Tuesday, 30 August 2011

I was literally fighting for my life...

I felt I should do an update regarding my meningitis. I have spoken at length in the past about chiari and wanting to spread the word. Now I have had meningitis, I felt I should talk more about that.
Normally, people recovering from surgery who get meningitis suffer from the viral form of it. I was unlucky, because I managed to get bacterial meningitis. I spoke at length to my doctor about this, after having a mini break down in the last few days of my hospital stay. He was kind enough to talk me through everything and I took notes so I knew what was going on. I was scared and confused about what was happening. I have not written about this much as it scared me so much, and I know people who have chiari read this. I also know that close family and friends read and I didn't want to upset them. It was horrid for me and I feel that it would have been scary for others so I kept it hidden, even from my closest. I am sorry for that!
It is shouldn't be a worry for other chiari people waiting for surgery. I was VERY unlucky to get the bacterial form of the condition.
So basically I had pneumococcal meningitis. According to the Meningitis UK site it is the second most common type of meningitis in the UK. It is also the deadliest form.
When I arrived at hospital with a few vague symptoms of meningitis they didn't think I had an infection to the extent I had. My neck was stiff but it had only been 6 days since my surgery, so this couldn't count that. I had a slight aversion to bright lights, but not as bad as it can be, I wanted to keep my eyes shut at all times but it, at that point was not too bad. I had a headache, but again that was not uncommon considering what my brain had been through. This type of meningitis doesn't produce a rash so that is another thing that doesn't help.
When I got up to the ward after my MRI, about 2 hours after being admitted, things changed. I couldn't keep my eyes open, I was so tired and didn't know what was going on. I had moments of being totally lucid and moments of thinking I was being held in hospital against my own will. I hated bright lights, or any lights. The nice nurse made me a makeshift eye mask and turned off every light. She even stuck a bandage around the bedside TV which for some reason do not turn off. I was vomiting and was very ill. I do not remember too much about this, but the same nurse was looking after me on another evening and told me about it. I do remember becoming lucid and having no idea why my television was wrapped in a bandage. Kind of an odd moment lol.
So my doctor came round to tell me the results of my blood work (infection markers up), took one look at me and got his lumbar puncture kit out, at 6.30am. He also started me on dexamethasone, a steroid. I was not with it too much then, but did perk up a while later.
So LP results showed I had over 8 times the amount of white blood cells needed to be diagnosed with meningitis. You need to have at least 300 to be diagnosed and I had 2600!! It also grew something in some test they do to see what you have wrong with you. The doctor did explain about this, however I have no idea what I have written when I was making notes. Apparently I decided to write in a totally different language. It makes no sense!
So yeah, had 2 weeks of IV Cefotaxime, 4 weeks of oral Rifimicin and 4 weeks of dexamethasone.
I didn't know how unwell I was the first week or so. My doctors didn't tell me as they didn't want to scare me. When I was feeling better I was stupid and looked up the medicine they had put me on online. I found some scary information and this is what caused my massive panic/mini breakdown and prompted the conversation with my doctors. Now this is hard for me to think about and hard for me to type. My doctors had classified my infection. They have a list of like 5/6 levels of infection, based on the expected survival rate. Due to the amount of infection I had, and they way it was very slow at responding to the antibiotics and steroids they had classified my condition as life threatening. This means I had about a 50/50 chance of not surviving, and an even higher rate of being left with severe disability. I was downgraded after a week to severe infection. I was then upgraded to life threatening again after my infection levels doubled. I was then downgraded and eventually made my way right down the infection level chart. Hearing all this from my doctor made me feel good. This might sound dilly, but he told me after I was classed as severe so I was getting better. It made me feel good because I knew that I was fighting and winning. Literally battling for my life and I didn't know, but I still managed it. Made me feel stronger and more able to carry on.
I am lucky as I have been left with only a few residual effect from the meningitis. I have very bad tinnitus which is a nightmare. I did have this before my operation, but not badly, I hardly noticed it. It went after the operation. It then came back when my infection was at its worst. I now have to sleep with headphones in and music playing. I tried using earplugs, but they make it worse. I have to have something playing to distract myself. I also have slight hearing loss. Apparently, my doctor told me, something like 20% of people who survive have hearing loss. I will need to see a hearing specialist, but it seems I have problems with high pitched noises and very low tones. I can hear to talk and have no problems at all with that. However I can't hear bass type sound or squeaks. I have had a hearing test and it just shows that. It may cause me problems in later life. I will know more when I see the hearing doctors. More hospital appointments. Oh YAY =/

