7 weeks on and a million questions sorry

[Alfiedude99]

hi and good morning all, well I’m 7 weeks after icu ventilation and I have a million questions I’m hoping people could shed some light on so I don’t dr google everything and think I have every illness known to man!! I was on ventilation for 9 days in icu and I still have health issues popping up here there and everywhere…….firstly kidneys, I have constantly weed for England literally about 1 an hour it was a problem way before I went into hospital and while I was was there I had a catheter, afterwards my wee problem had sort of righted itself but for about a week, I thought I might of had kidney stones etc and the catheter could of dislodged them but it’s back and constant, had a load of ultrasound scans and they’ve come back as I have multiple things on one kidney and several on the other so I’m now waiting for ct scans , because I’m the nosiest and anxious person in the world I got a print out of results……possible kidney stones the largest is 7mm on one and the other is 8mm on the other, not worried about this but chances are they’ll have to be removed cause they’re classed as too big to pass……is this another effect of icu? Has anyone else had this after icu?

Question 72 🙄 the numbness…..the back of my head, scalp in mainly numb but then excruciatingly painful around the edges of the numb patch, the only way I can explain it! I’ve got a constant lingering headache…..not too much to have painkillers but enough there to be noticeable…..sometimes when I tie my hair back or brush it it kicks of major headaches where painkillers don’t touch it, think sledgehammer sort of pain it’s brutal and lasts for hours. Numbness on my big toe and the next one to it and pins and needles on the top of the same foot, should that of righted itself by now? At what point do you request a referral to a nerve person?

Constipation…….I’m having to have laxatives in order to go, not a new thing but worse than it was, I had laxatives daily whilst in hospital, my friend told them my poo problem, she’s my best friend and knows 😳 but debated the friendship level as so many laxatives in icu and trumps turned into not trumps for my stay (she said to look at the funny side of things instead of the horrible things……definitely not funny for me but she found it hilarious!!) the nightmares, delrium and scary stuff has eased off loads but still for the life of me can’t get my sleep in order I’m up and down all night which is tiring me through the day! Pneumonia has now fully gone and the drs are happy with my X-rays, still sound like a man some days and practice every day having a sing along to Madonna’s classics but one have to keep stopping to breathe I can’t do both at the same time…..apologies for the essay and I’ll probably think of a lot more, forgetfulness is another one!!

[Sepsur]

I can’t answer effectively all your questions because your dilemmas are personal to you

I didn’t have kidney stones although my kidneys failed & I enjoyed 7 weeks of dialysis - if you have any renal issue this can exacerbate delirium because the kidneys aren’t able to rid your body/brain of the toxins whizzing round your body.

Having a catheter means the bladder isn’t being ‘normal’ ie muscles allow bladder to fill and then we empty it ourselves - a catheter means bladder is emptying constantly- so you lose muscle memory - pelvic floor exercises will help.

Nerve damage can take months/years to repair so don’t fret after 7weeks - just give it time.

I hope some of this helps

[downthemoor]

Without writing an essay take a look at my previous posts ...I feel for you as at 7 weeks I was a total wreck and nearly a year on now am probably only 50% of the old me. I didn't start sleeping for a good 8 months...ICU wrecks any sleep pattern you had . I have spent this year either up all night , taking melatonin , zoplicone, Kalms, using Headspace, podcasts ..you name it I tried it. Even when I got back into night/day pattern it was difficult as all sorts of body pains, awful thoughts, and the fact I wasn't well enough to do any physical exercise to tire me physically made it difficult. 7 weeks is really early days and I never want to see those times again! At 6 months I finally got ICU follow up appointment and that was a turning point for more understanding and help. This morning I have my fist appt with Critical Network physio via zoom as I'm desperate to find some exercise that's safe.

Notice you mentioned pneumonia ..I was discharged with 'clear' chest x rays...it took me months to breathe comfortably...I didn't realise till it got better that it was odd!

I was admitted with severe hyponatremia and STILL occasionally can feel the remains of the excruciating headache which I said I had in texts prior to my collapse. As for memory ..brain is addled ...Vit b12 is helping I think ...Google brain fog and it's all there.

This group has been invaluable for getting me through this...keep using us!!

[Sepsur in reply to downthemoor]

Jo is a brilliant physio/trainer for CCSN, as well as having a special capacity to make you want to do what she is asking - she makes it ( almost) fun - one in a million

[FamilyHistorian]

the trouble with constipation is they put you on laxatives and then forget to take you off 🤭

[Alfiedude99 in reply to FamilyHistorian]

It was horrific!! The consultants told me I had to spit out what I coughed up….my sister was putting a plat in my hair laughing when I was trying to move forward to get the bowl to spit cause the consultant was near and I didn’t want to get told off....all the jerking towards the bowl and my sister yanking my head bk laughing at how we did the same pulling away when we were younger…..I literally looked like I was on some sort of bungee cord trying to get the bowl!!!! Far too many movements went on and all hell broke loose because of the laxatives 😳🤢……and she tells me i have to laugh!!! It seriously was not funny at the time!

[downthemoor in reply to FamilyHistorian]

They also just don't find out anything about your past history! I have IBS ...and admission was severe hyponatraemia caused by D&V ....they then gave me LAXATIVES ....calling it 'overflow!!I requested stool tests on the ward as was passing blood and motions were black but the nurse looked at me as if I was stupid and never came back! I discharged myself the next day! Came home (off all drugs) still with diarrhoea and this then turned to the first 'normal' bowels I'd had in years. But now back to the old IBS me! It's a joke the way they 'guess' stuff.

[helen_m]

Hi there,

I've not had kidney stones since ICU but kidneys did fail and currently now have reduced (35%) kidney function.

The numbness will reduce - I got out of hospital in April this year and the numbness in my foot was painful to touch. Now, 7 months later, it's vaguely still there but much, much reduced. The numbness I had in my elbow is gone. My right leg still shakes but not as bad as before.

I also had headaches - they come back when I have a cold (I have my first proper cold now since I was sick) but that also went away.

Constipation - I had to take probiotics when I got out of hospital because my gut was wrecked after the amount of antibiotics I was on. That helped but also natural laxatives I think are better than the chemical stuff so I occasionally drink prune juice. Drinking lots of water has helped me a lot too.

My sleep is still a bit up and down but mostly better than not.

I also had pneumonia and cause of the tracheostomy and not speaking for so long, lost my voice - it cracks when I try to sing. Luckily I was never much of a singer. I do lots of walking and find that this helps me build up strength in my lungs. Someone recommended swimming and singing I think you sound like you're doing great, one of my doctors said the voice is a muscle and you need to exercise that muscle.

All the best!

[Alfiedude99 in reply to helen_m]

Thanks for your reply…..good to know about the voice and singing I can sing one line then can’t do the next cause of not being able to get a breath quick enough 🙄 I’ve also got , as grim as it sounds, a horrible taste when I exhale….it takes like mud or something!! An odour from my chest if that makes sense?

reassuring to hear about the numbness/pain it’s painful but numb I hope it clears up sooner rather than later ……I’m sort of preparing myself on the possibility that I might lose my hair on that patch, hoping not 🤞 but if I’m prepared for it then it won’t be as upsetting if it happens

I’m drinking lots but still having to take toilet tablets a couple of times a week 🙄

Thanks again and you take care…..keep singing 😊