Pneumococcal Meningitis

[Nicolab123]

Hi, My dad was admitted to Whipps cross hospital on 2nd Jan after mentioning flu like symptoms on Saturday 30th Dec - he went to work and come home which is unlike him. He hasn't had a sick day in 17+ years. He stayed indoors, resting and barely moved from 30th - 1st. My mum said that he complained of a headache early hours of 2nd morning and then came to bed. She left him for work around 8am but he wasn't in agony with a headache just said he would call the doctors. He just isn't the type to complain or be off work - he's never ill. I was off work that day and heading over to their area anyway so said I would check on him and make him some lunch. He didn't answer the phone all morning but we know from looking at his phone later that he tried to call the doctors around 8am and again at 11am. My Mum didn't feel right that he wasn't answering the phone (we thought he could be asleep but always normally answers the phone) and went home to check on him about midday, I arrived soon after and he was in the bathroom not with at all. He could move around but was extremely confused and couldn't speak, it was like he didn't know we were there. We thought he had an awful fever or perhaps dehydration / a water infection that was making him confused but we called the ambulance straight away and tried to cool him down to relax him although he wasn't very feverish looking back now. We got him to the bed and he was so restless and uncomfortable but kept pointing to his back and his neck but couldn't say anything. It took over 2 hours for an ambulance to arrive. I said on the phone to the operator could it be meningitis quite a few times - it didn't feel like they took it seriously enough and kept saying how busy they were but "reassured" us that anyone higher priority than my dad was in cardiac arrest. We could have never have got him to a&e ourselves. The paramedics arrived and did some tests, they said they thought it was a bleed on the brain and blue lighted him to whipps cross where he went straight into resus. They treated him with antibiotics for possible meningitis there as we'd metioned the back and neck pain but they did confirm there that it was a sub arachnoid bleed and even said he was number 4 out of a 1-5 scale (I can't remember the explanation in any detail). He was transferred to the Royal London as they are neuro specialists. We were told that he needed to have a drain on the brain (I'm unsure of the name) which happened early hours of 3rd morning and he still has this in on day 5. He was taken off sedation at 6am on 3rd but was still really drowsy and not with it. He was moving and his eyes were sometimes open but not doing anything on command. On 4th he was quite restless and his chest wasn't very clear so they put him on a nebuliser and also gave him something to calm him down. They said he responded to commands overnight and yesterday was an amazingly positive day - he was furiously biting the ventilator tube and obeyed commands to the doctors so they took it out and took him fully off sedation. He almost looked liked himself again with no tubes. He was amazingly responsive and seems and it seems he can hear and understand everything. He basically leant up to shake someone's hand, pouted his lips and leant up to kiss my mum, he passed wind and we all laughed and so did he but he wasn't speaking - we put this down to having the tube in for a few days and his throat being sore and it looked like he wanted to. They moved him to HDU this morning (6th) which we were very pleased with. We arrived this afternoon and they were taking him to have another CT scan as they said he hasn't moved his right side but he was doing this yesterday. They said it could be temporary and just want to check this out and also look to see if there is anything as to why he isn't speaking. I know it's still early days and 5 days feels like 5 years we just expect so much of him as he is the strongest most positive and determined person. Does anyone have any experience or advice on a similar situation? We are hoping and praying he makes a full recovery with no after effects and yesterday made that feel possible but today feels unsure again. We lost my nan under a year ago and I'm getting married in 3 months time 😓

Many thanks,

Nicola

[bobbyvere Volunteer]

The best advice I can give is to phone the Meningitis Now helpline today - they are so good at offering support and helpful advice at times like these. I know - I have geen there and recovered fully from pneumoccal Meningitis ten years ago. You and all your family are in my thoughts.

[Nicolab123 in reply to bobbyvere]

Thank you that is helpful to hear. I have been meaning to and went to call this morning but realised it was Saturday.