Where do I live?

So after 25 days, the hospital finally stopped my IV antibiotics and let me go home!!! I had pretty much forgotten where I live, what it was like to not be attached to wires, drips, BP machines, pulse things. It is nice to not have 30 mins of IV at 9am, 1pm, 5pm, 9pm, 1am and 5am. To not have blood tests everyday, to not have my blood sugar taken twice a day because I was on such a high dose of steroids, to not have my BP taken and to generally not be on my own all day until visiting time.
I was so excited to be at home. It was great. I had chinese takeaway and caught up on some TV. Didn't sleep very well because the bed was too flat. Woke up and felt oky till 11am. My vision went squiffy, and I noticed my incision had swollen up. Decided to try and ride it out. It was, after all, a Saturday and a bank holiday weekend.
Got to 1pm and I was vomiting, even with my anti-sickness tablets inside me. Also my incision felt damp, which it had the previous evening, but this was a fair amount more. At this point I really, really did not want to go back to the ward. I decided to phone NHS direct and ask for advice. They told me I needed an ambulance. I didn't want that so they referred me to the out of hours GP service. Got a call back about 5 mins later and the GP also said she wanted me to get an ambulance. She also said she would phone my ward and ask advice. 20mins later she phoned to say they wanted me to go to a local hospital to see a Dr there who would decide if I needed to be readmitted.
I was hoping that this doctor would just say my incision was infected and that was the dampness I could feel. But nope, it was a clear fluid and could pretty much only be a CSF leak (I knew this all along, but was convincing myself otherwise) He phoned the ward and after a while waiting for a bed I was admitted. I had left bed 15 just 24 hours previously, and was admitted to bed 16.
So I spent 2 nights in again. My wound was leaking a fair amount on the first night. It was not only CSF leaking, but also blood. I woke up and my pillow looked like I had stabbed it =D
Seemed to stop leaking and they observed me for a day and did some scans. The scans show that my ventricles are still considerably enlarged so I am still on the way to having a shunt fitted. They gave me the option of going home on Monday or staying today. I was out before lunch on Monday!!
I am on Rifampicin 600mg twice a day until September 10th. I do not like this antibiotic. Kinda gross so don't read the next line if you don't wanna barf. Basically this drug has turned my urine, stools, tears and sweat bright orange. Not nice. Also I have to take it in the morning, which is when my head is at the worst. I get really bad sickness and the antibiotics have turned my vomit bright orange and they burn my mouth so bad. Gross I know but hey, this is my blog so I am going to type this =D
So, yeah, see my NS about 9th ish of September, my infection markers need to be normal for him to consider surgery, as he doesn't want to spread my nasty meningitis around my system. He gave me the option of either having a shunt fitted right away, or having an ICP monitor fitted first. I think I am going to take the ICP route. I think it is much less invasive and it may show I do not need a shunt. My NS did say it was unlikely that the ICP would show normal pressure after mine was so high but he did say it would help him sort out settings for the shunt so if I wanted to take that route I could.
I am still getting tired easily. I walked to the postbox today. This is literally across the road and can be walked in less then 5 min there and back. By the time I got home I was apparently very pale and needed to go to bed. Had a 20 min nap and now feel a little better. Sat in the garden in Jacobs little play house and read some books with him and just chilled. Still tired and sore and could sleep for a week but just need to pace myself.
So, that is all. I will be sure to update when I can. I have decided I bloody hate chiari, hydrocephalus, scoliosis and meningitis. However, being in hospital I saw people who will never get better, never have a quality of life. I saw families broken due to a person injury. Life is harsh, but I now know that it is also short and can change at any time. I am going to get better and then grab every second I can!!!

