Meningitis Now
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My Dad in a Coma in ICU.

He is 66 y/o fit and healthy before this.

We don`t know what type of Meningitis it is and he`s very sick.

He`s receiving good treatment but his temperature is around 40c & a GCS reading of 7.

His heart, kidneys and lungs are are all fine. If he does pull through this then I don`t know what type of person we`ll get back. They thought it was a stroke at 1st but then diagnosed Meningitis. This happened on Sunday 15th September & he`s been on ICU for 4 days now. Can he make a recovery. I`m just frustrated that he`s still not responding to antibiotics & i`m powerless to help.

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oh honey so sorry to hear what you and your dad is going threw, have they told you what type of meningitis it is? my thoughts are with you :)

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Hi Gary P.

I was 54 when I contracted Bacterial Meningitis & Septicaemia in May 2011. I have no memory of that day or at least 5 months before. I had a GCS of 5 and was near to unconscious then my GCS dropped further. I was in a coma in ICU for 3 weeks and like your dad initially they thought it was a stroke but scans showed frontal lobe abcesses and cerebritis. The exact strain of Bacterial Meningitis was never diagnosed as lab samples 'got lost'! My temperature like your dads was extremely high and didn't eventually settle until another 2-3 weeks after I came out of the coma and was on High Dependency Wards. My recovery has been long and slow which is as expected when you've been so seriously unwell with Bacterial Meningitis. Even my G.P surgery and my lifelong friend who was acting as next of kin were told it was most likely I would die or be mentally and physically handicapped. But I defied the odds and am still here to tell the tale! No I haven't come through it without sustaining some permanent damage. I have frontal brain damage which gives me problems with executive function, memory, emotions etc. I also may have complex partial seizures. I have balance problems and prone to falling but I can still walk and my balance has improved but I will never completely recover. Everything is affected by fatigue which is more mental fatigue when the demands and pressures are a lot for me to manage now. Although I have not been able to return to work and do struggle more to manage day to day life and my home, I am still a single mum doing an ok job at still managing independently to raise my son. I have had to try to come to terms with accepting that I have to do things differently now and have limitations with what I can manage but hopefully I will get there in the end. At the moment I still do have practical and emotional struggles, which when your life has been turned upside down and changed in an instant through no fault of your own, I think is not out of the ordinary and to be expected.

Your dad is clearly seriously/critically ill and no two people's illness will follow the same route. Bacterial Meningitis and its outcome is not predictable and not even the Dr's will know for sure what the prognosis will be. My own experience is an example of that! However the fact that he is in ICU and the medical support has happened quick enough so that his heart, kidneys and lungs are still working fine is positive at the moment. Somehow you have to stay positive and take each day as it comes. It would be easy to let your thoughts run away with themselves and think that the outcome is going to be extremely bad because maybe some strength within your dad will enable him to physically fit back for survival and a life still worth living. I am aware that some people have been in coma's for longer that me and they made it through the nasty BM. The coma is sadly only the starting point as recovery is then usually expected to take years rather than weeks or months. If you click on my name you can read my profile which I thinks has other bits of info re my experience.

Do keep blogging and let us know how things are going. This is a wonderfully supportive site - well it has been for me once I got the courage to use it! It is the place to come to find others who understand and can help through there own experiences answer some of your questions an worries. It's good not to feel isolated and alone. The MT Trust also have a wealth of information and various ways of helping and supporting too.

My very best wishes to your dad and you.

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Hello Gary,

So sorry to hear about whats happening,but know that there are lots of people here who can support you.Do let us know how your Dad is progressing.

I had bacterial meningitis and septicaemia in 2008,at the age of 42yrs and like strawberry cream and your Dad was in a coma.The coma is often medically induced,to give the body a rest from having to breathe itself,while fighting the disease.Sense of hearing and touch are still present when someone is in a coma,so do talk to him,play music- he will know you are there,even if he cant reply.

