half an hour, and I was wheeled up to oncology and haematology.

Perhaps it was niave of me, but I didn't expect to have to be so high up in a hospital. I know it was London, and space is limited, but it's not like New York, I thought maybe I'd be fifth floor, tops. Not 13th floor.

Anyway, one of the doctors came to talk to me before anything else, and explained about what I had. And when I asked what it was called - because I hadn't heard until this point, I just knew I was 'going on a machine, like a washing machine, which spins fast and cleans out the blood'. She didn't want to tell me, said it was a long and complicated name, but she said it anyway. And then I said 'oh, that was on an episode of scrubs. Two guys had it and one of them died.' Not the thing to say when you're borderline critical, apparently (and if you're wondering, season 2, episode 9, when JD and Cox have that competition on who's a better doctor over two TTP patients. JD can't say Thrombotic Thrombocytopenic Purpura). I'd gotten to the hospital by the way, with 6.7 RBC, 14.2 WBC and 34 platelets. They caught my TTP early.

So anyway, they put a vascath in my femoral line and linked me up to the machine within half an hour of arriving. The operator was German, and they'd given me a lavender sedative to put under my tongue - apart from mouth wash to keep my mouth wet and toothpaste when I brushed my teeth, that was the first thing to enter my mouth in days - and I started feeling really weird, like I had to get off the bed and run about, and I felt myself start babbling. So the guy didn't notice at first when I was like 'I feel all jittery!' and didn't understand what 'jittery' meant, so at first he thought I was completely losing it. But once my mum managed to explain, he started fidling with the machine. Apparently a lack of calcium can cause that sort of fit? I kept saying I was hot too, and asked for them to open a window (you can't do that on the 13th floor ...) they turned down the thermostat into the minus numbers. I don't do that, I like my warmth.

Anyway, through that first session, which used about 35 pints of platelets and took about three, four hours, they kept waking me up to ask me questions. Stupid questions, 'what's my name?' 'what's your name?' 'where are we?' 'who's prime minister?' - they were stupid, simple questions, but it was the easiest way for them to check that I wasn't having a stroke. If I wasn't grudgingly accepting that Gordon Brown ran the country, and said John Major or something that made no sense, they'd have further work to do.

I preferred being in London for certain reasons. They were more consistent, there was more of a routine. I had the aepheresis in the morning, and something else in the afternoon. x-rays, a CT scan (they put iodine in the vascath, and told me 'it's going to make you feel you need to wee, give a metallic taste in your mouth, and make your veins feel like they're on fire'. All three happened, but weren't unpleasant, exactly. The catheter helped, lol). Because it was an oncology ward, there were certain perks - my own room for a start, to reduce infections (and so I could avoid food, since I wasn't allowed any), and because there's so much money in cancer research, there was a sofa bed in my room for my mum to stay (so the RMHC is a big thing for me. If at 23 I appreciated my mum being so close, being 6 it must be even more incredible) and visiting hours were any time, for any age - so long as my platelets hit 150. There were women who came around too, every few days, offering therapies like reflexology and aromatherapy. I had reflexology and reiki during my stay. The staff were friendly and I could ask them anything, and they were so nice in response (like 'how can you stand sticking needles in patients?' 'if it's the easiest way to get a patient better, that's how I can stand it' etc etc ... that conversation came around the time of day they gave me something called fragmens, which they gave to try to control the clots. I had some in my local hospital, but they injected my stomach. UCLH injected my arm, like I asked for). It'll sound ridiculous, but I fell in love with my cleaner. She was so content, she hummed every day, whether she was dusting or on the tea round. I envied that happiness in work, no matter what the work is.