Monday, 22 August 2011

Surgery is done!

So I had my operation on 29th July. It all went oky. I had some problems whilst under GA, and my blood pressure bottomed out about 4am the next day. My herniation was much larger than they thought, my surgeon actually apologised for not doing the operation sooner. If only the MRI was accurate!
So I was oky, surgery Friday and was home by Monday. Was having problems with headaches and on the Tuesday I was at my GP due to pain. I was literally constantly sweating because of the pain. It was seriously yuck! Wednesday I was doing oky ish. Thursday I was unable to keep my eyes open, was feeling sick and hot and cold. Went to my GP and saw a stupid locum. She told me "what do you expect, you have just had brain surgery?!" I told her I knew something was wrong. She told me if I was worried to go to A&E but it would be a waste of time. I ignored her and went to A&E.
Got to A&E and they actually bothered tot take my vitals. My temperature was 38.9 and my pulse was 147. If the GP had bothered to do this she would have known I was not right. Got taken to majors and had a really great doctor. Neuro came down and I was sent for an urgent MRI. Also had a lumbar puncture. They found out I had raised intacrainal pressure and also a build up of fluid on my wound site. Also had a fairly large amount of blood in my CSF which is abnormal.
They then found out that my white cell count in my CSF was high. You are supposed to have between 0 and 5 white blood cells in your CSF. I had a massive 2600. So started on IV antibiotics, which I am still on now as the meningitis is still winning. I am also on oral antibiotics. My last white blood cell count was 375, it did get down to 250, but the infection fought back.
I also had lots more lumbar punctures. Normal ICP is 7-15, with anything over 20 considered high. Mine was 59 in one LP. So they decided to fit a lumbar drain, as the high pressure was causing my wound to re-open and leak. The lumbar drain is a needle placed between 2 vertebra in your lower back. They stitch this in and attach it to a bag, which collects the excess spinal fluid.
A normal person with slightly raised pressure drains about 5mls every 4-6 hours. I was draining between 10 and 35mls per hour. I had the drain in for a week, and they were hoping when they took it out my brain would stop making so much fluid and sort itself out. Within about 6 hours of the drain going I was, again, in a world of pain. It is the hardest feeling to describe, but try and imagine feeling your heartbeat in your head all day long. Wn you feel your heartbeat, you get a rush of fluid which you can kinda feel and it is painful. It is almost like someone has stuck a bicycle pump in my ear and is forcing air into my head. So that was Thursday. They have been watching me over the weekend to see if I improve. I have not improved, I have got a fair amount worse. I can no longer lie down flat as it makes my head worse. However, I can not sleep upright as it hurts my still very tender neck. So I have been catching only a few hours kip each day. The antibiotics are given all round the clock, every 4 hours and so I am woken up every night at 1am and 5am. The antibiotics take 30 mins to run though and then they have to disconnect and flush my IV. This means I am awake for the whole time. Every night. I normally sleep from about 3am till 5am, then maybe another hour and then I am woken up for meds and obs ect. I feel like a walking talking zombie lol.
Anyway, I digressed. As I am not improving they are going to scan me again with a view to fitting and LP or VP shunt. More surgery, BOO! I have another week of IV antibiotics so by the time that is all done I will have been stuck in here for a month!
Even with the meningitis and Hydrocephalus I am still super glad I had the operation. My chiari head has gone, I can move my right hand properly and my eyesight has improved, both the squint and vision, in only 2 weeks.
I hate being in hospital but I view it as everyday I am in here, I am one day closer to going home and living the rest of my life as a proud chiarian, brain surgery and meningitis fighter and winner.