I aten't dead

[selenay]

You know, I never thought using that subject header could be this appropriate. I had planned to lead with "I told you I was sick!", but this seems more appropriate.

So, you know how I was really breathless and light headed yesterday? And was having blood work taken at my insistence because I thought that I might be anaemic?

Fast forward to yesterday afternoon, around 4.15pm. I'd finally got a break on a problem that I've been trying to solve for nearly two weeks and was planning to work a bit longer (on my couch, I wasn't that stupid) before calling it a day and settling down for my Wednesday night Skype with Mum. That was when the phone rang. It was my doctor's office to say that the lab had called and I needed to get my ass to the ER because my haemoglobin was very low and I needed a blood transfusion ASAP.

When I picked myself up off the floor, I dropped my boss a note to alert him that I may not be at work today (oh, my naivete at thinking I'd only be at the ER for a couple of hours), called Mum to let her know that I couldn't Skype and called my cousin for a lift over to the ER.

Checked in, told them my numbers, waited a while (an hour, not bad) and got admitted to the ER. I was popped into one of those highly dignified backless gowns, settled into a bed and hooked up to monitors where I learned that my resting pulse was 110. Meep.

Then they attempted to take some blood for more blood work and type and cross match. Two words: blown veins. My arms are so attractive right now. The worst part was when they had to do a second draw for type and cross because the vial's label got torn when it was on the way to the lab. Finally, they blew a couple more veins before finding one (possibly the only one) to put an IV into and started filling me with saline.

My haemoglobin was 59 when the tests came back. It should be over 120. No, I had no idea that I was that sick. A nurse friend tells me this is incompatible with life. Seriously, no idea. But apparently it's a miracle I was upright and concious and we'll not think too much about where I would have been in a day or two.

In the end, I got three units of blood over the course of the night. Yikes. That brought me up to 99, which isn't normal yet but I do feel much, much better than I have done for ages.


It looks like the issue has been a GI bleed, possibly due to some form of inflammatory bowel disease. So, I don't have IBS like I've been told for five years *sigh* And the bloody diarrhoea that my doctor wasn't worried about on Monday was, in fact, a very bad thing that she should have been worried about.

I'd been losing blood for months, they think, which is why I was able to still be upright and concious yesterday. It happened so gradually that I compensated, acclimated, and didn't notice that I was getting weaker over time. Looking at how bad I felt yesterday, I know that I probably wouldn't have been concious for much longer anyway. Trying not to speculate on that right now.

I've got lots of pills to treat the possible IBD and a possible ulcer, although the ulcer seems incredibly unlikely according to the GI specialist that I saw this morning but he needs to do it until we've got a definitive answer. They've booked me in for a scope next week to establish exactly what is happening and I've been told under no circumstances to taken naproxen ever again because that may have been the cause of the diarrhoea, although probably not the blood. While the diarrhoea didn't cause the extreme anaemia, it probably exacerbated it and I've had no diarrhoea at all since I stopped taking it.

Bad naproxen. No biscuits for you.


Anyway, the good news is that although it's been very scary, I'm now at home with instructions to take it easy for a while. I'm taking tomorrow off sick, I think that I'm allowed. I'll have to sit down for a chat with my bosses on Monday about possible ramifications: I already know that I'll be having a day off next week for tests and who knows what else will be needed? The "I nearly died" thing should help.

Also, my mother booked tickets and is coming to stay with me for a few weeks. She cunningly did it before she could speak to me today (at dad's suggestion) so that it was a fait accompli and I couldn't stop her. I'm sort of glad because I really feel like I need my mummy right now. It was very lonely in the ER last night and it's only just hitting me how ill I was, how close things were, and what may be in my future.

The weird thing is that I am apparently still quite sick because I'm probably still losing blood but I feel better than I have done in months. I'm not quite sure what to make of that. I felt more legitimately sick yesterday.

Tonight I have Ashes to Ashes DVDs newly arrived so I think that I'll snuggle down with them and then have an early night. I'm so looking forward to my nice soft snuggly bed.

Comments

[nosila]

See, we told you that you weren't crazy. Not with so much going on for so long.

