So ... everything that happened post hospital. I'll try to make it as chronological as possible.
Less than a week after I left London, I was meant to go to France for a few days, to Disneyland with my best friends. I'd talked to the doctors about whether I could still go and at first they were like 'I don't think so' and eventually one of them had said 'if you can explain it all in French, then sure you can go'. Since my french is limited and I can say 'je mal au ...' and then not know the French for 'blood' I obviously couldn't go. I'd organised it all, we needed my card to get the eurostar tickets, and I'd booked the hotel and park tickets (and my friends needed my ID, though we didn't know that at the time). I emailed the eurostar and the hotel explaining everything, and the hotel were good about it, but the eurostar people were adamant I needed to at least be there to pick up the tickets. A refund at that time was the furthest part of my mind, I didn't know how I could face travelling to pick up the tickets to give to my friends, then turn around and go home. I almost brought my passport with me when I did, but mum and the boy came with me (to restrain me if they needed to). But oh my God, everything that could have gone wrong that day did, the trains were cancelled, we needed to catch buses, I forgot Joanne's birthday present (we were meant to be getting back just before her 23rd), when we got to the station the machine stopped working after printing out one ticket (mine) and they called the IT department but they'd left five minutes before, so we had to wait until the next morning. I started laughing because it was either that or cry hysterically. They said because the ticket that had printed had the reference on, I didn't need to be there in the morning too - that definitely would have been too much to handle.
As it was, I got woken up with a phone call two days later. Since when is it harder to get into an amusement park than a hotel? The people I'd booked the tickets with, through a work deal (which I'm still not entirely sure saved us any money, though it said 10% off) hadn't sent me the email voucher so I had to call them, get the new email, and forward that with a scan of my passport. I know everyone who went had a great time while they were there, but it felt like the whole thing was cursed (especially as I'd lamented on a website that I hadn't gone and someone missed the point that I'd done all that work and spent all that money for it and had a go at me because she hadn't gone too). Instead, while my friends were getting hugs from Sulley and joking with Mickey Mouse as only we could do; I was in my local hospital getting another blood test to make sure the treatment was initially successful. The nurse couldn't get my veins in my arm to come up, and the only protuding vein she could see was inside my wrist. I started crying - I was so sick of needles and blood tests by that point - and the nurse was going to mum 'is she actually crying?' (no shit, Sherlock). Instead, she took the sample from the back of my hand, where the clot was still pretty huge, but there was a vein we could clearly see. I preferred her taking it from there, but I was still kind of a mess as we left hospital.
I was sleeping for ages too. I'd go to bed at 7 or 8, sleep until 10, and still need a 2 hour afternoon nap. It was just under two weeks before I started helping with the boy again (I had to, all my family are teachers so they had to go back to school. I had no help) but it was like before I'd gone into hospital, I still couldn't entertain him properly.
Worse, before I'd gone in, he'd started saying a few words - mill for milk, and mamma, that sort of thing. But he'd stopped talking while I was away. He'd make baby noises, and giggle and stuff, but I've not heard him say 'mill' since. He skipped it when he was learning to talk again, called it by his proper name. He was pretty clingy the first few weeks, and when I had to go for routine check ups, appointments to arrange my gallbladder coming out, he was inconsolable. So was I, really.
I was having speech problems myself. I couldn't understand some of the things people were saying to me - you could ask me how I was and I knew what the individual words meant but as a whole, it lost all meaning. I had to get people to repeat what they were saying a few times before the words fell into place in my head. If I didn't say what I was thinking when I thought it, it was lost. I couldn't remember certain words - say I wanted to get a spoon for boy to have a yogurt, I'd have to mime a spoon action for a few moments to try to trigger the word, or at least give someone the vague idea I knew what I wanted, even if I couldn't remember the word. I'd talk and forget what I was saying halfway through a sentence. People would get my attention and then lose it withing seconds, not because they were boring, I just couldn't function right. I seriously had an msn conversation with Joanne where we were talking and all of a sudden, mid-laugh, I was like 'I can't remember what we're talking about' and Joanne was like 'but it's all right there, just scroll up' - but none of it made sense.
