Hi all,My husband whom I found unconscious 3 weeks ago has been treated in critical care. He has now been moved into a ward and although some progress has been made it seems to have stalled, even stopped. The staff have said he'll need a lot of time and the outcome is uncertain.
I just feel its hard to walk through these dark days without hope and wonder has anyone got any advice or been in a similar position?
Many thanks
God through Jesus Christ was our hope when my wife got meningitis. Every circumstance is so different but He is sufficient for all. 3yrs on my wife now doing much better, nearly fully recovered. Very grateful for that. I hope you can get support.
Hello Newham1
Having hope & faith has to be your daily mantra. Having come through 5 weeks in hospital with near fatal meningitis myself. My family feeling what you’re going through now. One year on & we’ve come a long way, many setbacks & difficulties but the future looks bright. ‘Meningitis Now’ is a very good & knowledgeable organisation, do use the helpline offered there, they are able to help in many situations.
Sending you & your husband best wishes xx
Hi, my son had meningitis in january 2024. he was very ill. in coma for two weeks, and 4 months in the hospital. Now he is very good, like normal. have faith. it takes too long but it is possible.
I had bacterial meningitis 9 yrs ago. My husband found me having a seizure and took me to the hospital. I was diagnosed with BM and I have little memory of what took place. I recovered with hearing loss, pain and balance issues. I understand that it could have been much worse. I am blessed to be alive! With God’s grace your husband will recover. It is not an easy road and it is important that he take it slow. Keep the hope & faith. I will remember you in my prayers.
Dear Runnerma
Thank you so much for this, its wonderful to know there are others out there that have walked a similar path( that no one should have to walk down) and again this is giving me hope at a time when I feel maybe I am losing some positivity. Thanks for the prayers, I really appreciate that xx
I can only lmao with the constant mention of religious garbage. When I was battling cryptococcal meningitis my mom said she would pray for me. I laughed and told her to waste that crap on those that will believe it as her mythical POS god is a joke in my world and nothing more. Only belief I have is in myself as that never let's me down.
Road to recovery will likely be quite involved. I pushed myself to make progress every day to the point of walking out of the brain injury wing less than 1 week of being literally dragged in as I couldn't do much without assistance, along with permanent profound deafness, etc. Also be aware that the treatment necessary can be as rough as the illness itself. Be patient with his recovery as no doubt there will be ups/downs mentally and physically.
HiThanks for your comments. At the moment( 3 weeks in) have one " good " day where he seems to understand and squeeze my hand etc and I come away from hospital brighter, and then the next day minimal response( sleeping?) So I do then go on a complete downer.
I know I need to be patient, at the moment it is tricky to keep going , keep positive and so I do welcome this advice. The consultant did say at the start I would need a lot of patience and I lost track of that a bit.Also your comment about good days and bad days- a good reminder for me.
Thanks.
No doubt that's concerning... we all have variation in recovery, response, etc. When I was 'finally' admitted (delayed due to ridiculous healthcare oversight) I had no short/long term memory, couldn't walk on my own, was going deaf, lost taste/smell, had facial paralysis... but once the fungal infection was finally found and aggressive treatment started I recovered rather quickly. They seemed blown away that within a day or so I was sitting up, eating on my own, communicating and asking why in the hell I was gonna be stuck there more than a few days. Has been 6 yrs for me now and I have to live with permanent side effects as nerves rarely regenerate even close to what function they had before the brain injury. Over time you just learn to deal with changes and maximize what you can still do. Hope he recovers at a faster/more predictable pace, but yeah no doubt it is seemingly slow at any rate.
The staff have made every effort to lay down the worst case scenario( permanent disability etc) which has been difficult to hear but I m not daft and know there will be something.I'm glad that you have made an OK recovery- seems that you are not the same as before but managing?
I hope so!