But there were bad things too. The first time I went outside, when my platelets hit 150, I was petrified. Someone was smoking outside the main centre they did the plasmapheresis, and I held my breath, afraid it'd make me sicker. They gave me a neck vascath after a few days, and I was scared of that too, so scared I threw up again. I begged to be put asleep while they put it in, but they said it'd take ten minutes and there'd be no point. I got wheeled into the room they do the procedure, and everyone's in lead jackets - they gave one to mum too. They put a blue square over my face, with the hole in the middle over my neck. They put local anaesthetic on the area but it didn't help much. I'd take pregnancy a thousand times over another neck vascath. I was so out of it when I got wheeled back to my room, my stepsister had visited and it took two different antibiotics and a nebuliser to get me to say hi to her. Or more accurately 'sorry'.

The same day, later on, there were 12 different doctors, consultants and nurses in my room. One was doing observations, and the others were all talking amongst themselves, or introducing themselves to me like 'Hi, I'm Mark from ITU, I've heard a lot about you' - I know what ITU is, that didn't fill me with hope. They went quiet as one doctor talked a bit more about TTP, what it was, how they were going to treat it ... and then they took mum out the room, with my dad who was over, and when they came back in, mum was crying. She's so transparent sometimes, I could tell what they'd said. The first talk, on the first day, we were told younger TTP patients could do really well, then crash and have to go from scratch. I wasn't so niave not to notice this was the day they expected me to take a turn. And that night, on my nebuliser, I could feel myself getting tired - and not just because I had to be on the nebuliser until it ran out, and it either smelt herbal and disgusting or menthol and disgusting. I was exhausted. And I thought 'I haven't got the energy to take another breath' and this little voice in the back of my head was like 'and what's going to happen when you breath out? You're going to breath in again, you retard' - I don't know where I'd be if it weren't for that little voice. The doctors were surprised to see me in the same bed on the same ward the next morning at any rate.

I got to see the boy twice while I was in there. He came up on the friday, and I was so shocked to see him. He'd been a baby in his sleepsuit and baby walker when I'd left. He was this gigantic toddler when he came to see me. It felt like I'd missed more than 10 days of him. I was on the machines at the time, and he wouldn't look at me because of the tubes, the blood. I don't blame him, I hated that sort of thing. I was still on oxygen tanks at that point too (had been since the day after I got admitted into my local hospital), so I had those tubes up my nose, and they always freaked me out when my nan had them. But he sat on my bed and patted my legs every so often, just to make sure I was really there.

He visited on his birthday too. My younger sister had an appointment at another London hospital that day, and she went with my parents, and my other sister and my brother came with boy to my hospital, and when Claire was finished, they were all coming over too. My older sister, Cara, was amazing, she bought the boy a giant 1 balloon and a birthday hat, and they brought strawberries and a chocolate cake for him. We went to Regents park, which was a few minutes away by taxi, but after walking to the playpark from the park gates, I was exhausted, so I watched as he went on the slide (and cried) and those bouncers and then the swings. We saved the strawberries and cake for when everyone was there. But I felt so bad that this was his first birthday, cake in a hospital wing. But at least I was there, and at least I could see him (they had actually said, the day before 'we know tomorrow's a special day, so would you want to go home for a few hours tomorrow?' and I said, pretty honestly 'if I went home, I don't know if I'd make it back' and I knew it was important I stayed, so we went with him visiting London). I had to see the people leading the research though, and they were on holiday during most of my stay. The first day they could see me was his birthday.

They let me go the next day, and the tube was awful. I was tired just walking to the underground, but the trains were full and we had to stand until Liverpool Street. I knew I'd been right about not visiting home the day before. We got back and there were 'welcome home mummy' signs everywhere and boy hugged me, and one of his godfathers visited that afternoon too, but I didn't feel I could say much, or do much. When boy needed a nappy change, I couldn't get the energy to help out.

