My target INR=2.5
My theraputic INR = 2-3
My actual INR = 1.7, down from 3 last week, i.e. it bounces around without apparent rhyme or reason.
My target INR=2.5
My theraputic INR = 2-3
My actual INR = 1.7, down from 3 last week, i.e. it bounces around without apparent rhyme or reason.
I’ve been hankering after a dog for while; I can’t have one unless I move out of town. Dogs and working life just don’t go together. But I am noticing the sweet ones all over the place: in this case on the front of Freshly Pressed? [His name is Elvis, which gives me a scarily good title for this post!]
So, to the Stroke Clinic…
I didn’t realise until I was waiting in the Macmillan lounge, next to a day ward full of people having chemo, that I had no idea what happens at a Stroke Clinic. I’m pretty sure strokes and cancer are very different things, but I did have that moment of “um… am I supposed to be here, and… eh?”. I might even have texted a Joe to say I didn’t really want to be back there at all, and I might have texted CG to say I was waiting in an odd place (CG’s advice upon hearing this: “Keep any eye on them and make sure they don’t try and amputate a limb”).
The good news was that it turned out to be Duncan taking the clinic (my doctor in Hospital Number 3). While this means I’ve still not met a consultant at Hospital Number 3, when someone you know and already get on with turns up, well, it makes everything ok.
Lots of you kindly emailed questions over and, here is a summary of what I learned today:
So all normal, as these things go, and I don’t go back to that clinic until February, so must be a-ok.
Here’s there weird thing though. A couple of times before and since this all happened, I’ve felt like I might have slept oddly on the right side of my neck so I could feel it in the morning. Before the event I assumed it was the remnants of an injury from when I was 7 or 8. After the event I assumed it was the tear. But I checked today when he was drawing pictures and the tear is on the left side. So, whatever’s been going on, the tear was, and always has been, silent and unnoticed.
INR (blood) checked this morning; it’s still at 1.9. This means waiting to be re-dosed again; I find out at lunchtime.
I actually thought it would be ok today (i.e. up between 2-3) since yesterday’s jab produced the first bruise in days:
For those of you keeping up with the issue of she-who-shall-not-be-named, I got a voicemail the other day. Then I got an email:
I am writing in response to the issues regarding your experience in the Anticoagulant clinic, which you have raised in your letter to Dr [Name} 1/11/10.
As I said in the message I left on your voicemail 5/11/10, I am undertaking an investigation about these issues and aim to contact you with a response by 11/11/10.
Please let me know how you would like to receive the response: phone call, letter, email or a meeting.
Please do not hesitate to contact me if you wish to discuss the matter further.
I look forward to hearing from you.
[Name of Matron]
Thanks for being in touch [Name of Matron].
As I mentioned in the letter, I do not require a response on ‘what happened next’. I was extremely uncomfortable writing the letter, but it played on my conscience that possibly no one else would say anything either.
I truly hope that you discover that, perhaps, this is down to trying to do too much in too little time, or something similarly explainable, and that it can be rectified in a positive way. I don’t need you to be in touch again, and I hope this is also helpful.
Case closed. I hope.
My friend, Emma S, put this on her facebook last night. It made me giggle and I kept hitting replay. It kind of reminded me of some of your reactions when you found out about the stroke thing:
You can hit replay. And show a friend. You know you want to. And no one is watching!
In the spirit of starting with a joke, this rough transcription of a text conversation made me laugh out loud this morning. You know it’s got ok when the boys start taking the michael again:
This time last week I had been in the Acute Stroke Unit at Hospital Number 2 for about 2 hours. This week I am in my own house. I’ve been up and down stairs all day (getting more elegant all the time; or less gauche, depending on how you look at it). I went to the hospital for a few hours this morning. I slept. The parentals came over and stocked the fridge. And I’ve had a gorgeous Italian supper, brought and cooked in my kitchen by lovely Libby, which we enjoyed with Kate and Eleanor. And I’m ok but, seriously, now I think about it, what a week!
Harping back to exactly 7 days ago, may I start by apologizing particularly to Kate and Mark for scaring the heeby jeebies out of them? The story of what Kate had to put up with in the ambulance from Hospital 1 to Hospital 2 is now in the BACKSTORIES section and speaks for itself as an intro to how it was when I arrived at the acute unit. Poor Mark then had to deal with Kate and my Dad for the next few hours, while simultaneously holding my hand. Those few hours really should be all about them cos I was utterly out of it, tucked up in bed with quite a lot of beeping going on around me, getting attention every time I moved. So thank you for being there and, um, sorry guys!