Great way to describe it... in all honesty many survivors will call it getting used to a new normal as life as it was before is a fading memory. Main adjustment for me was getting used to being profoundly deaf and the tinnitus/pressure from it. No known fix either, just have to adjust. Decreased balance, endurance, patience is my everyday as well. Regardless of what life throws at me I won't be phased after surviving this debilitation. My outlook is you either adapt to roll with what life throws at you or get rolled over by it. It is good that his care team is at least being honest and the thing with meningitis is it varies drastically from one person to the next. Far from textbook statistics sums it up and most in Healthcare just don't know much about the disease in general. Seems misinterpreted for the most part.
Actually ,I think you are bang on about medical staff....Heard him.being called " The menningiris guy" " never seen this presentation before " etc.I'm picking up it was q bit exciting for them , a novelty even. I'm not blaming the staff they've been brilliant really and I understand they have a job to do, but you are right they just don't know the outcome.
My hubby does seem to hear me to some degree, and that's great.
I just need to infuse myself with your positive attitude, for me and him.as well.
Thanks somuch for your story and your advice x
Yep kinda the same thing with me. As even in the brain injury wing some had been in Healthcare 30+ yrs and never treated cryptococcal meningitis. Even Infectious Disease was like 'cryptococcal, wow yeah it's been quite awhile...'Absolute best treatment is a positive mindset. Yesterday in general was a typical reminder of the damage done in my inner ear area. For no noticeable reason the tinnitus/pressure flared up like a fighter jet taking off in my ear canal. Affects balance, concentration, you name it. No known fix for it either as I have been tested at various levels. Being deaf would be much more tolerable if it was simply silent, but this is far from it. Good luck and keep us posted when you have time/energy.
Hi, 7 years ago I contracted bacterial meningitis at 11weeks pregnant with my 2nd child. My husband found me unconscious on the living room floor. I was flown from our local hospital to a stroke hospital in San Francisco. I was on life support for 2 days. I had two mini strokes, sepsis, pneumonia & a blood clot in my brain. The doctors said it was Bacterial Meningitis complicated by Cerebral venous sinus thrombosis. Today, I can say I have a healthy 7 year old son. I was only left with a blind spot on my right eye which I wear glasses now. I feel very blessed. And I went on to have a 3rd child after. He is healthy too. Sending you lots of positive thoughts. It was a very emotional recovery. Have hope.
Ashley
Dear Ashley,
Thanks for your reply, I do feel I am a bit dependant on theses amazing survival stories right now as they combat the doom and gloom scenarios that hit ne from the doctors every time I go into hospital,
My husband is now talking, and moving all 4 limbs ( Albeit weekly on the left side) which are huge positives although he seems to be receiving minimal rehab,
I've settled into a routine of daily visits and do his mouth care, leg exercises etc but I will have to go back to work soon so not sure how things will look after a few weeks Reminded by the last comment to keep positive and hope for the best and continue to try to do that as it does seem to be so important.
Wonderful news about your recovery, so pleased about that, and of course it is helping me to stay positive!
xxx
Your welcome. 🙏🏼 Sending lots of hugs during this time.
I lived ,I had meningitis when I was 17. I am now in my 50's. It is possible. My thoughts are with you.