I worked my arse off trying to get back to the old me. I did sudoku a lot - those 81 little numbers were such a big help - and logic problems, criss-crosses, word searches, the whole shebang. I threw myself into my writing, and reading, hoping if I absorbed and expelled enough words, I'd have some form of retention. At first it was my old comforts, Harry Potter, Septimus Heap, Remember Me, and slowly it was other things, different things to pull me out of my comfort zone, to make myself grasp more. I still refused to take phone messages, thought my parents often forgot I had no short term memory, and kept asking me to do laundry, give my siblings reminders.
My stepsister's wedding was a month after I left hospital. The hotel was connected to the reception hall, next to the church. It was gorgeous, but the food was so pretentious. I had lamb the first night, and it was done really rare, I think I ate one piece. And my gallstones were aggreivated and I spent the evening being sick, so much so that my stepbrother, who's a doctor, arranged for me to get some medication they rarely give over the counter. Cara did a great impression of my stomach pain in the local chemist, apparently, to get it. I took it, and ended up sharing mum's bed, rather than sleeping in the room with my sister (my dad slept in my bed that night). If you look at wedding photo's even now, I look really off. Noah fell asleep at the reception, after dinner, so I took him to bed, where he woke up. Everyone had left us, thinking I'd sleep too, and I wore myself out trying to get him back off to sleep, so I took him back down to the party, and he fell asleep again in minutes. I knew it wasn't his fault, but it didn't seem fair - I couldn't eat much of the wedding breakfast either, I missed Faith and Jack cutting their cake, their first dance ... everyone was telling me stories the next morning (like Cara's husband throwing his back out lifting Cara's godmother's husband to Time Of Our Lives, or Cara and Claire stealing all the buffet and wedding cake) - I wanted to be there, not hear it secondhand. I was sick of being sick, sick of missing out. But thank goodness for boy - he'd been slamming this mini pot of jam on the table, trying to get the lid off that way, and my dad said 'if you get that lid off in the next five minutes, I'll give you a tenner' - three more slams and it flew across the room. He still owes boy that money. As a result of the weekend though, I spent the next few weeks living exclusively on noodles, soup and steamed chicken breast. I wouldn't have more than 20g fat a day (less than a third GDA for a female)
Anyway, I had hospital appointments every few weeks, for blood tests at UCLH, for haematology and gastroenterology appointments at my local hospital. I was so sick of seeing hospitals. They explained about my chances of getting TTP again (1 in 2 with my gallbladder still in, 1 in 50,000 if it's removed), talked about how aftercare would pan out, asked how I was feeling etc etc. I wasn't scared of having my gallbladder out, though everyone thought I was - I was scared I'd take a week in hospital to recover, of not having boy that long. I was scared if I didn't, I'd get TTP again and die this time. Having one tiny routine operation was a small price to pay. I dreamed of going for weeks without being sick.
I was feeling pretty okay by the time the operation came around - far more alert, I could remember more, I was doing more - almost like once I'd gone the 6 weeks recovery period they recommend after the operation, I'd be working again. I got admitted into the Joint Replacement ward before my operation, since they were short of beds, and the dumbasses having their knees replaced kept asking me what I was getting replaced, wasn't I too young? They were so nosy, my pre-op preparation was different to theirs, so they tried to undermine my already low confidence by saying if I hadn't done what they'd needed to do, I wouldn't be operated on. I was taken down to theatre 2 hours before I thought I'd been scheduled, since they just needed to wait for the haematology team (who were there just in case I haemorraged. Special precaution under the circumstances). When they fitted me with the general anaesthetic, the anaethnatist asked if I was nervous, but he didn't look like he believed me when I said no, just happy that in a weeks time, I'd actually be able to eat Christmas dinner. I stared at a winnie-the-pooh painting as I dropped off.
And when I woke up, my shoulders ached (they tilt the operating table so your head is 45 degrees from the floor, then fill you with CO2 so they can navigate the keyhole equipment around your organs more easily. It was a leftover sensation from the CO2) but otherwise, it was successful, no nicks or complications to make them create a bigger opening - the first good news for the last 4 months. When I got back to Joint Replacement, I was drifting in and out of sleep for a good few hours, but it was the first time in a while it felt truly restful. All the bile that had built up in my liver behind the gallstones came out at one point, but instead of being gross, it was really funny - the other women were still annoying me, and they freaked out at this dark green fountain spewing forth, but the nurses gave me one of those cardboard bedpans and offered me toast - which I had with marmalade, though I hate that stuff normally. But it was amazing, especially when I didn't feel sick afterwards. Those women looked at me like I was insane, like I was eating and drinking too early, but I needed to get rid of all that bile. My stomach felt tender, but it didn't hurt any more.
