Meningitis Now
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My mum (72) died from pneumococcal meningitis.

My mum had what she thought was a cold for almost two weeks and said she was "getting better". Two days later mum first complained of an earache. I took her to GP immediately and the GP diagnosed her with an ear infection (16/5/15) in BOTH ears and sent her home with oral antibiotics and ear drops. GP told mum that she might vomit also, this is "common" with ear infections. Half an hour after seeing dr mum vomited and thought nothing of it, and went to bed. It was 11pm. The next morning (before 9am) when I checked on her, she was paralysed on the bedroom floor with "locked in syndrome" and I have no idea how long she was on the floor. At hospital they suspected and diagnosed bacterial meningitis quickly (given her condition and the detailed information about her GP appointment I had given). However mum suffered an aneurysm 40 hours later as a complication and we were told it was best to turn off her life support as the CT scan showed significant brain damage. Fast forward, it is 3.5 months later and I am struggling with the circumstances of her passing in addition to her not being here. i feel so terribly guilty for letting her sleep, I wake at night often and always relive that night. Why did I miss her stiff neck, she did have her eyes closed in the GP waiting room, these were signs. Why did the GP send her home and not suggest she go to Drs if she started vomiting at any stage? Why didn't I take her when she vomited instead of trusting the dr? I struggle with all this. There seems to be a lot of support out there for meningitis survivors but not for families of the deceased? My mum was my best friend. I live in Australia. Any advice would be greatly appreciated.

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I meant......Why did the GP send her home and not suggest she go to HOSPITAL if she started vomiting at any stage? Why didn't I take her when she vomited instead of trusting the dr?

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Don't blame yourself. I had meningococcal septicemia with DIC. When I started flu symptoms (with shaking), I thought it was from work stress. I went to bed and a few hours later I called for an ambulance because I lived alone and couldn't stand the EXTREME pain in my legs any longer. If I were still married, I think I would have asked my husband to give me 2 Excedrins and some flu nighttime medicine so I could sleep.

My point is that if I didn't know I was in severe trouble, how in the world could YOU have known that your mother was.

Please don't blame yourself.

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Hi, thanks for your reply. I'm glad you knew to call an ambulance for yourself. Most people in my everyday world have never heard of meningitis, they all ask me what it is. They seem to know a little about meningoccocal (in which case they associate this disease with children only) and not much else. I have researched a lot in my quest to find answers. I'm not sure at what stage my mums ability to think clearly or make decisions for herself was diminished. Even with the GP mum might not have accepted his diagnoses if she was of 'sound' mind. I can only conclude that when an adult comes down with meningitis they rely on others around them to make decisions on their behalf, much like children, they become so ill because their brain is affected, that they cannot think rationally although from the outset they appear only physically ill. (This is where I feel so much guilt). Until they might speak in confusion may the seriousness become apparent. I am just astounded the GP sent a 72 year old lady home by herself at 10.30pm of all times, with a severe ear infection without warning her of possible complications. thank you again for replying, I feel very alone dealing with mums illness. I hope you have not had to deal with many of the long term or lifelong complications. Thanks again and so genuinely pleased you survived. Mel

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I am so sad for you. That is very very unfortunate. GPs know a little about a lot and it must sometimes be hard for them to accurately diagnose. However, in those cases they really should send the patient to a specialist or to a hospital, not send them home.

I too had bacterial meningitis. Although I'm a neuroscientist and probably should've known better, I stayed at home with fever of 107 - 109 degrees for four days before my husband over-ruled me and took me (literally carried me) to our GP.

It is very difficult for someone to know how an illness will progress. Even professionals get it wrong sometimes. You must not blame yourself for your mother's death. What we all can do is to learn from our experiences.... listen to your body and listen to what others say about their own health. And act swiftly if you are concerned. Don't take advice unless it is qualified and even then it's often best to get a second opinion.

I too live in Australia and went through the worst 8 months of my life fighting the hideous effects of bacterial meningitis. Even now, two and a half years later, I'm still unable to live anything like a normal life with incessant pain in my head. What I'm trying to say is that even though I'm a neuroscientist and know a lot about the brain, I didn't realise just how sick I was. Don't blame yourself. I know it's a 'buzz-word' now, but try doing some meditation. If you're really feeling low, talk with a therapist/psychologist. Get some support - you will come out of the other end of this sadness.