Allow me to be your hopeful post for today. Almost exactly 2 years ago on Christmas my husband found me unconscious after being terribly sick for several days. They also found it to be bacterial meningitis, in my case strep pneumo. I remained comatose in the hospital for the next 4 to 5 days. After that point, I started to respond and had what I thought to be more normal interactions with people. But as people described to me now, consisted of me staring at them and not doing much talking. I also took a turn for the worst 2 to 3 weeks into things at which point doctors found I had contracted a viral infection, unrelated, but forcing my body to fight yet something else. At this point, drs via an MRI found brain abscesses which required 3+ months of IV antibiotics (keep up the constant probiotics because I’ve had gnarly problems with thrush and candida due to all the antibiotics). They were certain I would have brain damage. I do not. But, like others who have who have posted, I went deaf in one ear and lost 70% in the other and have tinnitus, so make sure the doctors are keeping an eye on his hearing because they didn’t even bother testing me for hearing loss for weeks, they just assumed my confusion during conversation was due to brain damage. I spent a month in the hospital doing major rehab rehabilitation, relearning to walk, etc. But the other primary complication I encountered was sepsis which ended up causing severe blood clots all over my body and landed me back in the hospital a week after discharge (the first time) with a pulmonary embolism. I didn’t show the traditional signs of blood clots like swelling or anything like that, mostly because I was in my late 30s not my late 80s! I feel like that was the thing that required a lot of extra recovery because the sepsis combined with the meningitis physically disabled me so much. So I think that could be the discouraging aspect for your husband when the time comes- feeling so physically limited. I had bad vertigo, but that improved overtime as I kept up with physical therapy. we would go to the shopping malls and walk laps every day, just like elderly people do. At the time I had a nine month old baby so I would hold onto the stroller to help me walk around, now I am sitting here holding my one year-old baby and the only thing limiting me physically is lack of time because I have a toddler, and a baby, along with my 6 and 8 year olds.
Try to focus on what you have rather than what you’ve lost, count your blessings. I definitely echo the religious sentiments that were shared. I am a dedicated Christian and have been all my life, and it was my Savior Jesus Christ, who carried me and my husband through the valley of the shadow of death.
I recommend sitting with your husband and reading to him. That is what I what I wish someone had done with me. To help break up the monotony of the hospital and steer my thoughts in a more interesting way than just being stuck. Read to him from whatever book it is that You are reading. If nothing else read the Bible out loud to him, I’d start in the book of John. It can be as much a comfort to you as to him. It will give you something to look forward to going to the hospital, other than being with your husband, of course. And give you something to do besides waiting around for updates from the doctors and stay upbeat for your husband.
Talk to him hug him be with him. Don’t underestimate the value of those things.
As soon as I send this reply, I plan to pray for you and will continue to do so in the days to come. “I would have despaired unless I had believed I would see the goodness of the Lord the land of the living. Wait for the Lord. Be strong and let your heart take courage; Yes, wait for the Lord.” Psalm 27:13-14.
Good Morning!
Thank you for your reply and advice. Reading the posts here gives me such a lift. Like you, my husband has had a strep pneumonia infection, which they say was extensive and severe. As I've maybe mentioned, he has had a run of a few days where he has been talking( mostly mutterings , but also making some sense) and has been lifting all 4 limbs, but very weakly, especially on the left side.
I think his case is similar to another lady who posted as he has had some infarctions( strokes) causing the medics concern about how much recovery he will make. I believe these are part of the whole problem and were caused by the swelling and infection in the brain causing blockages.
Yesterday he was sleepy and unresponsive. He didn't really open his eyes much and when he did he looked depressed and said " I'm really F^&%ed"
When I came home from the hospital I did feel really low, lonely and frightened for the future. People around me have been so supportive-really great , but of course everyone is falling into their own normality as time marches on. I did feel extremely weepy and sad yesterday but at the end of the day, being like that wont help me and it really wont help him.
My positives are- amazing friends and family, supportive colleagues, don't have to worry about money just yet, and I am trying to do a couple of short swims a week
I do read and re read the comments here, especially regarding the slow progress, needing time and above all keeping positive, which I am really trying to do.
I have also taken on board from cryptococcal ninjas posts that outcomes vary and are often unpredictable and surprising.
I will take a book in and read to him, a great idea.
I also wonder about visiting? I have been visiting daily with my daughter, and try to arrange another visitor to go in the evenings, say 3 x a week- Is this too much? I would be grateful for any advice on this.