Shortly after Kate and I arrived, Mark was allowed to come join us. The only conversation I remember was simple, and went like this: // Me: Mark, we’re in a stroke unit // Mark: Yep. // Me: Do you know what that means? // Mark: Yes. Do you? // Me: Think I should be worried? // Mark: No. Not now. I’m not worried now you’re here. // Me: Oh ok then. // Seriously!!! That was the sum total of me considering whether to worry or not. The power people have to make things ok is massive… probably in everyday life too, so use it wisely!
(Note: Mark has since confessed several times that he lied to me then. I’m quite glad he did though because I honestly didn’t worry the whole time, and I think that probably started things off well!)
Anyway, back to the serious stuff. The lovely unit manager came to chat while I was hanging around the hospital today and said some really useful stuff. (In context, I’d just discovered for myself that I can’t cross roads without a crossing at the moment (speed=distance/time used to be instinctive, but– temporarily – it transpires I know I can’t process how fast a car is travelling nor how fast my reactions might be.) Anyway, he said while they are all just as astonished at the speed of recovery (thanks pray-ers) he needed to remind me that brain injury recovery has no timescales. Obviously I found this more confusing than working out I couldn’t cross the road! No timescales? Seriously? I mean I don’t want it in hours but, you know, 4/6/8/10/12-ish weeks, as a guide, would have been useful! He said, “it’s a brain injury, the physical weakness we can see are fixing fast, but the brain does its own thing, and we can’t do timescales. You have to see it like breaking your leg; you’ve just broken your brain a little bit”. And you know what, thinking about it like that, like an injury, made it all make sense. So much so that I know this thing must have REALLY done something to my brain cos I found myself thinking, “No timetable. Ok, I can do that.” (Yeah… as I type, I’m also wondering how long we should give that to wear off too!)
Random stuff from today:
Ok, the only news today is the post below – STOP PRESS: AT HOME but a couple of people have just joined us so wanted to explain, you can see the basics of what happened by clicking on the ABOUT button above, and some backstories on the BACKSTORIES button. Below is just a running blurt….!
So this morning I woke up believing I had to be in hospital until at least next Monday while they worked the two strands: stabilised my longer term meds over the course of a week and did intensive physio. At 0930 the physio reminded me I wasn’t supposed to potter around unless I was walking to the loo (which was en suite) but she’d see if they could let me wander around from after the first physio session this morning.
Then the whirlwind miracle happened!!!
I can stand up with my eyes closed (you smile, its scary when you can’t!!) I can walk (its wobbly but its deemed ‘safe’), and I can get up stairs (its not elegant yet, but noone seems to care). Then came the dawning realisation….. The POTS didn’t need me to be anywhere near CN-normal, they just needed me to have the same ‘safe’ mobility as a stroked out 80 year old. Well, I can do that already! So they said they’d be happy to sign me out and… get this… organise POTS at home, if the medics would agree.
So then came the medics. Dr Duncan said, ‘no, you’re 32 and you had a stroke’. I said. ‘I’m not 32’. He said, ‘yes you are’. I said, ‘no, I’m not’. He said, ‘yes you really are [reads DOB]… oh, no, you’re not are you… if you went home you’d need to come back every day for bloods and shots and dosing for stabilisation’. I asked why my GP surgery couldn’t do that. Dr Duncan said he’d ask them and if they would i could go. They said no; I said I’d come back every day. He said I couldn’t go without a bubble echo (where they test for bubbles moving across your heart) and I couldn’t have that til tomorrow but, if it came up clear, he’d let me out if I came back each day.
[Much edited story, honest:] Ten minutes later someone arrived to take me for an echo!!! I checked with cardiologist it was clear and got them to send the report back with me straight away. Meanwhile my friends Caroline, Dave and Jayne arrived. I got back and said hi. Nurses came in and said they needed my sideroom and I needed to move on the ward. I said, ok, let’s ask Dr Duncan if I can go home then. He said no. I said, ‘you said if I had a clear echo I could go and the report is on your desk’. He said, grumpily (sorry, but you were!), he didn’t think i’d have a hope in hell of getting that today and he’d better go check then. 10 minutes later he comes back and says, ok you can go home. Be back at 10am. Transport will pick you up in time to be here by then and take you home after. He showed us the MRI scans of my brain, including the 3 strokes which are 2 obvious dots and 1 much less obvious one. Caroline brought me home (THANK YOU CG!!!).