I know none of this is consistent, but as I've said before, my memory is patchy. It's a random collection of memories because that's how it's amalgamated. Like, how Rebecca always used to ask if I needed the loo, then put me on the machine, and half hour later, I'd always need to go. And how Taffy kept me up most of the night making me over-sweet tea because she was genuinely worried that my blood sugars were 3.9, when the normal range is 4-7. When the gastroenterologist said I could finally drink, and then eat. Watching the bill when they removed the femoral vascath. Vivian telling me chocolate was the best thing I could eat, for sugar and potassium, and not to worry about my dentist's reaction. When I went outside to the local sainsbury's for 5 minutes because they said I could go out. When they started giving physio because the x-rays showed both my lungs had half-collapsed. When I said I had a headache over my right eye and they started looking into my eyes at obs, and giving me further physio at obs, and asking more dumb-but-necessary questions (blood clots, headaches, and the slurred speech I had that I didn't actually hear = start of a stroke). When my best friends visited before going to see Taking Back Sunday at the Astoria down the road. When I got the post for a zoo trip I'd been planning the day before boy's birthday, then having to cancel it all. When the nurses said we had wireless in my room, did we want to bring a laptop from home? Being allowed to use mobiles too. This one light that seemed to be solar-powered which stayed on all night. Seeing Wembley stadium and the BT tower from my floor. When my neck wound started bleeding and they kept adding more and more plasters to it to add pressure to stop it bleeding, and me thinking 'God, I don't have any blood, why's what I do have left trying to leave?' and when the vascath came out, it didn't bleed at all. Getting to read again, and having mum's friend/boy's godmother's mum lend me some books when boy's godmum sent me sweets and a me2you bear.

I'm sure I'll remember more some other time. I forgot about the oxygen mask until I started writing, for instance. But there was so much in those ten days. I think I've had almost every procedure a hospital can throw at you, in the space of a fortnight. The aftermath will be in my next post.

The Great Repost, part one

Forgive me a moment, or a series of moments, to talk about something personal, rather than the world of literacy. It's the thing I tried to post a few weeks ago, which kept going wrong. It's going to take a while, because I'm not sure how much I can type and post in here. And it upsets me a lot, and it takes ages to type as is. I'll write these in themes too, and hopefully my reasons why will become apparent.

This first post will be about the bare facts and figures. The next postings will be my personal experiences, pre-, during, and post-. I'm mainly doing this to be cathartic, but also to clear up what I was talking about when I posted about Stefenie Meyer. A justification for my reaction, if you will.

For a full title, I suffered from Thrombotic Thrombocytopenic Purpura caused by pancreatitic gallstones. It's three different things at once, a chain reaction, but the last part of the chain can cause the first. Does that make sense? The ultimate vicious circle. Forgive me now for anything I spell incorrectly, I'm going to try and show off with my basic medical know-how. I'll break it down into its component parts.

First of all, gallstones. I was told medical staff look for 'the four F's' in gallstone patients (Fat, Fair, Fertile, Forty. And since 60% of gallstone sufferers are wormen, I consider it the five F's with Female). If I were a blonde, middle-aged woman when having my son, and a few stone heavier, I would have been the prime candidate. Instead, I was size 10-12 before having my son (who I had at 22), and am now size 12-14, and a brunette. So one established characteristic (even a year after pregnancy, you're incredibly fertile).

However, there are other things that can trigger gallstones. Eating disorders (and I went through a period in university where I ate a bowl of porridge a day because I couldn't afford anything else), pregnancy, the contraceptive pill, sudden increase in animal fats (I've been vegetarian since the age of 11, I gave up during pregnancy ... though looking back I was showing symptoms before starting university, so who knows?) as well as the four F's.

You can live with gallstones by the way. The only consider removal when the stone becomes too large, or if you have many, and one slips into a duct between the gall bladder and the bowel or the pancreas. That can turn your gall bladder septic, and cause complications like pancreatitis. Then you'll usually be given a laparoscopic cholescystectomy (or key hole surgery. They rarely open people all the way up any more, there's like a 10% chance they'll need to). They perform around 500,000 lap chol's in the US per year.