Thank you so much Agapelmh, I am so grateful and happy to see the replies and posts here which are honestly keeping me going xxxxx
,
Honestly, family members took shifts so that there was someone constantly with me, at least all of visiting hours. Then when I moved floors, someone stayed overnight too. Only once or twice a day were “visits” where one or two friends or relatives would come that would require more engagement. Also, it wasn’t until I was nearly discharged that my husband brought my 6 year old daughter along. Otherwise I saw the 3 year old and baby boys once via video chat. I think he did that more for their sakes than mine. They were just too young to understand all that was going on. So, at least from my perspective, I don’t think you can overdue your visits because it is comforting to have someone around who knows you, loves you, has your back, who you can trust, and who is not just there to take your vitals. It was reassuring to have someone around who knew the real me not the meningitis me.
OK that's great, thank you!His friend went in this morning and said he was talking a fair bit, so this news lifted me!
I'm going in soon with another of his friends for an evening visit, so I'm being driven there today.
I think the different visitors may help his brain stimulation?
Anyway it's so nice to hear and re read your story, I am glad you are doing well.
Just to also say, I have taken some of his quickies magazines in, have been reading a bit to him, so will also keep doing this.
Trying to hold on to the positives, as advised on this forum, which is helpful .Thanks again xxx
Glad to hear. Was he more of a morning person or night owl before all this? I don’t consider myself a night owl but I have never been a morning person. I definitely remember more from the afternoon and evening visits and I was more alert and aware then, whereas in the morning, I was always drowsy! Something to think about for whatever time of day you visit him.
Also, yes to the sleeping thing- I saw you write that in a separate reply. That is particularly why I mentioned the reading to him thing because I had weird dreams that were repetitive and didn’t make much sense. That’s why I wished I had someone reading to me to help channel the thoughts for my dreams to pleasant things that wasn’t just nonsense. 🤷♀️ So read even if he is sleeping because it makes it so he has something to dwell on other than the hospital monitors screens!
This makes so much sense! I feel he is maybe starting to orientate a bit and it is confusing and noisy for him, I do feel he is in and out of dream like/ limbo states and that's reflected in some of the stuff he says.In a few days I will put a new post up and explain his progress, as you guys have been a bit of a lifeline for me!
Seemed to be chatting more naturally yesterday so thats great, not seeing much of physio input, I think they see him 3 x weekly.
Will he just maybe start to move more as his brain settles anyway I wonder?
Thanks for ALL oc the support xxx
Also, he is probably on a TON of medications which could be impacting his cognitive ability. The physical progress will come… It will be very slow, like painfully slow. Help encourage him with every little progress you see. Honestly, the fact that he’s alive is nothing shy of miraculous!
I don’t know how accurate these stats are but I did some intensive internet searching during my recovery and BM tends to hover around a 25% mortality rate, but when someone reaches the unconscious state mortality jumps to around 60%! So count your blessing that he is alive.
Hello again!I do feel that you have a point about mornings as my husband was / is never really a morning person.
He is chatting more each day, but a lot of it is rubbish, which worries me, but it's still progress which is positive.
The physios are pleased with him and report that he is physically improving day by day.
My grown up children and both here for Christmas which is wonderful.
I'm trying, really trying to develop patience and focus on the positives but at times am consumed with worries about the future.
Hard not to I suppose, this forum is helping so much
Xxx
I had BM 6 years ago was in a coma for 2 weeks then along recovery had to learn to walk again had alot of brain fog my balance wasn't good but with patience and time i got through it .It won't be easy but with the love of family and friends i am sure he will get through it hope he as a good recovery we are lucky we are still here ❤️
Thanks, Shameless, I really do appreciate the advice and replies here. Hubby was in a coma for 2 weeks, now on a ward. They do say that patients like him have to "sleep it off "As this is the way that the brain recovers, but then I do feel I have to wake him just to talk so that I can stimulate his brain with chat and ask him to move his hands etc.
Not sure if I'm doing the right thing?
Do you mind me asking how long it took you to recover, to the level you are now? He does have so much love from people around him, a completely popular and lovely guy, I just hope he keeps fighting for himself.
I do have to remind myself about the patience bit.
