Hi, newbie here

[Deb244]

I was admitted to Cardio Thoracic Critical Care on 28th Nov, 2022, with Double Pneumonia & Sepsis. I have no memory of the period from walking into the ambulance to having my Tracheostomy removed 4 weeks later. My family have filled in some of the blanks, & I have the scars as evidence.

I then spent over 3 weeks on the Renal Ward, including several rounds of Dialysis, until my kidneys recovered, followed by a transfer to another hospital for Rehab.

I’ve been at home for just over 2 weeks now. I have regular visits from OTs, a Care Package consisting of 3 x 30 minute visits daily & twice weekly District Nurse visits to redress my Tracheostomy wound. The Community Physiotherapist is visiting, for the first time, this week.

I am walking, using a frame, but only attempt the stairs with OT support, so I am confined to a bedroom on the first floor, with access to the bathroom (awaiting grab rail in the shower).

I just want to make sure I’m not the only one dealing with -

Hair loss - the comb is full of it!

Thinning of fingernails

Stress incontinence - I had a catheter in place for 5 weeks

Nerve damage - Loss of sensation & pain in my lower leg & foot, affecting my mobility

Thanks for reading!

[Sepsur]

hair loss is really common - it’s called telogen effluvium - basically your body/brain in trauma redirects essential nutrients to major organs, nails & hair aren’t essential for life 😊. So all our hair goes into same cycle, not revolving hair loss and renewal which you rarely notice. For most people it grows back fully. I used to have coarse hair, it grew back much finer & softer.

Time to do all those pelvic floor exercises - ask your physio what would work best for you with the various weaknesses that you are experiencing now. I had catheter for about 12 weeks - even leaving hospital a month later, needing a pee meant ‘right now’.

you may find your neuropathy improves over time - nerve damage mends ( if not beyond salvageable) at 1mm a day. After a year, most of the weird numbness, pins & needles etc had gone.

If you get cramping - I found magnesium sulphate worked for me - you may have specific vitamin & mineral deficiency after ICU - some will affect conductivity of nerves, how well muscl s rebuild etc etc 💙

the link below takes you to a useful info page 😊

cc-sn.org/information

[Deb244 in reply to Sepsur]

Thanks so much for the advice. It feels good to know I'm not the only one, lol. I've always had really straight hair,but it is starting to curl!

[ElleEmBee]

No, not alone. I was in ICU for 125 days and in hospital for total of 305 days. Got sepsis following cancer op. Nearly died. Put in coma then I got sepsis again, multiple brain bleeds, multiple organ failures, internal bleeding, a blood clot, a super bug and severe pressure sores. Hair all fell out. Growing back curly and absolutely wild. Nails are atrocious. Can’t walk without frame and need carers. Been home five months. Learned do stairs a few months ago but still really exhausting. Got PTSD from ICU stay, all the dreams and experiences. Got fairly bad peripheral neuropathy in both feet and sides of legs. Left hand pretty rubbish and has neuropathy too. I think the neuropathy affects me the most cos it’s just constant shifts between numbness and extreme pins and needles drives me absolutely nuts.

Take care. People tell me to be gentle with myself but I’m not. I’m super cross with my body and I’m not sure how that will change anytime soon. But do try the gentle thing yourself lol.

[Deb244]

Thanks for replying, you've really been through it! The neuropathy is a killer, feels like hot needles stabbing me, & I get a burning sensation in my calf. My hair loss is hitting me hardest, my hair's the only thing I ever get compliments on!

I'm very frustrated with myself, but trying so hard to be patient

[Lux95]

For me it was a month in ICU in the US with 3 types of pneumonia - sedated and intubated, then trach: I can't remember the week before I went to the emergency room, 6 days in the ER before being sedated, and have only a couple of fuzzy images of the 4-5 days waking up.

The top of my right leg from my hip to below the knee was numb for weeks, and some of the numbness still comes and goes a year later. Nerve damage seems common, but temporary (I also had double vision for 2 months due to cranial nerve damage in one eye). Psychological and emotional effects are very common. Take it a day at a time, and be patient. Working daily to rebuild your strength will help, but it will all take time. It's been a year for me, and I'm still not 100% and may never be. But that's ok. Just surviving what we've been through is a great gift!

[Deb244]

Thanks for the reply. You're right, we are very lucky to have come this far, considering the alternative!