Care I got whilst in hospital

[ragsrule]

Just before Easter this year I was admitted into QEQM Hospital in Margate suffering from Confusion and strange behaviour. I was tested for loads of things. Bloods were taken and it was suggested I be admitted as I clearly wasn't acting normally! I was put onto a high dependency ward with 24/7 visiting. My husband sat with me till the early hours and as we lived locally made lots of little visits through out the day and night whilst I was in Margate hospital.

 

They ran loads of tests, did CT scan, MRI scan, Lumbar puncture which I apparently kicked off about! You name it, I was tested for it. They thought at first it might be a mini stroke but ruled that out. There was an abnormality on my brain scan. Can I point out now that I didn't have a clue what was going on. I don't remember anything what so ever.

I didn't even know my husband or Sister! I Was really very ill and for the first few days they didn't know what was wrong with me. I wouldnt and couldn't eat anything as I couldn't swallow, My husband pointed out that he thought I was having bad headaches because of how I didn't want my forehead touched, I always wanted the curtains around my bed closed to keep out the strong lights. I refused all fluids so was put on a drip, given various types of vitamins & meds for my pain.

 

I am Disabled through having M.E. and Fibromyalgia anyway so as I couldn't swallow any of the meds and had to be given them intravenously, that is until I started pulling them out! I wasn't able to control my bladder so was often soaked through till they decided to put a nappy on me! Finally they diagnosed Viral Encephalitis, (An infection on the brain) my brain had also swolen.

The morning of Day 4, I was moved to The Kent and Canterbury hospital, in a neurological ward. I was given a very strong antibiotic called Acyclovier, sorry not entirely sure of that spelling!

I had further scans, Electrodes attached to my brain and further electrodes attached to my wrists and ankles as I had a tremor in my right hand, plus I kept getting spasams in my hands and my leg would just jump for no explained reason, these keep happening to this day!. Still my memory was very vague, I thought I knew who my husband was but a lot of confusion was still present.

 

The Doctors and Nurses were first class. They looked after me very well. I was kept in hospital in total for 15 days. On the afternoon before I was discharged some long awaited blood tests came back. I also had lots and lots of small blood clots over the brain, they weren't anything to do with the Encephalitis, but every test imaginable was done to rule everything out!

 

I now have to take warfarin for a further 6-8 months at least! I have been left feeling very tired all the time, have excruciating headaches 24/7, they can't rule out a connection to the Encephalitis and my Consultant has warned my husband that I musnt be left alone for any length of time as he also can't rule out that I won't get it again!! The first signs of confusion and he has to call an ambulance!

My memory is pretty poor from having M.E & Fibro but it's even worse now I have memory lapses constantly throughout the day, forget passwords that I have been using for years, do things and then forget I've already done it I cannot stand for more than 5 or so minutes before my legs wobble and I fall. I cannot walk more than a dozen or so steps before my legs go from beneath me! I suffer a lot of pain due to my disabilities and the added limitations are so very frustrating!!

 

Viral Encephalitis is a very rare illness, at one point my Doctors couldn't even tell my husband if I would ever recover as I was that i'll. But thankfully with the Love and Care from my Husband, and the Wonderful care I got in hospital and am still getting as an out patient. it's a very long road but I am getting there. I will always have added problems to my health but at least I am alive!

Edited October 1, 2015 by ragsrule
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[honeybee13]

Hello there.

 

You have been through it haven't you, I hope life improves for you from now on. When I saw your thread title, I thought it was another complaint, it's really good to see the system worked the way it should for you.

 

HB

[BazzaS]

Just before Easter this year I was admitted into QEQM Hospital in Margate suffering from Confusion and strange behaviour. I was tested for loads of things. Bloods were taken and it was suggested I be admitted as I clearly wasn't acting normally! I was put onto a high dependency ward with 24/7 visiting. My husband sat with me till the early hours and as we lived locally made lots of little visits through out the day and night whilst I was in Margate hospital.

 

They ran loads of tests, did CT scan, MRI scan, Lumbar puncture which I apparently kicked off about! You name it, I was tested for it. They thought at first it might be a mini stroke but ruled that out. There was an abnormality on my brain scan. Can I point out now that I didn't have a clue what was going on. I don't remember anything what so ever.

I didn't even know my husband or Sister! I Was really very ill and for the first few days they didn't know what was wrong with me. I wouldnt and couldn't eat anything as I couldn't swallow, My husband pointed out that he thought I was having bad headaches because of how I didn't want my forehead touched, I always wanted the curtains around my bed closed to keep out the strong lights. I refused all fluids so was put on a drip, given various types of vitamins & meds for my pain.