Thanks again, so much for these comments and the advice, they are helping so much xx
Also keep in mind, surely you already are, but he will need to develop a ton of patience dealing with his changes. I responded quick to aggressive antifungal treatment and was ready to go home in less than a week, but that was the tip of the iceberg of what was in store as I required daily treatment over 2.5 yrs just to get rid of the fungal infection. Took A LOT of patience and determination doing my on rehab getting this body to function like I was used to. Being deaf, couldn't walk on my own, could barely write my name, couldn't smile/blink, taste or smell. I have mentioned various parts of this and of course every single case varies. Dunno what all has been addressed, but be sure they check his vision as well as hearing often. Damage done to optic/cochlear nerves is usually permanent as those areas rarely regenerate. Also, recovering from meningitis usually causes extreme tiredness, emotional roller-coaster/impatience due to tweaked nerves, etc. Just no textbook way to address it, kinda live and learn each day taking baby steps to recovery. You read like you're on track to do whatever is needed.
Hi Crypto,
Thanks for above. Think his brain is now trying to reorientate. Yesterday was a lot of confused mumblings but he thought he had taken acid so I guess that kind of made sense. He knew that his head wasn't right. He wanted " to get out of here" and so I said as soon as he could walk and eat he could come home. He didn't realise he couldn't walk (which was sad( as you say, the impatience and the frustration setting in) but still it does show some progress so the down days are lessening. Thanks so much for the info you are passing on- cant do without you all at the moment
I have had three bouts of BM, 2 very serious with induced coma which resulted in 3 weeks in hospital and the third I preempted having learned the warning signs ( a very bad earache was the first indicator) two years ago I had brain surgery to mend the small fissure where they thought the infection was entering my brain. It was a complete and wonderful success. The two serious doses left me with temporary issues all of which, 6 years on, have gone apart from not being able to cope with numbers(!), and a slight misalignment of my left side, eye, blocked nose, hearing. I am writing this to give hope to those fearing the worst. Please believe you or your loved one will recover. When able, he or she should pay attention to diet, exercise as much as possible, think of others before themselves and their woes but belief in the power of the body to survive and overcome issues is the top of the list. I am unbelievably lucky and I know this. I personally thank God every day. Good luck to all fighting this wretched illness
Thank you for such a hopeful post!Coming up to 6 weeks post admission now, progress has been made but not mobile yet, still a lot of brain confusion just have to hope that this part of the recovery will come along eventually.
The small hours in the morning are terrible for the worry and anxiety!
Thanks gor taking the time to reply, I appreciate all of the comments and replies here xxx
Hang on in and have faith that you’ll have your husband back. Keep believing in him , give him small achievable targets, take in lots of photos and talk about things he loves!
I was discharged from hospital on 21/11/24 after having bacterial meningitis and the main thing that got me through my recovery was the strength of my family and friends. It gave me my motivation to get better because even though I knew my parents and partners hearts were breaking to see me in such an awful state they stuck by me, they never doubted my recovery and I think the fact they never doubted it made me feel that I could beat anything.
I know it’s so tough for you but your strength will give him strength. I am praying for his recovery x
Hello Hammers10!Really appreciate your comments- this is timely for me as staff discussing longer term rehab options.
One unit quite far away so I have limited visiting options, one nearer me so can visit more but may take longer for a bed to become available.
Cang help feeling it's really important to keep up the visits and the contact as this is what people seem to report as the thing that keeps them going.
Not sure what to do gor the best, difficult to trust the process.
Did you have a long recovery, Hammers?
Any rehab?
Thanks again for these comments, the posts always boost me when my positivity is dipping xxx
Also have taken on your comments about staying strong and positive for him- you've reminded me of the importance of this!
I completely empathise with your comments….. I have four daughters, one flew in from Australia the day I went into ICU and spent all day every day with me and the other three did a rota of visits. I knew how much they loved me even when I didn’t recognise them!
Bacterial meningitis 
Bacterial Meningitis 
Bacterial meningitis
Bacterial meningitis sufferer 