The only bad point of the operation was that my mind felt like it was back to square one. I'd gotten the boy into nursery for 2 days a week, and that helped me rest up a little, gave me some time and space to get on with getting my mind back again. I read and watched twilight in this time. Hopefully after reading these entries, with all the damage that losing my blood has done to me, everything I've learnt as a consequence, you'll understand why I'm derisive about Stefenie Meyer's writing (whilst enjoying the romantic aspects) ... she has literally no idea what effects losing your blood can do. I doubt Edward really would have had the brains he does, though he seems about as tormented as he should.
I tried to go back to work three months after the operation, but they said they doubted I could have the day shifts I was now asking for. It was a bit like 'come on, I've been so sick, I'm a mum, I'm still tired, I wouldn't cope in a busy shift yet' ... but eventually, when I added a few hours, until the time I was going to bed at night, they started giving me shifts.
And it was hard. I was constantly talking to myself when I was dealing with customers. I was quieter than people were used to when I wasn't, for fear they'd notice I just couldn't talk like I used to. I didn't recognise a lot of people, and the few I did had all been bumped up to management. I was still going through what I had when I'd come out of hospital, where one day I felt almost back to normal, and could say what I wanted to, and had the energy to do everything, but occasionally there were days, and they were becoming less frequent, but there were days where I could barely remember names, could barely walk across the room, and would've been better if I was still off, or just in bed or something. I heard a couple of senior managers talking, and they seemed to think my performance was linked to managers I liked. In some ways, I think that's sort of accurate, since those I got along with could motivate me when I was having an off day, but for the most part it was entirely out of my hands.
That was a year ago, when I got back to work. I talk to myself less when I'm dealing with customers because my memory's better, I don't have to search for words so much (but if you do see me gesturing, or if I repeat something someone's said, that's still me buying time while my brain tries to make what is an obvious connection) and I'm more able to talk to my coworkers like I used to. I've got just about enough energy to tolerate a full working week, and be a single mum, so long as I get a few hours to myself during the week sometime (there's been a lack of that lately, since I've suddenly got all day shifts, but I have a whole day coming up, where boy's in nursery and I'm not at work. I'm so going to enjoy it). But there is a difference, even if I'm the only one to really notice. Or maybe I'm not, and it's just not something to talk about? I get sick quicker than I used to, for longer. If everyone else has a stomach ache, I'm actually sick. Everyone else gets a 2 day cold, I have it for a week - I'm actually benchmarked at the moment for sick time, it lifts in April .. but it's really not my fault. My immune system sucks and my stomach lining's really weak. If there's anything to catch I do. It's just something I'm going to have to work around, I guess.
There is a downside to all this as well. I've been learning to drive, and it's annoying sometimes, because I have the ability but because of what's happened, my reaction times are really poor. My instructor's not taught me emergency breaking yet because apparently I do that too often anyway, to make up for my brain not working right. I'd been filing for life insurance before I got sick, but never heard from the bank filing it after. I've tried someone else since, and gotten refused. I just wanted to make my boy's future secure, but because of one incident, which shouldn't even repeat now I've not got my gallbladder, I've got to rely on ISA's and savings. Which is a croc, since I'd saved almost half a deposit on a house for myself and my son, and most of that money went when I was ill. I've said before to people that I feel on edge if I don't have a certain amount in credit in my account - and it's because I need that backup in case something else went wrong. I can't get any more tattooes or piercings. If I need a tooth removed, my dentist has to refer me to the hospital, because they can't adminster blood products should I haemorrage in his chair.
I have to keep going back to UCLH every six months too. So I'm still considered 'in remission'. When I do, we talk - I still have pretty bad headaches, and they know about my speech problems - and I get offered to be part of research projects, or having my case published in journals. I've given blood for DNA and T-cell research, to see if either present the same deficiency in TTP patients, whatever the trigger. Someone else is doing a computer simulation experiment, to see if TTP patients have lasting brain damage. It's based on reaction times, apparently (so, when I do it, epic fail, obvious brain damage?) - I'll be finding out in a few weeks if they're ready to do that one.