Try just to take one day at at a time and not think towards the future too much.Whateverhappens,your Dad will be supported.God bless and do let us know how he is doing?

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Thanks everyone for your support.

They took him off sedation yesterday and he failed to wake up or respond. After 12 hours of no sedation then he wouldn`t respond to commands like squeeze my hands or dad its me.......The Dr said this is slightly worrying as even without sedation his GCS is 8. I was very upset yesterday as when the nurse shinned the light in his eyes his pupils or eyes didn`t move. He became agitated through the night so they re-sedated him again. He did respond to pain though.

I have this mad flower power type shirt that my dad hates so i`ve put it on today so if he wakes up i might get a reaction...Can only hope!

I couldn`t speak to him for the first four days as i`d start crying after 4 or 5 words. I managed yesterday to start speaking to him and to tell him whats going to happen. I`ve told him that he`s going to get better and see all his grand kids who adore him. I`m going to take him for a good curry when he wakes up and he`s going to come to Disney Land in Florida with my family and our little boy. I`m going to tell him this all again today and be really positive about our future and his role as a grandfather.

They think it`s Bacterial because of how aggressive it was so quickly.

If he does recover then i`ll support him 100% along the way and i`ll make sure he gets better. Fair enough that he might have a few problems but he`ll still be my father and friend.

When the ambulance brought him into Resus then his GCS was 3. Were lucky as the ambulance only took 4 minutes but the ambulance paramedics said it is defo a stroke, but even they were wrong. Part of me is thinking would he have been better off with a stroke as Bacterial M is really bad. Before this happened i just didn`t understand how nasty a bug this is.

It`s another day today and the roller coaster ride that our family on will continue but as the days go by then i`m becoming stronger and more adamant that this bas~~rd of a bug isn`t going to destroy our great family.

We will get my dad back and we`ll work with him so he`s got a good quality of life. He`s still going to be a fantastic granddad for my son and he`ll continue to take our dog for walks and enjoy football and having a drink with his mates.

He`ll just be a slightly different person but then again it might not even be Meningitis, it might be another bug.

Your going to listen to me today dad and wake up........

Thanks everyone. x

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Hang in there GaryP Its just a waiting game my Mrs had 30days in ICU Extremely ill on life support they tried a few times to wake her up with no success at first

eventually she very slowly woke up and then she had no memory of anything her Arms didn't work at all

she had no idea who we were or where she was or what had happened

through Dr advice we got some 7x5 Pictures printed with family on them and there names i added on the pc to help jog her memory who people were.we posted them around the bed.

another thing we did and at this time Gary it may not be something you will want to consider now but we did 2 ICU Dairies (Drs asked if we could do it.we said yes)

we wrote in it everyday for weeks detailing what happened everyday 2yrs on its the best thing we did the Mrs has a written record of what happened and reads them on a regular basis it gives her answers to many questions she has

it will be a long journey be strong you'll probably find when he wakes up there will be lots of problems with mobility memory confusion bed bound etc etc our Drs were / are very good even today 2 yrs on

one of the biggest things with waking up the memory confusion etc etc its all just a waiting game for it to get better improve All the Best