 

I am Disabled through having M.E. and Fibromyalgia anyway so as I couldn't swallow any of the meds and had to be given them intravenously, that is until I started pulling them out! I wasn't able to control my bladder so was often soaked through till they decided to put a nappy on me! Finally they diagnosed Viral Encephalitis, (An infection on the brain) my brain had also swolen.

The morning of Day 4, I was moved to The Kent and Canterbury hospital, in a neurological ward. I was given a very strong antibiotic called Acyclovier, sorry not entirely sure of that spelling!

I had further scans, Electrodes attached to my brain and further electrodes attached to my wrists and ankles as I had a tremor in my right hand, plus I kept getting spasams in my hands and my leg would just jump for no explained reason, these keep happening to this day!. Still my memory was very vague, I thought I knew who my husband was but a lot of confusion was still present.

 

The Doctors and Nurses were first class. They looked after me very well. I was kept in hospital in total for 15 days. On the afternoon before I was discharged some long awaited blood tests came back. I also had lots and lots of small blood clots over the brain, they weren't anything to do with the Encephalitis, but every test imaginable was done to rule everything out!

 

I now have to take warfarin for a further 6-8 months at least! I have been left feeling very tired all the time, have excruciating headaches 24/7, they can't rule out a connection to the Encephalitis and my Consultant has warned my husband that I musnt be left alone for any length of time as he also can't rule out that I won't get it again!! The first signs of confusion and he has to call an ambulance!

My memory is pretty poor from having M.E & Fibro but it's even worse now I have memory lapses constantly throughout the day, forget passwords that I have been using for years, do things and then forget I've already done it I cannot stand for more than 5 or so minutes before my legs wobble and I fall. I cannot walk more than a dozen or so steps before my legs go from beneath me! I suffer a lot of pain due to my disabilities and the added limitations are so very frustrating!!

 

Viral Encephalitis is a very rare illness, at one point my Doctors couldn't even tell my husband if I would ever recover as I was that i'll. But thankfully with the Love and Care from my Husband, and the Wonderful care I got in hospital and am still getting as an out patient. it's a very long road but I am getting there. I will always have added problems to my health but at least I am alive!

 

 

Viral encephalitis would normally be diagnosed by a combination of lumbar puncture (the mainstay of diagnosis),

supported if need be by MRI scan and EEG.

The CSF obtained at lumbar puncture will often show white blood cells of the type usually associated with viral infection (lymphocytes) (rather than the polymorphs seen with bacterial infection) as well as a raised protein level,

 

Many different viruses can cause viral encephalitis, with 2 of them being;

HSV (treated with acyclovir), and VZV (the chickenpox/ shingles virus). I bet the doctors asked if you'd been abroad, as lots of the rarer viruses aren't usually found in the UK.

 

Of these the important one to treat is HSV, and HSV encephalitis often gives characteristic changes ("spike waves") on the EEG.

 

The most commonly tested for (by PCR, on the CSF obtained in lumbar puncture) are HSV and VZV, but if someone has been abroad they may do PCRs for the rarities like Japanese Encephalitis or West Nile viruses.

 

If you were diagnosed with HSV encephalitis: usual treatment is 3 weeks of intravenous acyclovir.

[ragsrule]

Hello there.

 

You have been through it haven't you, I hope life improves for you from now on. When I saw your thread title, I thought it was another complaint, it's really good to see the system worked the way it should for you.

 

HB

 

Hello heoeybee 13..

Yes, you could say that. I wanted so much to paint the NHS in a Good light for once. The nurses are so over worked and under staffed and work 12 shifts, but the care they show to their patients is Amazing!

 

There were times when my husband would come in and find I was in wet bedding and I was soaked through, if the nurses were stretched he soon found his way to the linen cupboards and where the wash bowls were and he would tell them not to worry, he would strip me down, wash me and put me in a clean gown and strip and wash the mattress and re make the bed, even got the hospital corners right!!

 

As Arthur is my full time carer at home so it wasn't like he wasn't used to cleaning up after accidents when I'm having a serious relapse, OK I refuse to wear nappies at home but in hospital, well At the time I wasn't aware I was, Arthur said that whilst at Margate they were going to cathaterise me so was very surprised to find that I wasn't!

I couldn't even begin to hold a conversation worth listening to or even understanding till around my eighth day in Canterbury! I was mumbling a lot, apparently the ambulance men thought I was foreign as they couldn't understand a word I was saying!!

