A strange journey

I've had so many nurse home visits and I feel like I am being really looked after. The NHS isn't in as bad a state as I thought. My blood pressure has returned to normal now but it doesn't look like I will be back to work any time soon. Still very shaky. I'm having good days and bad days. Sleeping about 5-6 hours a night. As I am on so many meds, I bought a pre-paid certificate otherwise it would cost a fortune. I still cannot thank my partner enough, she is amazing looking after me. I do feel like a invalid and get tired very quickly.
 
How is your fitness? Are you able to walk around?
something daft already!! said:
I've had so many nurse home visits and I feel like I am being really looked after. The NHS isn't in as bad a state as I thought. My blood pressure has returned to normal now but it doesn't look like I will be back to work any time soon. Still very shaky. I'm having good days and bad days. Sleeping about 5-6 hours a night. As I am on so many meds, I bought a pre-paid certificate otherwise it would cost a fortune. I still cannot thank my partner enough, she is amazing looking after me. I do feel like a invalid and get tired very quickly.
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My mobility has improved vastly since being discharged. I have to have an angiogram which sounds fairly unpleasant. Getting phone calls from the hospital and doctors quite a lot. I think my condition is very interesting to them considering my fairly youngish age. Just spoke to a consultant which freaked me out a tad. I just want it to be over now. Had enough now.
 
something daft already!! said:
My mobility has improved vastly since being discharged. I have to have an angiogram which sounds fairly unpleasant. Getting phone calls from the hospital and doctors quite a lot. I think my condition is very interesting to them considering my fairly youngish age. Just spoke to a consultant which freaked me out a tad. I just want it to be over now. Had enough now.
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The angiogram isn't to bad to go through as I had one done last year. It's when the doctor holds onto your wrist at the end, that's the uncomfortable bit, as they have to keep pressure on the incision.
 
something daft already!! said:
Not sure if it will reoccur there is a possibility. I'm on anti seizure medication now. I'm pretty vague about some stuff but I think my memory and intelligence is getting better. I've got an iq of 135 but while in hospital I did a basic test. I had to think of words starting with f I could only think of 2 draw a clock, it was a scribble and link numbers to words and I was basically moron. I scored 1 out of 5. This is improving all the time now. I was able to cook me and my partner steak tonight and it was up to standard. I think my skills will return. I have another MRI scan in August.
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And they still have no idea what went wrong? A close person to me is a top top neurologist and I mentioned this to her and she was interested in hearing what tests and medications they gave you before putting you in a coma. She said its bizarre they had absolutely zero idea as they should have suspicions but said frankly that plenty of Klinik mess up the tests they are meant to do, and that not all antibodies for encephalitis are detectable anyway. She was curious when the kidney failure started.

She said the struggling with the clock test this is a rather common one (she gave me an example of a clock that a patient drew which was hilariously bad). The fact you're on the mend is excellent sign.

I don't want to dox myself or her but if you feel the hospital was incompetent (or at least not specialised regardless of giving good service) maybe could try and arrange something if you felt uncomfortable with the lack of prognosis.
 
Orangeade said:
And they still have no idea what went wrong? A close person to me is a top top neurologist and I mentioned this to her and she was interested in hearing what tests and medications they gave you before putting you in a coma. She said its bizarre they had absolutely zero idea as they should have suspicions but said frankly that plenty of Klinik mess up the tests they are meant to do, and that not all antibodies for encephalitis are detectable anyway. She was curious when the kidney failure started.

She said the struggling with the clock test this is a rather common one (she gave me an example of a clock that a patient drew which was hilariously bad). The fact you're on the mend is excellent sign.

I don't want to dox myself or her but if you feel the hospital was incompetent (or at least not specialised regardless of giving good service) maybe could try and arrange something if you felt uncomfortable with the lack of prognosis.
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I was given multiple medications. They basically threw everything at me until they got it right.
Fentanyl, anti-seizure meds, not too sure about the rest, things are a bit hazy. I'm on about 5 different things now. My partner sorts it out for me as I'm still not quite myself yet. I have calcium Carbonate tablets, Lacosomide, Lansoprazate, Prednisolone, Melatonin and Levetiracetam. I had 5 blood transfusions as my Kidneys were failing. Therapeutic plasma exchange. They were trying all sorts of different meds. It was the anti-seizure meds which allowed them to take me out of the coma and I stopped having seizures. This is what I have been told, my memories are pretty vague and mainly hallucinations. I have headaches most of the day to which I take Paracetamol which helps.

Even now, the real world to me doesn't feel quite real every now and then, almost like this is a dream and I died in hospital. It's very odd indeed. I was hoping to return to work in August but I don't think this will be possible quite yet. I am making progress but I keep forgetting things and have to be told a few times. Other things though I'm very good at, I can remember complex processes, my general knowledge is good, I score well while watching The Chase for example and I am able to play the odd game here and there, I even got some kills in BF2042. My hands shake almost constantly, so it's still hard to type, I make silly errors like added too many letters to words. I have had to edit this a few times to get it right.

They suspected either a low grade glioma or encephalitis. I'm having more tests next week and have been invited to take part in an experimental iRehab study which there are about 400 people doing it across the country which I have agreed to.
 
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something daft already!! said:
I was given multiple medications. They basically threw everything at me until they got it right.
Fentanyl, anti-seizure meds, not too sure about the rest, things are a bit hazy. I'm on about 5 different things now. My partner sorts it out for me as I'm still not quite myself yet. I have calcium Carbonate tablets, Lacosomide, Lansoprazate, Prednisolone, Melatonin and Levetiracetam. I had 5 blood transfusions as my Kidneys were failing. Therapeutic plasma exchange. They were trying all sorts of different meds. It was the anti-seizure meds which allowed them to take me out of the coma and I stopped having seizures. This is what I have been told, my memories are pretty vague and mainly hallucinations. I have headaches most of the day to which I take Paracetamol which helps.

Even now, the real world to me doesn't feel quite real every now and then, almost like this is a dream and I died in hospital. It's very odd indeed. I was hoping to return to work in August but I don't think this will be possible quite yet. I am making progress but I keep forgetting things and have to be told a few times. Other things though I'm very good at, I can remember complex processes, my general knowledge is good, I score well while watching The Chase for example and I am able to play the odd game here and there, I even got some kills in BF2042. My hands shake almost constantly, so it's still hard to type, I make silly errors like added too many letters to words. I have had to edit this a few times to get it right.

They suspected either a low grade glioma or encephalitis. I'm having more tests next week and have been invited to take part in an experimental iRehab study which there are about 400 people doing it across the country which I have agreed to.
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Just reading that without the ICU part of it is scary. It makes some of our medical problems like a walk in the park. I'm glad you are feeling up to gaming a bit. Like we say, one step at a time even if it's only a baby step sometimes.
 
something daft already!! said:
My hands shake almost constantly, so it's still hard to type, I make silly errors like added too many letters to words. I have had to edit this a few times to get it right.
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And still your spelling is better than that of half the folks on here ;)

All the best for your recovery there bud. It sounds like it was a pretty damned harrowing experience :eek:
 
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