[selenay]

You did and thank you for saying that. I very nearly didn't do the blood work on Wednesday because I'd talked myself into believing that I was overreacting to it all. You guys have been awesome about talking me down when I thought that I was crazy :-)

[evil_plotbunny]

*hugs tight*

[selenay]

Thank you, hon!

[stephicozar.livejournal.com]

Jeepers. Glad you're okay (or as okay as you will feel right now). Scary scary, but hugs and get well soon.

And totally no shame for the wanting of the mummy. Glad she's on her way to you.

Good happy get well thoughts for you.

[selenay]

Thanks, hon. From the sounds of things, I've got lots of stuff ahead of me but I'm very happy that there are things to have ahead of me.

I'm really looking forward to seeing Mum.

[stephicozar.livejournal.com]

You just have to keep on pushing for an outcome and don't let any of those horrible doctors forget about you. Stay strong!

[sugoll.livejournal.com]

Damn... Also, eak!

RRR at various docs for screwing things up, but yay for the hospital catching things now. And glad your mum's on the way. These things require support systems.

As for feeling better: I've known people who've felt better just because there have been doctors who have been able to put a label onto something - moving from "we don't know" or "we're just guessing" to "this is happening" removes a lot of what it could be, and means you can set a course to navigate.

Anyway, *hug*. I'm amazed you're able to type.

[selenay]

Yeah, it was rather scary and a closer call than I really knew at the time.

I'm told that people often feel turbo charged after a transfusion, which explains why I felt so amazing yesterday. Knowing that people are now taking me seriously and trying to find out what is wrong really helps as well.

I'm amazed that I was working all day on Wednesday :-) It seems rather amazing considering how ill they say I was!

[alyse]

God, that's so awful, but I am beyond glad that they caught it in time.

[selenay]

Thank you :-) I'm very happy that it's been caught and I'm here to tell the tale!

[paranoidangel]

*hugs* At least they've worked out what the problem is, so between the new blood and the drugs and your mum, you'll be feeling much better.

[selenay]

I will :-) They don't know exactly what the problem is, apart from suspecting that it's the GI stuff, but it's somewhere to start. My iron levels being normal pre-transfusion is currently confusing things a bit. But at least they'll now keep looking until the find the cause!

[paranoidangel]

I meant they've worked out what the problem was that was causing you to feel so crap this week.

[feather-autant.livejournal.com]

Aww Sel! ::hugs you::

I've seen hemoglobins lower, but not much, and certainly not in a person your age! No wonder you felt so bad. People always say they feel turbo charged after a transfusion-- and they realize how awful they felt before it.

Any of the NSAIDs can cause bleeding. Which really sucks because you use them alot. :(

Take it easy, and hopefully they'll figure out where it's coming from and get it stopped!

[selenay]

My friend's husband, who is a nurse, apparently swore a lot when she told him my hgb levels :-) And the nurses at the ER said they've never seen levels that low in someone my age. It's weird, because I still don't feel like I could possibly have been that ill.

I'm realising just how awful I felt on Wednesday. I was working from home and kept having to lie down to make the dizziness go away. So I can totally understand why the transfusions have made me feel so good!

Not that I want any more. I'm really hoping my hgb levels are good next week.

I've decided that if it's a choice between pain and being alive, I'll opt for being alive. Maybe the doctors will take me more seriously about figuring out the cause of the back issues now that they probably won't be letting me having NSAIDs ever again?

[gaspodia.livejournal.com]

That is an incredibly scary close brush! Thank goodness you were doggedly persistent in the face of their disbelief that you were ill!

On the plus side, it does now sound as if a proper diagnosis (and therefore correct treatment) is possible.

I think I'd want my Mummy close too after that drama :)

[selenay]

It's starting to come home how close everything came, so I'm very glad that I have Mum coming tomorrow. I may need a good cry on her.

But at least I'll be getting a diagnosis now and my persistence about ordering blood work has paid off. I was feeling so cruddy on Wednesday that I nearly said "sod it" and didn't go. What an idiot I was!

[fahrenheit-f430.livejournal.com]

DUDE! D:

*careful glomp*

[selenay]

{{{hugs}}} Thanks, hon.

