Curious about life 15 months on for others

[Jillybills]

Hi, I’ve been loitering here for a while. My story was I had a left lung white out pneumonia in nov 2019, was in icu for 42 days 3 weeks sedated and ventilated and then trach and weaning. Husband was told to expect the worst 3 or 4 times....but I pulled through. Severe muscle weakness, both feet dropped and significant neuropathy in my feet and lower legs. My question to you all is how we’re you physically after 15 months? I can walk unaided at home and with a stick outside.. still using a bath lift to get in and out of bath, still need a stick and rail for the stairs. Have little stamina...takes all my time to vac and I need a sit down after! I also get very tired in the day and often sleep for 2 hours in the afternoon. Just wondering if people had similar stories or if I should be more “better” now?

[FamilyHistorian]

Hi Jillybills

I was initially admitted mid November '19, caught pneumonia in hospital and suspect heart attach. Sent home and within a few days readmitted with pneumonia, sepsis and rapidly failing aortic valve. That was replaced just before xmas and I came out mid march having spent nearly 2 moths sedated and ventilated. I also had a trachy. I had / have neuropathy in both legs and feet. It is getting better but I have little feeling in my feet so only know if I have stubbed my toes when I see them bleed. I didn't get any physion until early June and that was through ICUStepsChester. I haven't progressed as well as others in the group although for weights I satrted with small cans of peas and now I use between 1 & 1.5 kg. I have to be careful moving around te bungalow as my balance is crap. utside, when I go out, I use sticks. I get out of breath - I have been decorating and find that I can emulsion one wall or paint 2 door sides in a day. I wont sleep in the afternoon as much as I would like to. I also have discovered I know have pulmonary fibrosis caused by one or all ICU trauma, pneumonia or one of my arthritis drugs.

We are all different so it gives you an idea of where I am.

[Sepsur]

Hi @Jillybills and welcome

I was told whilst in ICU / it could take me up to 10 days for everyday I was in ICU to recover from this ordeal.

I think measuring yourself against where other people are at a certain point isn’t always that helpful- you are where you are.

I have also found it is far more helpful to look at how far you have travelled as opposed to how far you have to go.

If you feel as if you aren’t really improving anymore - maybe you need to do more to increase your strength & stamina.

I joined a support group that now does everything on zoom. The lessons have helped me immensely- it’s free and I meet others that have been the same - some of them are a bit down the line 😊

[8SofMB]

Right now its been 5 years since my illness, strength can come back after 12 -18 months, stamina, in my experience will take longer. I found that for a long while I just didn't have any stamina when I ran out of energy it was gone instantly with no warning with no reserves to draw on. Eventually you get better at recognising when you are doing to much and take a rest, it is a very gradual improvement. I know it hard but be patient. Try to think about how much better you are now in comparison with how you were 6 months ago.

[Abbas1 in reply to 8SofMB]

Hello,

I am 27 years old. I’ve had brain tumor surgery, because of a surgical complication i stayed in the icu for almost 4 weeks mechanically ventilated, and then 2 more weeks in the ward, its been almost two months since i left the hospital at first i could barely sit on the bed now i can walk independently but everything has changed and feels different as if it was a dream still, i have balance issues while walking will the ataxia ever go away? Will i ever be normal? Even driving is different i feel like everything is going fast.

I also have hair loss and my senses are not as the used to be hearing and smelling are weaker. My vision has changed one eye became farsighted and the other eye became nearsighted which makes me see blurry if i see with both eyes open. The neurosurgeon told me the surgery could affect the way your eyes move temporarily which i am experiencing as well. I also have persistent numbness in both hands and feet. Can anyone tell me if they experienced similar things? Will they ever go away?