Gallstones are the most common cause for women of a certain age who get pancreatitis. I was not that age. The second most common cause, and the most common in people in their early/mid twenties, is alcoholism. As far as I'm aware, pancreatitis is usually caused by an inhabitant. It's not the same as diabetes, it's shorter lived but just as potent. It has a survival rate of 80% and most hospital treatment involves 'nil by mouth' (no eating, drinking, or taking medication orally. Intravenous city!) When the pancreas has reduced in size again, and they know the cause, they'll take action then.

Thrombotic Thrombocytopenic Purpura (or, as I'll call it in the rest of this, and all other posts on the subject, TTP) has a survival rate of 80%, should you be properly diagnosed and treatment given within a very short time frame. Without, survival rates are more like 0-5%. So basically, if you get it, you need treatment or you'll die. TTP occurs when the ADAMTS-13 enzyme is inhibited, normally by an anti-body which sits on the ADAMTS-13. Sometimes there is no antibody, and the inhibition is from something else, like AIDS/HIV virus, combine contraceptive pill, interferon, quinnine (malaria treatment, also found in tonic water and irn bru). The ADAMTS-13 is meant to control certain things in the bloodstream, hormones and such. One of its jobs is to break down a substance called the Von Willebrand Factor (I mentioned it before, in my Stefenie Meyer post).

The Von Willebrand Factor is this long strand, like a protein, that is used to knit together cuts, scrapes and bruises. Like the glue pasting white blood cells and platelets together. In it's organic form, it's extremely sticky. The ADAMTS-13 basically stops it from causing blood clots, by reducing it into a managable form. With the ADAMTS-13 inhibited, the Von Willebrand Factor remains long and sticky, and of course causes blood clots. It normally causes kindey failure, multiple organ failure, or strokes, if you don't bleed to death first. NB-It only attracts white blood cells and platelets. They build up, and white blood cells come to the site like they do to any infection or cut or bruise, to heal. And when it gets big enough, the red blood cells get shredded up. On a blood test, the red blood cells and platelets are reduced in number, white blood cells have increased. Leukaemia blood tests show the same (except for the fact with leukaemia, it's the white blood cells thinking there's an infection there isn't and turning on the blood as a result).

They analyse TTP in two different ways, you either have congenital TTP (you're born with it, or discover it during pregnancy, and suffer it frequently from there on in) or acquired TTP (caused by the antibody, or another source. Those with the antibody have a 50% chance of having TTP repeat, other sufferers have a reduced likelihood). TTP affects 1-4 in a million. Based on that figure, there are 60-240 TTP sufferers in the UK. 15 of those people have congenital ttp. 80% have the antibody. That leaves roughly 15% of TTP sufferers in the UK at least, to have another factor cause their TTP. From what I know of TTP from pancreatitic gallstones, in the past 5 years there have been 7/8 other patients with pancreatitic TTP, and only one of them had gallstones. 5 of them had the antibody present anyway. My branch of TTP is therefore incredibly rare.

TTP affects people more in their 30's/40's, and women more than men. A typical person has a count of 12-16 RBC, 8-10WBC and 150-400 platelets in a blood sample. I've heard of TTP patients with no platelets, but most have maybe 7/8.

Treatment for TTP is usually using an aphaeresis machine, this machine that looks a little like a 1950's tape recorder with hooks everywhere, crossed with a washing machine. It has 4 different G-force settings, according to different blood products, and will spin at the required speed, taking in someones blood and seperating blood, adding donated blood products, combining it again,and putting it back into a person's blood stream. These machines can hold around 40 pints of blood product, or as far as I've seen they can. Straight transfusions, from packet to blood stream, feed TTP, rather than curing it, and can speed up the process.

ttpnetwork.org.uk has more information, if anyone was interested in reading. It's probably a lot more cohesive than me. That's about all the facts I can retain and recall, so my next post on the subject will be the start of my experiences. Bear in mind all I've said here, because parts of it will come into play as I talk.