[djonma.livejournal.com]

Hmm.. remind me (because I'm sleepy and kinda drugged up).. you have hypermobility yeah? Even EDS?

Because... EDS is known to have major GI issues - I had lots of testing for ulcerative colitis because I bled so much.
Turns out it's actually because the EDS skin is so weak, it's even weaker on the inside, and the slightest upset can cause tears... and our skin doesn't heal well, so the tears don't heal well, scar, and then can open up again.

There's a neurogastroenterologist in London doing a special study on EDS and GI issues, so it's all really new info.

I've been threatened with hospitalisation because EDS is known for causing further bleeding and I've been bleeding badly in my bowels.

If I'm totally wrong and you don't have hms / eds stuff... ignore everything I just said! I find it so hard to remember who has what these days :-(


Onto actual known stuff - wow. I'm so glad the doctors called you quickly and you got to hospital ok and got the blood you needed!
That is really very scary, and just shows that doctors and people not listening when you say you're ill... well they really SHOULD!

Hopefully now they can work out what's going on and FIX it!

*hugs*

[selenay]

I have hypermobile type EDS. One of the internal medicine guys on Wednesday night asked whether EDS has any GI implications (he knew very little except for what he'd read in text books twenty years ago) and I couldn't think of any. I'll see whether I can hunt down any of that info to talk about with my GI guy.

It may give us some clues if they can't find anything IBD-ish. I've got around 2 inches of inflammation in my rectum but he said the colon looked good above that and the inflammation doesn't look like enough to do what happened. If there's a bit of inflammation plus a tear due to EDS, that may explain things.

Anyway, that info does help. Thank you!

Finding out what's wrong and fixing it is my dearest wish right now.

{{hugs}}

[djonma.livejournal.com]

I *thought* it was you with Type III :-)

I don't know enough about it really, but if your Dr wants really good info, the Dr in London is called Professor Aziz and he's at Bart's Hospital, London. I'm sure your doc can find the contact info. I don't know if they can contact a UK doctor, but as he seems to be THE guy for investigating the GI side of EDS, he's definitely a good guy to be contacting! Purely as a doctor wanting further info kind of thing.

[clairecnc.livejournal.com]

Prof Aziz, is amazing. He thinks he can get me off my jejunostomy feed. My stomach is very sluggish because of EDS related gastroparesis.

Zarate-Lopez N, Farmer AD, Grahame R, Mohammed S, Knowles CH, Scott S, et al. Unexplained Gastrointestinal Symptoms and Joint Hypermobility: Is Connective Tissue the Missing Link? Neurogastroenterology and Motility 2010;22:252-62.

I don't know if you can get hold of this, but it's a brand new paper out by one of the leading EDS Hypermobility Rheumatologist in the UK, possibly 'the' leading one. What he doesn't know about EDSIII isn't worth knowing.

[clairecnc.livejournal.com]

I've got a copy of the article, as I discovered I had access, it doesn't give any major conclusions, but might be worth a read. If you want to have a look let me know. xx

[djonma.livejournal.com]

Ooh can I get a copy please? I have no idea how to find those things!

djonma@gmail.com

I'm really hoping to get a referral to Prof Aziz at this year's Prof Grahame appt. Last year I focused on autonomic stuff and will be seeing Prof Matthias as soon as they can fit me in :-)

[elenopa.livejournal.com]

Sending good thoughts your way.

[selenay]

{{hugs}} Thank you! All good wishes are gratefully received.

[nic]

OMG. ****hugs**** This sounds incredibly scary. I'm keeping you in my thoughts and prayers. ****hugs****

[selenay]

It actually was scary. I can't believe it all happened. Your thoughts and prayers are much appreciated {{{hugs}}}

[sazandra.livejournal.com]

Meep! {{{gentle hug}}}
That sounds very scary.

[selenay]

It was :-( I'm still quite scared - is that it? Is there something really horrible waiting for me? - but I'm glad that so many lovely people are thinking of me and I'll have my mummy with me soon.

[clairecnc.livejournal.com]

*big hugs* Sorry I'm so late to this. Take lots of care and I hope the scope goes/has gone okay today. xx

[wadjet-theperv.livejournal.com]

God bless you sweetie, you're in my prayers, Be well. Hugs xxxx