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Hi GaryP. During the 3 weeks I was in a coma several times they reduced my sedation to see if I would come out of the coma. But I just became agitated apparently and they had to sedate me again. While the machines are doing the work and in a coma this allows the body to fight the bugs rather than exhaust itself keeping the vital organ eg breathing going. A neurologist eventually decided I was perhaps having Sub Clinical fits, although this was an assumption rather than any visable sign of me fitting, and so he started me on anticonvulsants and apparently shortly after that I started to come out of the coma. Like for Dene's Mrs my friends were asked to write in a diary every visit. This has proved to be so helpful for me as it is the only thing I have that provides a portion of memory for that time. Likewise my visitor were advised to sit and talk to me which they did and although I have no recollection of this because of my memory loss it is possible at the time I was hearing there voices and it helped pull me back to the living world. It is so hard for you all watching, waiting, hoping and feeling devastatingly distressed with the not knowing. But the length of the coma does not necessarily relate to the severity of the damage as it is allowing the body to fight the bugs and have greater chance of degrees of recovery. Your dad could come out of his coma but his recovery will be a long long journey. When people come out of coma's it is not like on the TV soaps where they suddenly wake up and rapidly able to know who's who and do stuff. It is usually very gradual with considerable weakness and confusion. I had post traumatic amnesia and was confused, muddled, did not recognise my son at the age he was then, plus had double vision, couldn't hear well etc etc. Try to take each day as it comes rather than predict how you think it might be. Give your dad time, it is not just a cold or flu his body is fighting. Note the positives - his GCS has come up from 3 to 8 (My GCS dropped to 3 when in A&E but look I am now able to be blogging back to you). And cry all you need to as that is healthy expression for you! Good luck and keep us posted.

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Hi GaryP,

I had Meningococcal Meningitis plus Septicaemia with complications of DIC. I called an ambulance because of my EXTREME leg pain.

When I awakened from a coma in the ICU, a dr was there. He said, "You have BM & DIC but you are responding to the antibiotics. However, you need to know that there are 4 aftereffects that could still happen to you. You could:

1. Lose your sight

2. Lose your hearing

3. Remain paralized

4. Have brain damage

I heard the dr but the only concern I had at that time was that I wanted the EXTREME pain to stop! I had had visitors (immediate family) but I had absolutely no memory of their visits. My family later told me that I never responded to them in any way.

Now here's the really weird part:

The next day I didn't think I was really in a hospital. I was going thru a divorce (my idea) and I thought I was actually in a warehouse somewhere and that my husband was trying to make me appear to be incompetent...so I never told any of the "actors" that I knew the truth. Cra-zy...but I mention this to show you that your father, upon awakening...MAY be completely irrational...and PRETEND to believe everything you say to him.

A few weeks later, I completely understood everything and just wanted this horrible illness to hurry up and get thru my body so I could get back to my WONDERFUL life! (I was VERY happy before the morning I came down with BM.)

Now, 35 yrs later the only after effects I have are non-throbbing daily headaches and painful feet. I can't wear heels because of the pain...but that's OK. I can still move like someone half my age (I'm 69) and perform in many theatrical shows. (I even performed in a dance troupe on national TV on America's Got Talent!) Because of the after effects, I have to work harder than everyone else...but that's OK.

Your father can still have a rich full life...just give him some time.

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hi gary

i was reading your words and it bought all back yet again

i will not bore u with it except to say i was reading strawberry creams reply to you and mine experience was a carbon copy

please just take it slow one step at a time

mine took place on 23 November 2003 started with pain in my legs to

close to ten years on and i am still fighting it i lost my hearing the ability to stand up on my own also told i would never walk again

but i am still here falling over a lot now on crutches lol

all the best to every one here and just keep gong and don't let it keep u down

Gary i am sure your dad will get there

all the best to you and him it is hard for the family it was for my wife and kids

but dont rush

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Guys,

My Dad briefly woke yesterday as they stopped his sedation. He opened 1 eye and i put my finger in his hand and said if you can hear me dad then squeeze my finger and he did. This was like Christmas day as a child and the whole family were really positive........

Also yesterday they gave us a diagnosis.......He had a CT scan yesterday and they believe it now to be Encephalitis rather than Menenigitis. But, the Dr said it is really just a best guess. I`ve been reading up on the new diagnosis and i don`t know whats worst. They had to give hime more sedation through the night as he got agitated and his BP went very high.

Today i thought he was going to come around again but when his Seds were reduced again then he was unresponsive. I`m going beack into see him again now but now realize that this is going to be a very slow process.

The 1st milestone yesterday was him squeezing my finger and we`ll just look for more milestones each week.