Shan x

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Hi Shan, thank you so much for replying. I am so glad your husband dragged you to your GP (and happy your GP was knowledgable). Thank goodness. I really do believe the locum GP my mum saw was rushing to finish for the night as mum was likely to have been his last patient. How he dismissed mums fever (she would have had one at that stage) and severe ear infection in both ears as not requiring immediate intervention astounds me. The ICU doctors did say that they were surprised that the GP didn't, at the very least, suspect mastoiditis and get her to the hospital based on that. If GP had have touched/placed slight pressure on the area behind mums ears, in their words, "she would have winced in pain" and this would have indicated the ear infection was not isolated and had spread. Knowing al this now does not change the outcome. I feel like I let mum down very badly as I was her 'last chance' for survival. She was otherwise fit & healthy and her funeral was held on the day she was due to fly to Adelaide for her much anticipated "Ghan" train ride with her best friend. She was 72 and was still living a full life. I robbed my children of their nana (they were 21 months & 3) so while I will keep her memory alive for them they won't remember her. My just turned 2 year old has only recently stopped calling out 'nana' whenever the phone rings and that's sad but inevitable I guess. Being a neuroscientist I'm comforted by your words and reply. You might understand the levels of your treatment. In hospital, did you get administered with a steroid/s with your first dose of antibiotics?

I understand at 72, mum would have stuggled with any side effects had she survived. I just can't believe her 'cold' got to that stage. What I ommited from my post is that mum had an appointment with her family Dr 3 days before she first had the ear pain. Mum was at her Dr for a regular check up, blood pressure test and blood test. Her family dr did not check her ears at that appointment, when I went back to that Dr to ask, she said mum appeared well & the dr had no reason to check her ears. Perhaps the ear infection would have been evident then, and thus might have changed the course of history. The meningitis would likely have progressed despite the oral antibiotics however, when she became ill I would have taken her to a hospital, not GP. No point revisited what has already been done.

Thanks again for replying and for reading. All the very best and I hope that your headaches subside and your quality of life improves. Mel x

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Hello Mel,

I'm so sad for you and your family. It must be terrible to bear the loss of your mother at her relatively young age.

I didn't say in my earlier email, but I too was misdiagnosed. The first doctor said I definitely had meningitis and gave me IV antibiotics, but when I my own doctor saw me the next day, she said I had pneumonia and pleurisy (which an xray confirmed). She then treated only those and ignored the meningitis for a further 3 weeks. It is very likely that her having ignored the worst of my illnesses that I have such terrible after-effects.

I wasn't given steroids at any stage.

I hope that you will find ways to deal with the loss of your mother. The first of those will be to rid yourself of the guilt. It is NOT YOUR FAULT. Please step back from that feeling and allow yourself to remember the good times in your mother's life.

with love,

Shannan

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Hi Shannon,

Thanks again. I am so surprised by your reply, how in the world did a dr diagnose your meningitis without a lumbar puncture (or CT scan)? I am presuming that despite the first Dr giving you the correct diaagnoses, the tests weren't performed or conclusive hence the second dr deciding on pneumonia & pleurisy treatment? thats scary and yes, the delay in treatment for the meningitis resulted in the disease progressing, causing all sorts of problems for you. I'm sorry to hear that happened. Is it possible Drs delay antibiotic therapy and don't take worst case scenario approaches when patients present with possible meningitis because the IV antibiotics are expensive? I am interested in your views given your qualifications.

I've heard that with BM a course of steroids with or just before the first dose of IV antibiotics has been shown to reduce swelling and complications of the brain such as possible aneurisms and strokes. hence my question.

Thank you again, really appreciate your reply.

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I doubt that prescription of IV antibiotics in possible BM depends on cost. In my case, my husband found out later that the locum doctor and my own doctor have an ongoing feud which is most likely what led to my doctor feeling she needed to over-rule the diagnosis of the first, locum. We'll never know...

Shan

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That's terrible, but I do believe that could happen.

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I am so sorry for your lose. My husband recently narrowly escaped passing away in a very similar way. Fortunately they admitted him to the hospital for a pneumonia and dehydration instead of sending him home, but it wasn't until three days later, when he was near death, that they did a precautionary spinal tap and found the meningitis. They were never able to diagnose the type because of the antibiotics he was on for pneumonia. Then they sent him home on oral antibiotics and within three days he was near death a second time. I took him back and the oral antibiotics weren't working. My story could have ended similar to yours but for fate. You cannot blame yourself. We rely on our health care providers to have the skills they should have, but they are only humans when it all comes down to it. Please forgive yourself and hold to the great memories you have with your mom. I know she does not hold anything against you. I am praying for healing for you.

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Thank you for your reply. So glad your husband was where he needed to be. I wish my mum had have had a cough or chest issue that may have resulted in her being on antibiotics, the absence of this meant she thought she just had a sinus virus & never suspected a bacterial infection. I commented on another post a few days ago telling a poster that they should get checked out again if they have been released from hospital and still feel unwell and here is your comment of the same nature. please continue to tell your husbands survival story, especially that the meningitis was still present after discharge. It may just save someone's life.

All the very best to your husband and thank you for taking the time to reply.