One good thing about the hospital though, is that they have a charity Christmas party every year, so I've met our patrons (Julian Rhind-Tutt and Timothy Spall). They do a bridge walk every October, and I want to do it this year. The treatments are so expensive, I want to give something back as a thank you. Joanne went with me the first year, which was pretty cool (and also, she gives blood routinely, so as well as being one of my best friends, she's kind of a hero of mine).
I haven't got a good way of finishing this off. It's obvious to me now why the first attempt didn't post. It's a pretty big explanation for one little saga though, isn't it?
Showing posts with label Thrombotic Thrombocytopenic Purpura. Show all posts
Showing posts with label Thrombotic Thrombocytopenic Purpura. Show all posts
Monday, 15 March 2010
Saturday, 13 March 2010
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.
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 three
I'm going to have to rush this one, I've got until my work outfit's dry to type.
But it shouldn't take long anyway, because all I want to talk about here is my first hospital, the local one.
Last time, I said that I'd gotten to a&e and hadn't even been there five minutes before I got into the examining room. The first thing they did was give me 3mg of morphine. I was still doubled over, crying. So they gave me another 7 ... and it was wonderful. I'm not huge on recreational drugs, but I get why people do morphine. It made me feel like I could sleep. All the pain ... it didn't go away, but it numbed. Like when Dumbledore gave Harry that potion to help him sleep after he saw Cedric die and Voldemort come back to life, it kept it all at bay and I felt I could just sleep.
But they didn't want me to sleep. They had to ask questions. They asked about my drinking habits, and ran some blood tests (fun talk there. 'How often do you drink?' 'About three or four times a year.' 'How much do you drink?' 'Maybe 5 or 6 drinks?' 'When was your last drink?' ... 'Monday'. I'd treated myself to some apple sourz and lemonade. One tiny glass. And I didn't even finish it.) They said they had to be sure I wasn't some alcoholic before they could entertain the thought it was gallstones.
They said they'd keep me overnight, for observation, and fitted me with a catheter (almost as bad as an examination when pregnant and contracting) and wheeled me onto their assessment ward. Apparently, I got the last bed that night.
This is where time really blurred for me. The following felt like at least a week, but was just short of 4 days. I can't offer a real perspective, I was out of it for a long time.
So at first, I was kept nil by mouth. That means I didn't eat or drink anything, and the antibiotics they had to give me were fitted up with this canular (think that's the right word) in my arm, along with my IV drip. It was a mixed ward, and my bed was next to the central walkway. I didn't sleep much. They took bloods early in the morning, and kept coming back for different blood tests, blood gases, blood cultures ... because my biliruben (blood fats) levels were so high, and my pancreas inflamed, I was having blood sugar tests and only allowed a saline drip, not a glucose one (they gave me glucose once, and someone got yelled at by my bed). First day, I had an ultrasound. The next day (or the one after that?) I had an endoscopy (a tube down my throat, with camera and oincers attached, so they could clear any gallstones blocking any pipes). I passed out during that. I had x-rays too, and the usual blood pressure/temperature checks.
The day of the endoscopy, I got moved to a woman's ward. When I was in the endoscopy room, I came too long enough to throw up blood. When I got back to my room, and came around again, my sister was there for visiting hours, and I did it again. She kept trying to make me laugh, like in the mixed ward, the man opposite me had the shakes and she was like 'is he masturbating?' and when they cleared the catheter bag it was 'are they taking the piss?' but it hurt to laugh. I didn't have the air in me. And I missed my son - visiting hours were for 6 hours of the day, and for over 16s only. He was only 11 months.
I remember sleeping through a fair bit of the day, because I couldn't sleep at night. They kept a few overhead lights on so the nurses could watch us and make notes (the nurse on duty sat in the room at a desk with her files). The light and people in general watching me sleep kept me up.
As the days went on, the doctors took more and more blood. And my arms started to swell. I had a second canular, and a bag of blood, and another bag of platelets, fitted to them. At any one point I had five different baggies going into my arms. I couldn't hold the book I had with me to read it - The Half-Blood Prince, of all things to be reading. Not being able to see my son or read was the worst of it, emotionally.
As it was getting difficult for them to take blood from my arms, they tried my feet. They had no blood. So they went for the femoral line. The second day they did this, the nurse who tried my foot laughed when the needle fell out, when I told her it wouldn't work and I didn't want it because it was unneccesary pain and couldn't they get the doctor to tap my leg vein again? She said she had to show she tried. So, swollen painful foot.