[Jackiemerritt22]

Hi i had this (pneumococcal meningitis) in may off this year i was on a ventilator for 11 days in ICU was woken up finally after many attempts on the 11 day i then spent a further 7 days in isolation before being sent home. I had to have a second smaller tube put in as i had an oedema in my neck when i first spoke it sounded like i smoked a million fags a day. i also got a secondary infection from my central line a fungal infection. But i didnt have a brain bleed as well like your dad had, what i can tell you is that i have never felt so weak in all my life it took over 3 days before i could even get out off bed and then it was only for a few minutes in a chair and for weeks after my whole body felt like it weighed a ton. It sounds like your dad is making great progress and i hope this continues but 7 months on i still have lots off issues deafness in one ear (common side effect) balance issues cluster headaches joint pain much worse than before and it has also made my Rheumatoid arthritis much worse i have problems with memory and recalling words also my temper is very short now and my hair fell out. if may help if you keep a diary the one thing i have a major issue with is that i dont remember anything apparently i called 111 and they sent the ambulance my partner just thought i had bad flu but i do not recall anything from 3 days prior to calling 111 to being woke up even then i was nutty for the full 3 weeks i was in there had very strange thoughts thought they where trying to kill me loads off just mad stuff. So he may have a lot off question about what happened. I really glad he is doing so well and hope him a speedy recovery

[SHS7]

Hi Nicola,

My mum had Pneumococcal BM late Nov. She did take a good few days to come round properly and said she can’t remember the first 3 days after she gained consciousness. During those days, she was finding it very difficult to speak, one word answers if any. Very spaced out. She had some delirium (doctors said from the swelling in the head and also the sepsis) and couldn’t remember my name and was uncharacteristically very rude to my dad and brother.

I would say on the 4th day after waking up (she was unconscious for 3 days) she was getting back to normal and found her speech again, but she spent a further 3 weeks in hospital.

As others have mentioned call the charities for some guidance and reassurance, I found this very helpful. One great analogy given to me; if you fall over and twist your knee, your knee is going to be very swollen and you won’t be able to walk on it for a while. You have to wait for the swelling to go down before you can tell what, if any, lasting effects you may have. The brain has been through a major trauma in the same way and everything is still settling down in there. Give it some time to recover (easier said than done, I know).

Best of luck x

[sdjohnson231]

I spent about a week unable to speak while at the worst of my bacterial meningitis. My family tells me that I acted alert with eyes open, but couldn't respond verbally. I have no recollection of this. My short term memory was also lost during this time. I just woke up one morning and started talking again, not understanding or realizing that I had not been doing so for several days. Best wishes for your father's recovery. Susan

[Stace30 in reply to sdjohnson231]

That was the same as me, I didn’t talk for a while either its a huge thing and takes time ay🤗

[gb93616]

That all sounds very similar to my situation. I was 44 in 2008 when I got meningoencephalitis. I had an issue with my side, it was a "stroke lie event" as they termed it. Basically the symptoms of a stroke, but without actually having one. In my case it was almost learning to walk again. I could speak initially, or read, it was a bit confusing. But it all corrected itself. I couldn't remember people's names and called my Wife "The Lady" when the nurse asked me if I knew who she was, something she never lets me forgot.

The brain is a wonderfully complicated thing and can heal remarkably well from trauma.

Don't let him over do things, take it easy, it does take time. Expect fatigue. It took me 5 months to return to work, although after about a month I felt almost normal. The headache hung around for about 2 months.

Every case is different, but in my case it was a slow but steady recovery from something I was luck to survive.

Graham

[Britosborn]

This is so sad but happy at the same time. When I went from the regular hospital to the rehab I couldn’t pronounce certain things as well as I could not make facial expressions. As the antibiotics started doing their job I gained that back. This is not the exact situation but somewhat and he may gain it back as the antibiotics work

[Nicolab123]

I'm so pleased to say my dad has made a remarkable recovery and came home today after just over 2 weeks! Can't thank the staff at Whipps Cross and Royal London hospitals enough. Thinking of anyone battling this awful disease and any after affects x

[SHS7]

Really pleased for you, there is nothing more scary than watching this happen to someone you love. Hope he recovers well.