[ragsrule]

Viral encephalitis would normally be diagnosed by a combination of lumbar puncture (the mainstay of diagnosis),

supported if need be by MRI scan and EEG.

The CSF obtained at lumbar puncture will often show white blood cells of the type usually associated with viral infection (lymphocytes) (rather than the polymorphs seen with bacterial infection) as well as a raised protein level,

 

Many different viruses can cause viral encephalitis, with 2 of them being;

HSV (treated with acyclovir), and VZV (the chickenpox/ shingles virus). I bet the doctors asked if you'd been abroad, as lots of the rarer viruses aren't usually found in the UK.

 

Of these the important one to treat is HSV, and HSV encephalitis often gives characteristic changes ("spike waves") on the EEG.

 

The most commonly tested for (by PCR, on the CSF obtained in lumbar puncture) are HSV and VZV, but if someone has been abroad they may do PCRs for the rarities like Japanese Encephalitis or West Nile viruses.

 

If you were diagnosed with HSV encephalitis: usual treatment is 3 weeks of intravenous acyclovir.

 

Hello BazzaS

Yes, I did have a Lumbar puncture, 2 MRI's, CT scans and an EEG, amongst many other tests like Meningitis, even HIV! I'm also waiting for a date to have a PET scan which is for Cancer as they found a cyst on my Liver and I lost my Mum to Liver & Pancreatic Cancer!

Although my Consultant said I didn't have a mini stroke my own GP and Haematology Dr's believe I did. You see I lost my Nan when she had two strokes and my Brother is just recovering from a stroke he had a week or so before I got Encephalitis.

 

Yes I'm aware of the different types of Encephalitis from the Encephalitis Society web site. I haven't been over sea's for over ten years and then it was only to Spain and Gibraltar!

[mikeymack2002]

You may want to consider an online support group. I used to be a member of. It is called behind the gray.. its all about injuries to the brain and strokes plus much more. The people there are fantastic. Give them the same story and see what they say. I can say you maybe surprised in the information you can get...

 

Good luck..

[ragsrule]

Viral encephalitis would normally be diagnosed by a combination of lumbar puncture (the mainstay of diagnosis),

supported if need be by MRI scan and EEG.

The CSF obtained at lumbar puncture will often show white blood cells of the type usually associated with viral infection (lymphocytes) (rather than the polymorphs seen with bacterial infection) as well as a raised protein level,

 

Many different viruses can cause viral encephalitis, with 2 of them being;

HSV (treated with acyclovir), and VZV (the chickenpox/ shingles virus). I bet the doctors asked if you'd been abroad, as lots of the rarer viruses aren't usually found in the UK.

 

Of these the important one to treat is HSV, and HSV encephalitis often gives characteristic changes ("spike waves") on the EEG.

 

The most commonly tested for (by PCR, on the CSF obtained in lumbar puncture) are HSV and VZV, but if someone has been abroad they may do PCRs for the rarities like Japanese Encephalitis or West Nile viruses.

 

If you were diagnosed with HSV encephalitis: usual treatment is 3 weeks of intravenous acyclovir.

 

Hello BazzaS

Yes, I did have a Lumbar puncture, 2 MRI's, CT scans and an EEG, amongst many other tests like Meningitis, even HIV! I'm also waiting for a date to have a PET scan which is for Cancer as they found a cyst on my Liver and I lost my Mum to Liver & Pancreatic Cancer so I think they just want to rule that out!

 

Although my Consultant said I didn't have a mini stroke my own GP and Haematology Dr's believe I did. You see I lost my Nan when she had two strokes and my Brother is just recovering from a stroke he had a week or so before I got Encephalitis.

 

Yes I'm aware of the different types of Encephalitis from the Encephalitis Society web site. I haven't been over sea's for over ten years and then it was only to Spain and Gibraltar! My Consultant's said I had contracted Viral Encephalitis, don't forget M.E is Viral, so I really don't know if that has any bearing on it as my immune is very low! What does HSV stand for please? I was given 15 doses of Acycolvir intravenously...

 

I have go to the warfarin clinic almost. weekly because my INR levels are all over the place, can't seem to be stable and within the normal range of 2 & 3. Goes as low as 1.1 &and as high as 7.0 Which means I am at greater risk of blood clots! At least the clots on my brain won't travel around the body but it's very possible that I could very easily get clots in other veins! So It's a bit of a worry. I've already star..ed death in the Face once and I don't fancy doing it again!