So here I am, typing in my own bed, on my own broadband, in silence, having eaten the biggest takeout Thai with Mark and Eleanor in my own house! Ok, so I have to be back at 10am, but my bed is the best place in the world right now!
Going forward… in there at 10am every day til drugs stabilise in a week or so; POTs will visit me at home. Then only back for routine checks. Visitors welcome and much loved at home, prior arrangement preferred (!), from mid-afternoon each day!
I do know – for those of you who think I don’t – this is only the first week of many to come – but seriously… less than a week ago I had 3 strokes in less than 24 hours. But I’m walking and talking and laughing and I’m home. I also know more than ever how glorious my friends are and how incredibly, incredibly lucky I am to have you all. What the heck do people who don’t have you do???
I’ll keep blogging, as the journey isn’t over, but its certainly a lot more fun now.
p.s. Can I give a special thanks to Jo Stillwell for everything today? She knows why. x
While I’m waiting… couple people have asked if this could happen to me again. The answer is yes, but it’s highly unlikely. This was a tear in my artery: a trauma; a freak thing by all accounts. It could happen, but then I could win the Euromillions twice too!!!
While the clot is still there, the drugs thin my blood to make sure it can’t do any damage. I can prove the drugs are working… check out these bruises. These bruises are good. They mean the drugs are working just the way they should!
So the POTs came today. Arrived first at 0930 with a bunch of questions (see bullets below) and walked in on me having a very rare, teary moment as I read a text message from Lisa Leaf (also see bullets) and I had to explain that tears because my friends are so bloody amazing are quite allowed this week!
But all good news. Let me wear my trainers which was nice – almost human again. Did a load of stuff before lunch including going up and down stairs (Down is weird. Close your eyes and try it, that’s what it’s like.) I can do it. It’s not elegant but it is ‘safe’ so they would be happy to release me. I know they are comparing me with 80 year olds but I can ditch the wheelchair as a necessity, so long as I’m prepared for a slightly slower pace for a little while!
I’m looking back on a whole week where everything changed from hour to hour. On Monday morning I was fine. By Monday afternoon I was not, by Tuesday afternoon I was well and truly out of it. By Wednesday I could stand up. Ish. By Thursday I could shuffle between the bed and… um… the bed really (but it WAS shuffling all the same!). On Friday they moved me out of the acute unit and let me use the shower. At the weekend I was on a promise to stay put in exchange for the wheelchair, so that on Saturday I went to Starbucks. On Sunday Zan and I snuck to Carluccios (oh my goodness their soups are the best!!) . Today I walked up a flight of stairs in my trainers. Down is harder but I’m deemed ‘safe’ so from the POTS point of view, I’m ok to go. Now…. Can I get the docs to work out a way to sort out my meds without me needing to be here; this is the question. ??? Sleeping in my own bed is probably the best med I can think of right now.
Other things that made me smile so far today:
p.s. While I’m sitting here waiting to find out, just a special thank you for those of you who I realize have particularly turned your lives upside down to come see me a lot: Kate, Dad, Zan, Amanda, Mon, I’m talking about you in there too. It’s made it all ok. And also to everyone else (if you’re reading this you are definitely in that group) for texts and everything – you’ve really kept this chick’s spirits up. And to the one who said goodnight last night: twas the best goodnight ever. xx
Yes, it’s early but daytime is busy and nights are long!
As those of you who’ve been practically living with me for the past week, in person and by phone/text, already know: what a difference a day makes!!!! No midnight to 2am headache. Horaay!!! I’m totally crediting the prayers among you, and would love it massively if you’d keep going, including getting me out of here asap (tomorrow really isn’t too soon!) and keeping my sane-keeping solo room in the meantime.
And no, of course I didn’t sleep much this time, but lovely Eleanor will prob bring me my throw (which I bought with Wendy G in Memphis) and that will help cos it gets cold in here with the windows open at night, and one needs a window open!
I’m really looking forward to today. The Physios and Occ Therapists (we’ll just call them POTs from now on, shall we?!) are back as it’s Monday, so I actually get to do something constructive!
Still smiling about:
Just a reminder that one gang of people doesn’t yet know, as Perry and Lise both away. I’m going to see if I can take care of Lise bit via David today, but Pem not til end of honeymoon, so no facebooking, people. Thanks lots!!
p.s. Someone asked me how I felt about the stroke… I sent them this… (apologies Nan…)
Blimey, just read the post below back and it sounds awfully dull!!!! Just to say I’m in a blooming good mood and there is sun shining through the window. It’s a very good day and I’m looking forward to seeing everyone.