I am just taking things a day at a time. It's hard when no one can relate to me. Everyone understands death by stroke, heart attack, cancer etc. everyone seems to think mum died from some mysterious illness & they can't offer much by way of conversation about it. Mel x

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I'm so sorry for your loss.

There is no way you could have known. We all trust our doctors. Sadly they let you down.

It might give you comfort to know from someone who has had meningitis (viral). I had no idea how sick I was and carried on going to work.

I also lost my mum suddenly 3 years ago and I too went over and over why she died and wished I had persuaded her to go to the doctors. it's part of the grieving process.

You never get over the loss but you do learn to paint a smile on and somehow it eventually begins to help.

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I'm so sorry for your loss. I won't ask you how you feel 3 years on as 3 years seems so far away for me and I'm afraid that everything will still feel raw. I spoke with my mum every day and saw her 4 times a week, we were very close and loved each other's company. My father died 11 years ago, he had a cancerous brain tumour and so my mum did the best she could on her own, keeping busy and spending time with her family. The reason I explain is because this all gives me more reason to have been in a position to intervene somehow and help mum. I actually thought her family dr cleared her of anything serious at a dr appointment 3 days before she got sick. I visited the family dr after mums passing and the dr apologised that she did not check mums ears as mum appeared healthy!! Mum was let down by two Drs in the space of the 3 days, she saw a dr on Wednesday and then Saturday evening and was in ICU by Sunday morning.

I'm glad you recovered from VM and hope you never have to experience it again.

Mel x

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Hi

Firstly I'm so sorry for your loss...we only have one mum.

Having read your story I wanted to get in touch ...a similar experience

Dad passed 8 years ago

My mum was ill , feeling under the weather this time last year after a night out , she was 68 years young

She felt unwell , her GP said it was a winter bug and dehydration

4 days later her condition deteriorated we phoned an ambulance

She was admitted to hospital to the high Dependancey unit , the hospital diagnosed pneumonia..she had no cough but had a fever and was hallucinating

Three days later she was a little more lucid and for the first time complained of ear ache , we informed the medical staff, no action was taken

She didn't know how to use a spoon or drink she was that confused

The next day she was transferred out of HID and taken of IV antibiotics

Mum deteriorated rapidly in the next few days ,despite our family raising concerns the hospital staff did nothing

She was admitted to ICU after nine wards in 9 days (disgusted) by this time she had irreversible brain damage

The damage was done

Mum died 14 days after being admitted

The lumbar puncture was carried out on day 9 , apparently this is the first test that should have been carried out on admission

Since speaking to the admitting doctor since mums passing he admitted he did not perform a lumbar puncture as he carried out physical test for meningitis, however he did say if he could go go back he may have done things differently

I like you torture myself, could I have pushed more, would the outcome be different?

We were I thought in the right place , took the advice of medical staff and the system failed us

I don't blame anyone as illness is tricky and humans make mistakes (I wouldn't like their job) but I do wonder would they treat their own relatives in this way ?

9 wards in 9 days

I had so much respect for the health service , too much I feel

We are not doctors , we diagnosed mum ourselves on the internet and asked the question, brain infection?

To which we were told highly unlikely...possible stroke ( before diagnosis)

Shocking

So my words to you would be ...you couldn't have done anymore you took the advice like us and respected the information that was given( what more can you do)

You did all you could, we did all we could

I am however appealing for retraining regarding recognising bacterial meningitis/septicaemia from the GP attending to the hospital staff

I hope this helps you

I also beat myself up every day, could I have done more?

I feel I let mum down but I'm sure our mums would not want us to think like this ...I am trying to come to terms with this

Much heartfelt sympathy

D

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Hi Deedee,

Thank you for your message. I'm sorry to hear of the loss of your mum and you are right, we only get one (or two in some families), and mums love us unconditionally. It is hard to accept their passing.

It is even harder to accept under certain circumstances and I completely understand your frustration, the hospital staff let your mum down and your family. My experience is that the ICU dr's 'play god' in many instances and this is further exasperated (perhaps inadvertently) because they become so desensitised and complacent. In life we often hear about complacency, I really do believe many dr's do become complacent and the medical profession is not an industry for complacency.

In your mums case there were so many red flags, these should have been blindingly obvious to those trained in the medical field. Absolutely, dr's are human however, 9 days is surely an adequate and lengthy timeframe to warrant further testing, instead they took your mum off IV antibiotics? Your mums age, unfortunately, also places her in the highly susceptible category for bacterial meningitis.. (Another red flag).

Thank you for your kind words. I will always feel like I didn't do enough, as you perfectly stated and like you, I placed my trust in the dr's, that they would be proactive in her treatment and care.

Thank you for your message. Again, I'm so sorry for your loss. You are right though, our mums wouldn't want us to carry such a burden. I'm glad you are spreading the word on BM.

Take care, Mel 😌

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