I had to use the commode after a few days, and that made the nurses freak. They started asking about my cycle - I didn't know it, but there was blood everywhere. I couldn't sit on the commode long anyway, I couldn't stop coughing.
The day before my transfer, the head of haematology came to visit me. That should have been the big warning sign there, but it wasn't. I was feeling too sorry for myself. He explained in laments terms why they kept taking my blood, and showed me this slide with a sample of my blood on it. Even now, I can't decide if it was orange or grey. I've decided it was both at once. I needed the laments term though, I couldn't understand much. They weren't telling me much until he came along (this was the day mum overheard the nurses discussing leukaemia by the way). So even though it hurt and I was fed up, I let them keep taking blood, because I trusted him.
But the next day, I was aching to see my boy. I was practicing telling mum I wanted to be discharged come visiting hours. One nurse could see I was tearful, and saw a picture I had of my boy, and started asking questions, and I burst into tears. Another nurse saw and said it'd ruin my stats, and I wanted to scream at her - I didn't care about anything but him right then. But the heamatology expert came again, and explained that there was a treatment for me, and why it was best we start straight away. I couldn't wait to leave the ward I was on so agreed. Then he let it drop I'd be going in an ambulance.
So he called my mum and laughed-at-my-foot asked if I wanted a nurse with me. I was bitter towards her so said no, I didn't want to give her a free ride to london. But then mum said she was coming and she started going 'but she didn't want anyone!' - I wanted to hit her so badly. If I could move off the bed. But then the ambulance and my mum showed up and the Sister on the ward said she had to come, so I got bundled into the ambulance and blue-lighted to London.
And I'll leave it there because I'm now running late.
But it shouldn't take long anyway, because all I want to talk about here is my first hospital, the local one.
Last time, I said that I'd gotten to a&e and hadn't even been there five minutes before I got into the examining room. The first thing they did was give me 3mg of morphine. I was still doubled over, crying. So they gave me another 7 ... and it was wonderful. I'm not huge on recreational drugs, but I get why people do morphine. It made me feel like I could sleep. All the pain ... it didn't go away, but it numbed. Like when Dumbledore gave Harry that potion to help him sleep after he saw Cedric die and Voldemort come back to life, it kept it all at bay and I felt I could just sleep.
But they didn't want me to sleep. They had to ask questions. They asked about my drinking habits, and ran some blood tests (fun talk there. 'How often do you drink?' 'About three or four times a year.' 'How much do you drink?' 'Maybe 5 or 6 drinks?' 'When was your last drink?' ... 'Monday'. I'd treated myself to some apple sourz and lemonade. One tiny glass. And I didn't even finish it.) They said they had to be sure I wasn't some alcoholic before they could entertain the thought it was gallstones.
They said they'd keep me overnight, for observation, and fitted me with a catheter (almost as bad as an examination when pregnant and contracting) and wheeled me onto their assessment ward. Apparently, I got the last bed that night.
This is where time really blurred for me. The following felt like at least a week, but was just short of 4 days. I can't offer a real perspective, I was out of it for a long time.
So at first, I was kept nil by mouth. That means I didn't eat or drink anything, and the antibiotics they had to give me were fitted up with this canular (think that's the right word) in my arm, along with my IV drip. It was a mixed ward, and my bed was next to the central walkway. I didn't sleep much. They took bloods early in the morning, and kept coming back for different blood tests, blood gases, blood cultures ... because my biliruben (blood fats) levels were so high, and my pancreas inflamed, I was having blood sugar tests and only allowed a saline drip, not a glucose one (they gave me glucose once, and someone got yelled at by my bed). First day, I had an ultrasound. The next day (or the one after that?) I had an endoscopy (a tube down my throat, with camera and oincers attached, so they could clear any gallstones blocking any pipes). I passed out during that. I had x-rays too, and the usual blood pressure/temperature checks.
The day of the endoscopy, I got moved to a woman's ward. When I was in the endoscopy room, I came too long enough to throw up blood. When I got back to my room, and came around again, my sister was there for visiting hours, and I did it again. She kept trying to make me laugh, like in the mixed ward, the man opposite me had the shakes and she was like 'is he masturbating?' and when they cleared the catheter bag it was 'are they taking the piss?' but it hurt to laugh. I didn't have the air in me. And I missed my son - visiting hours were for 6 hours of the day, and for over 16s only. He was only 11 months.
