Last 2 weeks: Last two weeks haven’t been the best... - ICUsteps

ICUsteps
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Last 2 weeks

Sepsur
Sepsur

Last two weeks haven’t been the best. Apart from being in a very clean 12ft x12ft sealed box with very little interactions from anyone who isn’t dressed like a mastermind serial killer in full PPE & no ambient sound at all from outside my room to cut down chances of cross infection.

I was a little caught in the chicken & egg trap. One test needed to be complete before they could rule out one thing and look for the next.

The staples in the back of my head delayed so much. I’d picked up an incredibly painful chest infection from my time not being isolated in the previous hospital, the previous week.

This took ten days of broad spectrum IV antibiotics to shift. If you have little immune system, you don’t get the response associated with infection, very little fever, no phlegm, mucus etc etc - because these are all the result of the bodies response to infection. What I did get was the sensation of being punched in the side for about a week constantly.

A typical day started at 5am with 3 or 4 attempts at taking blood to check infection markers - after a week of this - I asked to not be the crash test dummy anymore because I looked like I had a smack habit & it became a traumatic start to each day. They then conceded that some people can be a little ‘dry’ early morning. From then on they tested me everyday after 9 - with no issue.

It took them about four days to get to the wound on my head because I had just carried on bleeding for so long. I have to say, a sound you should never hear in life is a staple gun firing off at the back of your head.

Eventually I had full body CT scans to see how the disease was progressing throughout my body, the next day was a CT scan just of my head to look for damage from fall, brain bleed, sign of stroke(?) etc etc.

No obvious damage or progression of leukaemia. My lymph nodes on the surface begged to differ - imagine 2 or 3 tennis balls lodged in your armpits, a bag of marbles running along your jaw sort of gives you an idea.

So Friday a week ago I have 3 biopsies on armpit nodes ( not painful) but disgusting and bloody to see if leukaemia has transformed into a more aggressive lymphoma - tests results pending - a nice little light lunch of curry - I’m off leukaemia drugs which restrict my diet ( no curry no marmalade) until they know what made me fit and crack my head.

Half an hour later - lumbar puncture- which is extremely uncomfortable & disgusting.

I now know I have no brain or spinal column disease, cancer, bleed, damage, tumour etc etc.

I hadn’t realised that if my leukaemia had infiltrated my brain or spinal column, that this was really really not good, so their first observation of finding a couple of rogue cells in my spinal column fluid was deflating. It was then decided that this was a contamination from blood on entry of needle - because the other 3 samples had nothing. Staples out in next morning & MRI scan to follow, came back absolutely clear.

So now we have to see neurological specialist - they suspect that I am reactive to some families of antivirals. I was on one in ICU that caused me to vomit like a scene from the Exorcist, fit & get locked in for periods of time.

An antiviral I took at Christmas had a similar build up effect - so I asked to come off it. They suspect the medication has left me with a predisposition to a mild epilepsy. Tomorrow I find out treatment plan for old or ‘new’ disease.

So that’s me 😂

43 Replies
oldestnewest

Complex journey for sure.

Wishing you the best.

Jig

Sepsur
Sepsur
in reply to JigFettler

Thank you

😷🤕🤒🤮🤐

Wow, what a couple weeks you’ve had 😳 My dad was convinced yesterday that he was having a gallbladder attack. I told him that he had just about every part of him examined while he was in the hospital. I think you definitely have him beat though.

I hope they figure out what’s going on quickly and get a good treatment plan for you!

Sepsur
Sepsur
in reply to NDFan65

Thank you 😊

Wishing you the absolute best xxxxx

Sepsur
Sepsur
in reply to Pandysgirls

Thank you 😊

Rhyl1
Rhyl1Administrator

Wow, full MOT, service, engine oil and air filter change!!! But still got an intermittent electrical fault no one can diagnose!!

Sepsur
Sepsur
in reply to Rhyl1

Indeed 😳 - just one great service after another 😂

Good luck on in finding out what is going on in what’s sound very complex situation . Wishing you well xx

Sepsur
Sepsur
in reply to Mccarthy0702

Thank you

I have said it before and I will continue to say it - you are remarkable. You too have had a rough couple of weeks , but still find the time to support others in this group. Thank you x

I really hope they get to the bottom of this soon for you .

