Hello, my name's Lucy and I have ITP. (Not very surprising as I'm on here!)
That makes me feel like "Hello, my name's Lucy and I'm an alcoholic"!
Moving swiftly on!
I live in the UK and was kindly pointed here by Ann who gave me lots of good advice on things to look at. I joined the UK ITP Support Association early on, have plucked up the courage to do some more internet searching this weekend which has depressed me as I was living in the dream world of 'they'll fix it and I'll be back to normal' so thanks for popping that bubble! Are there many adult ITPers who do get the acute version compared to the chronic one?
Anyway, I'd like to say thank you for the huge amount of good information on this website, it is invaluable, and nice to find an active chat room.
I'll tell you my story, so please skip to the bottom now if you're busy with your own stuff/woes cos I'm sure mine will be very samey, but it's been cathartic for me writing it down!
On the 29th Sept I spent an afternoon moving about 50-60 hay bales (not uncommon of me) and was surprised to find a few "lumps" had come up on my forearms. They were a bit odd. By tea time I was worried as they had got bigger and were bruising a little. My husband was a bit alarmed when he got home and thought I'd been bitten by something or had a histamine response, but as it was a Sat evening and A&E would be hideous, we trotted off to see my mate who's a vet! She said looked like bruising see what it was like in the morning. I had a lot of other bruises starting to appear when I got undressed at bedtime.
On Sunday morning I was worse so rang 111 (the new NHS Direct - which was no use on the internet btw!) and spoke to a concerned lady with a crib sheet and when we’d got past her level of competence then a nurse who said for me to go and see a Dr within 3 days.
By Monday morning I was very concerned and got an emergency Drs appointment at 9 am, he’d got a red bag blood test done and told me to go home and not do anything. By 3 pm he phoned and told me to go straight to the Royal Derby Hospital Medical Assessment Unit and not to bump myself on the way in as my platelets were low!
When I got there they said they weren’t low, they were 0! I was checked out by a Dr and had some more bloods done (which were a count of 4 I found out later), given 60mg of Prednisolone I finally got a bed by about 11 pm, my brain was flying and I watched some very poorly people coming and going til 7 the next morning. On the plus side it made me feel more sorry for them than myself.
I had another 60mg of Prednisolone in the morning, an abdominal ultrasound in the afternoon, the diagnosis of ITP from one of the Haemotologists early evening who said I was allowed to go home if I promised to be good as MAU had some very dodgy bugs in it and there were no beds free in the Haemo Ward, then another 60mg of Prednisolone and finally sent home at about 10.30pm.
I was on 60mg of Prednisolone once day from the next morning.
By Thursday (week 1) when I went back to see a Consultant my platelets were up to 20 but the steroid side effects were kicking in and I felt terrible! The cure is worse than the illness! I was signed off work for 2 weeks.
The following Thursday (week 2) I was at 248 so allowed to do my horses again, and a week later (week 3) 334, my steroids were dropped to 40mg per day and I was signed off work for a further 4 weeks. A day or two after I sent this to a friend of mine who’s a pharmacist and had asked what I was on and how I was feeling cos I’d been moaning!
I am writing this at 2.30 am cos I can't sleep; my brain won't switch off although I'm tired. I have spent the last 3 hours in bed with pains in my knee, ankle, wrist and finger joints (knees worst), which have been really cold even though I have a hot water bottle. My calves and thighs have cramp. If I get to sleep I wake up feeling knackered. I have to get up between 7-8 am for my tablets so they are less likely to keep me awake at night. Ho hum! In the day I feel tired and achy. I am constantly thirsty and hungry. I generally feel sick. I am getting a lot of headaches and my eyes hurt. By the end of the day my tummy has blown up and I have to let my belt out a couple of holes. My legs are filling up. If I do much in the way of walking my knees are really bad (swelling up and painful). I feel like someone has let all the sand run out of me if I do much of anything! Having just started to get my weight under control I feel like I’m banging it all back on, sigh! I am also getting a few dizzy spells and have lost some cognitive function but that could be stress related and a function of my old head injury. I must admit I felt better (less bad!) today than previously so maybe the reduced dose is starting to take effect?
Week 5 I’d gone back down to 254, but they dropped the steroids to 35mg per day. I also had a further liver ultrasound as they’d found a “smudge” on the first one and that was clear.
Week 6 I didn’t “feel right” and was getting blood blisters on my cheeks and tongue so I phoned in and went for some more bloods and was pleasantly surprised to be back up to 275.
Week 7, I’ll let you know on Thursday!
So that’s me and ITP to date, sorry if that’s boring!
Thank you to everyone who has put effort into this chat room as it has some brilliant stuff for people new to this illness. I will “enjoy” reading things over the next week or so. And also thank you if you’ve bothered to read through this, as you’ve probably all been there, done that, have the t-shirt already and know how it is!
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