I remember sleeping through a fair bit of the day, because I couldn't sleep at night. They kept a few overhead lights on so the nurses could watch us and make notes (the nurse on duty sat in the room at a desk with her files). The light and people in general watching me sleep kept me up.
As the days went on, the doctors took more and more blood. And my arms started to swell. I had a second canular, and a bag of blood, and another bag of platelets, fitted to them. At any one point I had five different baggies going into my arms. I couldn't hold the book I had with me to read it - The Half-Blood Prince, of all things to be reading. Not being able to see my son or read was the worst of it, emotionally.
As it was getting difficult for them to take blood from my arms, they tried my feet. They had no blood. So they went for the femoral line. The second day they did this, the nurse who tried my foot laughed when the needle fell out, when I told her it wouldn't work and I didn't want it because it was unneccesary pain and couldn't they get the doctor to tap my leg vein again? She said she had to show she tried. So, swollen painful foot.
I had to use the commode after a few days, and that made the nurses freak. They started asking about my cycle - I didn't know it, but there was blood everywhere. I couldn't sit on the commode long anyway, I couldn't stop coughing.
The day before my transfer, the head of haematology came to visit me. That should have been the big warning sign there, but it wasn't. I was feeling too sorry for myself. He explained in laments terms why they kept taking my blood, and showed me this slide with a sample of my blood on it. Even now, I can't decide if it was orange or grey. I've decided it was both at once. I needed the laments term though, I couldn't understand much. They weren't telling me much until he came along (this was the day mum overheard the nurses discussing leukaemia by the way). So even though it hurt and I was fed up, I let them keep taking blood, because I trusted him.
But the next day, I was aching to see my boy. I was practicing telling mum I wanted to be discharged come visiting hours. One nurse could see I was tearful, and saw a picture I had of my boy, and started asking questions, and I burst into tears. Another nurse saw and said it'd ruin my stats, and I wanted to scream at her - I didn't care about anything but him right then. But the heamatology expert came again, and explained that there was a treatment for me, and why it was best we start straight away. I couldn't wait to leave the ward I was on so agreed. Then he let it drop I'd be going in an ambulance.
So he called my mum and laughed-at-my-foot asked if I wanted a nurse with me. I was bitter towards her so said no, I didn't want to give her a free ride to london. But then mum said she was coming and she started going 'but she didn't want anyone!' - I wanted to hit her so badly. If I could move off the bed. But then the ambulance and my mum showed up and the Sister on the ward said she had to come, so I got bundled into the ambulance and blue-lighted to London.
And I'll leave it there because I'm now running late.
Thursday, 11 March 2010
Ahhhhh
Becky Bloomwood, I needed you! Halfway through Shopaholic Abroad, but I think I was more thinking of Shopaholic Ties The Knot. Oh well, I'll just have to re-read them all ;)
I'm aware, by the way, that I've not blogged on a male writer yet. It's okay, I've got opinions on Philip Pullman, Ben Elton ... um, I know there's more, will have to get back to you lol. There's other writers too, but somehow it tends to be women? Maybe I just fit a stereotype.
I will write more about the TTP by the way, but I'm knackered, spent almost an hour on my wii dancing, and just generally wasting time. I wanted to write tonight ... I've got more ideas than last time, but I keep imagining scenes for future stories ... dammit.
I just wanted you to know I hadn't forgotten any of this. I'm off to upload some itunes, had CD's sitting around for ages waiting to be uploaded!
I'm aware, by the way, that I've not blogged on a male writer yet. It's okay, I've got opinions on Philip Pullman, Ben Elton ... um, I know there's more, will have to get back to you lol. There's other writers too, but somehow it tends to be women? Maybe I just fit a stereotype.
I will write more about the TTP by the way, but I'm knackered, spent almost an hour on my wii dancing, and just generally wasting time. I wanted to write tonight ... I've got more ideas than last time, but I keep imagining scenes for future stories ... dammit.
I just wanted you to know I hadn't forgotten any of this. I'm off to upload some itunes, had CD's sitting around for ages waiting to be uploaded!
Wednesday, 10 March 2010
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.
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.
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