Sepsur
Sepsur
in reply to Ferham

Thank you 😊

Wow hoping that all goes well for you x

Sepsur
Sepsur
in reply to Rgsable

Thank you

Oh wow!!! BLESS YOU 💜 You are incredibly strong! Wishing you all the best and thank you for being pivotal in this group!! Xxx

Sepsur
Sepsur
in reply to Dolphin011

🙏😊

Oh sweetheart you've been through the shit and here's me wingeing about getting over covid,really wish you all the best I'm guessing your bored shirtless as no visitors allowed I was in two weeks and it killed me ask if they have small potable TVs with Ariel's they do in I u usually I had one very small but a god send!if you are bored pm me I will endeavour to try to send a whitty reply😘

Sepsur
Sepsur
in reply to Picklepickle

🤣🤣🤣🤣 - thank you for making me laugh - thankfully I got discharged Thursday. They were meant to phone me results on Friday but they hadn’t got them by Friday afternoon - it will now be tomorrow 🤞🏻

Oh and tbh I'm panicking as my ex in currently in a and e from not eating he's been told he has bowel cancel after having bowel out and is awaiting chemo,not gonna sleep much tonight!

Sepsur
Sepsur
in reply to Picklepickle

Bloody hell - when it rains it pours.

Sepsur
Sepsur
in reply to Picklepickle

The good thing is it’s very treatable, especially if it has been diagnosed early - I have 2 friends who are many years post surgery.

You are one amazing human being, truly inspirational x

Sepsur
Sepsur
in reply to HopefulA

Thank you 😊

You’re inspirationally strong! Hoping you get the best results! Stay strong 💪🏼 x

Sepsur
Sepsur
in reply to MarthaKos

Thanks - how’s our friend today - any fever?

MarthaKos
MarthaKos
in reply to Sepsur

He is not very well, we don’t know what’s wrong at the moment, he has a very high heart rate and looks like he’s struggling to breath, the bad to increase the vent to 30% and fever this morning if 38.2. He hasn’t slept well at all, last night they said it might be withdrawal from reducing the sedation, but this morning I felt from what the nurse said that he’s a bit worse? So I’m just waiting for the doctors to see him and then call me 🤯

Sepsur
Sepsur
in reply to MarthaKos

Oh dear - well if it’s withdrawals, which aren’t very nice, there is a reason for temp spike.

MarthaKos
MarthaKos
in reply to Sepsur

I don’t know, he has all the signs of sepsis In my opinion, but we will have to wait for the professionals 😩 I was really hoping for a good week but .. ☹️

Sepsur
Sepsur
in reply to MarthaKos

Well hopefully they will have got to it early - IV antibiotics in a timely fashion should do the trick 😊 - Sepsis became serious to me because it had already become septic shock by the time I got to hospital.

MarthaKos
MarthaKos
in reply to Sepsur

Let’s hope so, he is already on antibiotics due to what they said was acute pancreatitis last Tuesday. He had a couple of better days (Friday & Saturday) and since yesterday he’s not well again ☹️ I feel this is never ending

Sepsur
Sepsur
in reply to MarthaKos

I can imagine, J, my wife, always said it was just so unforgiving on and on lurching from one thing to the next.

best wishes to you mate.

Hang on in there Sepsur.

You're a beacon for us all!

Sepsur
Sepsur
in reply to Woo2

Thankyou 😂😊😊

Sepsur
Sepsur
in reply to Woo2

Thank you - a little bit on tenter hooks this morning

Good luck Sepsur! Hopefully a better week ahead for you 🙏🏾🤞🏾🙏🏾

Sepsur
Sepsur
in reply to DrARDS

Thank you

It amazes me how you go through all that and still are able to support the people on here, while keeping your own spirits up!

Good luck with the test results and your continuing recovery 👍💪

Sepsur
Sepsur
in reply to stevet11753

Thank you - alas no results today - so it another restless night

stevet11753
stevet11753
in reply to Sepsur

Fingers crossed!

Oh my goodness what a time! Thank goodness all the tests came back ok but such a shame a medication can have that effect and cause a fall. I hope you have your plan soon and have a more restful time of it!

Sepsur
Sepsur
in reply to RockRunner

Thank you

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