A strange journey

[something daft already!!]

This is not a medical thread, but an attempt of an account of the last 7 weeks of hell I have been through, I just wanted to write it down somewhere. As I love OCUK, I thought it would be OK here. If it must be deleted, then so be it.

Some of you may have noticed I have not posted in a while. On the 3rd of May, I was at work, doing my usual thing, support stuff. Sitting in my chair, suddenly and without warning, I collapsed to the floor saying help me. I have no memory of this. I was told this by a colleague. I then fitted for 20 minutes while an ambulance was called. Again, no memory of this. I have never had a fit in my life before this. This was totally out of the blue.

Next thing I know, it is six weeks later and I am bought out of a coma after being sedated. I can't remember where I am and what happened. I was all alone, apart for the ICU nurse assigned to me that day.. I thought no-one knew I was there and I was all alone. Then my partner arrived and I am thrilled to see her and she me as up to this point I had been unconscious. In reality, she had been there every day at the bedside and looking out me, she is really an amazing person. Memories of this day (2 weeks ago now) are pretty vague. The fits had stopped at this point. They thought I was going to die in the first few weeks, but I recovered. They said I was the sickest person in ICU. They write an account of you stay there and I had 2 booklets as I went through so much. I was sedated and every time they tried to take me off it, I would revert to fits again so was sedated again. I was attached to a breathing machine and had been poked and prodded and had needles stuck in me. I was put on dialysis as my kidneys started to fail.

They thought I was going to die and had prepared my partner for the worst. They thought if I did recover, I may have lost the ability to speak, think etc. I was very lucky as all I am suffering from is extreme weight loss and shaky hands, I lost around 3 stone and am having some difficulty typing. I think my memory is messed up and my hands shake a lot now, mostly due to a very heavy dose of steroids.

When I came to, I had no idea what had happened, what I did for a living, but I was still me. My partner explained every thing to me. I had strange hallucinations where I had been kidnapped(not by aliens), when in reality, I was being treated by Drs. It took me 20 mins to write a 2 line text as I kept making mistakes and had to delete and rewrite it but this improved over time. This is probably a jumbled mess as I am still not quite myself yet.

I am home now and recovering well. They were amazed by the progress I have made. I was not ready to die yet. We plan to get married now and live together. We emptied my flat and I have bought everything here now. Things seem to be looking up but I am still worried it may happen again.

I came out the other side of this. I am far more emotionally aware now and more emotional in general.

They don't know what happened or what the cause was. All I know is I embrace life like never before.
I hope this makes sense and does not have to be deleted.

 

[something daft already!!]

jesus, sounds like you were a lucky boy. any idea what caused it or is the medical investigation still ongoing?

They thought it was some strain of Encephalitis but tests showed negative but there are 13 types and they may have been too late to test for some. I am very lucky, I know this. If I was working from home that day, I'd be dead now. If my boss had not reacted so quickly, I'd be dead. If my lovely lady had not been there every day, even though I was not aware she had been, I may have given up. But she was there for 8 - 10 hours day, telling me she loved me and I was safe.

I was given that drug that is sweeping the US, Fentanyl. I would not recommend it to anyone. It messes with your brain in a nasty way.

If allowed, I could post a photo of me in ICU.

 

[something daft already!!]

Me a few weeks ago.

 

[something daft already!!]

That is incredibly frightening. Glad you made it through. How old are you if you don't mind me asking?

54

 

[something daft already!!]

How's the anxiety of you don't mind me asking.

If you don't have any relapses do you think you'll(long term) see it as a positive? Like a life wait up call?

I'm worried it may happen again but now I feel I want to live life to the full. As life can be far too short and stuff can happen at any time and without any warning. I have learnt a lot from this and I feel I am a better person for it. Much nicer to people and I realise how much I am loved.

 

[something daft already!!]

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.

 

[something daft already!!]

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.

 

[something daft already!!]

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!!]

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.

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.

 

[something daft already!!]

Good to hear things are improving - scary stuff.

btw - what size boots are you?

I'm a size 11.

 

[something daft already!!]

Just about to have a angiogram. It does not sound at all pleasant.

 

[something daft already!!]

They made it sound worse than it was. Not too bad.

 

[something daft already!!]

Do they still apply loads of pressure on where they inject the dye? My Dad had to have these super regularly a few years back, and they injected it near the femoral artery and then pretty much sat on it for 20m after.

Yes they did, that was the most uncomfortable part.. My hip is still aching from that. I had to lay flat for an hour afterwards but they forgot and left me there for 2. I had to be in bed for 4 hours in total after it. I also didn't eat the night before as I wasn't told anything about it. I found out when we got that I could have done! I was most annoyed and starving. They rushed it through as the letter giving more info would have arrived 2 weeks after my appointment.