Were also writing a diary every day so him can join the pieces when he wakes up.

Anyone have any experience of Encephalitis?

Thanks

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Hi GaryP. That's good news - another positive sign that he opened his eyes and squeezed your finger. Don't be despondent that it didn't happen again the next day as his body needs lots and lots of rest to keep on fighting the bugs. I apparently did a similar thing in that one day I opened my eyes briefly when some close friends were visiting but then didn't again over next days. Eventually when I did start coming out of the coma the wakeful moments were very brief and even when I did come off the ventolator I continued to sleep for much of the day and night. Even now 2 1/2 years on I still struggle with tremendous fatigue and frequently have to rest and sleep during the day. You will cope better now that you are realizing that it is going to be a very slow process. Best wishes to your dad and all of you supporting him.

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StrawberryCream,

Thanks for the good wishes above. They are now starting him on different antibiotics. Were getting to the point where it`s quite apparent that the hospital don`t know what bug it is. Although, they have now found something called Haemophilus in his bloods. He`s still not responding too well so they are going to do an EEG on him this afternoon. How long do the anti-biotics take to work? As his temperature is still pushing 40c after 8 days.

They keep sedating him and they are taking about doing a tracheostomy as he`s gagging all the time with the tube in his mouth.

G

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Hi GaryP. You have written some more similarities. I continued to spike very high temperatures during the 3 weeks I was in a coma and for a further 3 weeks after I had regain consciousness. The hospital never managed to identify the bug that caused my BM but the did diagnose Bacterial Meningitis & Septiceamia because of the septic blood results and the scans. The swab was apparently lost on route to the lab and I had a sky high BP so they couldn't do a lumber puncture. I had quite a few changes of antibiotics during that 6 week period. I also started off being ventolated via my mouth and then had a tracheostomy. This was apparently because it would be more comfortable for me and easier for them to try and wean me off the ventolator. I am told, (my diary my friends kept confirms this) that in my confused, agitated, comatosed state, that at one point I caused an emergency situation because I pulled my tube out and apparently I had many Dr's round me as they had to get it put back in very quickly! It is good that they are doing an EEG as the opinion about me having Subclinical fits that were maybe what was stopping me coming out of the coma was based on a Neurologists assumption. There were no visual signs of me fitting and they didn't have the facilities to do an EEG at my local hospital and I was too seriously ill to travel to Kings in London to have the EEG done. Eight days is still early days as that's what it can take us to get over flu. You must continue to be patient Gary and take each day as it comes as Meningitis or Encephalitis is far more serious and recovery from this critical state takes a lot more time. I share my experience with you hoping it will help you understand that it is not the sort of illness that responds and recovers in days. Keep strong and positive for you dad. More best wishes to you all.

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Hello. read your thread and wanted to give you some hope.. and urge you to be positive . I my self have had 4 cases of menincocal meningitis in my life time , the lastest was 2 years ago when i was again hospitalised and in a coma . i am realistic as to say it a horrible illness and i understand the horrid effects of such a case .

When i last left hospital my balance was horrendoes memory was almost gone and head aches continues for almost a year or more and i guess still suffer from them .

The reason i say is to have hope is that i was sceptical of any inprovement but i gotta be honest after a year or more i did see improvement and every day things seem to improve slightly, all be very slow.

I genuinely hope things turn out and have faith as every day can be a positive step forward..

keith

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Hi GaryP, How is your father doing? I really hope he is doing better. I can't help but get reminded of my dad when reading your story. My died had flu like symptoms and was taken to the hospital and misdiagnosed with a brain stem stroke and his temperature was never taken. More than 24 hours after he got to the hospital an infectious disease doctor diagnosed him with bacterial meningitus and not a stroke. He was then given antibiotics but it was too late and the meningitus had already reached his brain. He was in a coma for 8 months and then passed away. I hope this are better with your dad :)

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