Thank you for your post, it was very interesting, didn't quite take it in but I will certainly be looking it up!

Edited October 1, 2015 by ragsrule
Change heading slightly...

[ragsrule]

You may want to consider an online support group. I used to be a member of. It is called behind the gray.. its all about injuries to the brain and strokes plus much more. The people there are fantastic. Give them the same story and see what they say. I can say you maybe surprised in the information you can get...

 

Good luck..

 

Thank you so much Mikeymack2002,

I certainly will pop along for some info and support. Don't get me wrong, Arthur has been Absolutely brilliant but he doesn't like talking about it now.As far as he's concerned it's over with. He isn't a nasty man but it really spooked him. He was very upset especially when he sat beside me one day at the beginning and asked me if I knew who he was. Apparently I just looked at him and said "No", he said that hurt him deeply.I keep having to ask him about different aspects as I keep forgetting what be tells me! I get so frustrated about everything and honestly think I'm going mad some days!!

 

We've been married 26 years and there really is only just us. OK we have Sisters and Brothers but we only see them now and again because we moved right down to the coast. My sister lives an hour away, one of Arthur's Sister lives nearly two hours away etc... I can't travel well at the moment because of all the pain I am in and can't abide noise at the moment with these terrible headaches!

We are all each other has ever needed, OK we have a few friends but they live quite a distance from us. I have a couple of friend here but don't get to see them often. So yes, I feel I could probably use some support! Thank you, it's much appreciated...

[think about it]

It's great to read something with a positive outcome, stay strong and keep going!

 

In terms of support, perhaps contact your local council's social work department and ask for a carer's assessment for your husband. They'll be able to sit down with you both and discuss your needs and how they can help.

 

Good Luck!

[BazzaS]

 

What does HSV stand for please? I was given 15 doses of Acycolvir intravenously...

 

HSV is Herpes Simplex Virus.

 

Relevant because :

A) it is a possible cause of viral encephalitis

B) There is a treatment (acyclovir),

C) Not giving the treatment (Iv, for 3 weeks) is associated with worse outcome if it is HSV encephalitis.

 

So, I suspect if they stopped at 5 days (15 doses), the HSV test on the fluid they took off during the lumbar puncture came back as "not HSV".

[ragsrule]

It's great to read something with a positive outcome, stay strong and keep going!

 

In terms of support, perhaps contact your local council's social work department and ask for a carer's assessment for your husband. They'll be able to sit down with you both and discuss your needs and how they can help.

 

Good Luck!

 

Thank you think about it.

That is in the pipeline through my occupational therapyst at the moment along with a Disabled shower as I have great difficulty getting in and out of a bath and as I am unable to hold my arms up for any length of time I am unable to wash (and dry) my own hair but leaning over the bath is causing back problems for my husband. But a shower would be easier all round as it has waist height screens that open and a curtain and seat. So he won't have to lean over to wash my hair or over to the taps to rince it, these rubber shower attachment things don't stay secure on my taps!

 

In the interim she has given me a bath lift, makes life a little easier getting into the bath but of course it still doesn't help hubby out as he still has to bend over to fill a jug to rince my hair!

 

I will also be having one of those telecare alarms installed in case I fall and can't get to the phone on the odd occasions that my husband has had to go shopping. He tends to go once I go for my afternoon sleep, but I do tend to sometimes wake before he gets home and have taken a fall before now!

[ragsrule]

HSV is Herpes Simplex Virus.

 

Relevant because :

A) it is a possible cause of viral encephalitis

B) There is a treatment (acyclovir),

C) Not giving the treatment (Iv, for 3 weeks) is associated with worse outcome if it is HSV encephalitis.

 

So, I suspect if they stopped at 5 days (15 doses), the HSV test on the fluid they took off during the lumbar puncture came back as "not HSV".

 

Hi BazzaS,

Thank you for explaining that. I must have gotten it wrong because I was given Acyclovir for the whole of my stay in Canterbury so it must have been for more than 15 doses. They definitely said it was touch and go at first and I was really very unwell so perhaps they decided to give me more Acyclovir to be doubly sure. I was at Canterbury for 11 days and had Acyclovir 3 times a day for the whole of stay. Sorry to confuse things. Heaven knows where I got 15 doses from, perhaps got muddled because I was hospitalised for a total of 15 days!

 

Hubby has written a little diary of the events and meds that I was given... Must make a note to ask my Consultant if there actually was a brain found on my scans!! doh!