I’ve tried really hard not to talk about (in this blog) what happened to me in 2010, but it’s difficult to ignore it when it has become part of my life and affects what I do and can do and will do. Best to write it all down, just the once and then bottle it back up again. So here goes…( I warn you, it’s a lo-o-o-o-o-n-g story. Make yourself a cuppa…and if you don’t want to read it all, that’s ok too…this is more for me than for you…)
In April 20210 I was on long-service leave from my job. I was not having a lovely time of things due to a chronic and crippling neck pain problem that seemed to have no cause and no solution. I was depressed and sad and, although I don’t tell many people this, a little bit suicidal. I felt useless and hopeless and just plain down in the dumps. I cried a lot. I felt terrible that my husband had to put up with me day after day, whinging about my pain and not being able to do anything without pain killers and heat packs and valium and a great deal of effort. I couldn’t travel or go to the movies or concerts or the theatre any more, not without being in considerable discomfort, and I felt that life wasn’t worth living a lot of the time. I was desperately unhappy and stressed in my job and everything seemed bleak and without hope. I also felt guilty for feeling this way which only compounded things.
I had visited my GP and asked for anti-depressants, thinking maybe I could get myself back on track with a bit of help and also to get rid of the terrible feelings I was experiencing. I had taken the ADs before (for short periods) and had had good results with them. I usually had some side effects on the first day of taking them, but that usually went within hours and I was ok to function normally after that. So on the weekend, with hubby with me in case I reacted badly, I took the first tablet. Everything was ok at first, but then I started feeling like I couldn’t breathe. I was gasping for air, having a terrible panic attack. My hands and feet twisted and strained into weird positions and I couldn’t unlock my fingers. My hubby called an ambulance. By the time they arrived, I had calmed down and was doing better, able to breathe properly and not so stiff and panicky. The ambulance guys checked me over and said I was just having a panic attack and that I should be ok now. They went away.
I continued to have attacks throughout the afternoon. My husband called my cousin to come and sit with me to help keep me calm. At this stage we still thought it was the anti-depressants causing these symptoms. My hands were still twisted and my cousin tried prying my fingers loose but couldn’t – they were locked shut. She stayed with me until midnight when I was starting to relax and fall asleep. The next day I felt fluey and sick with a bad headache and general discomfort. We decided to go to the doctor – my own GP was booked out so we had to go to another one in town that could see me straight away. By this stage I was feeling quite awful but still just really exhibiting flu-like symptoms. I had a sore neck but that was nothing new and the doctor didn’t think it was anything to worry about. My feet were very painful – the twisting and “locking” of the night before had left them terribly sore and I had difficulty walking. My headache was getting worse and I now couldn’t stand bright light and sunshine. The doctor said I had a virus and should go home, take plenty of aspirin etc and drink fluids.
At this stage we still didn’t think there was anything majorly wrong (I know, dumb!) but I just felt sick, like I had a really bad flu bug and I just needed to get over this first couple of days and I’d be fine again. By the evening I had started getting feverish and had vomiting and diarrhoea. After this, I don’t remember anything. At some point I passed out and collapsed, heavily, on the floor by our bed. My husband called my brother to come and help him carry me and get me back to bed. My brother came very quickly to our house, took one look at me and said “We need to get an ambulance”. You have to remember, my hubby had already had a paramedic and a doctor tell us I was just suffering from the flu. He didn’t really know what to do. So the ambulance came and took me straight to emergency. I was convulsing and moving constantly at this point. The ER doctors thought I was having a drug overdose – my hubby assured them I wasn’t a drug-taker and that all I had had different was one anti-depressant. The head of ER came and within minutes had diagnosed me with meningitis. I was rushed into intensive care. From here on in the details are sketchy because I only have the information second hand and my husband, understandably, doesn’t like talking about it…
At this stage I was also haemorrhaging (from pretty much everywhere) and so they were unable to do a spinal tap to ascertain which strain of meningitis I had. They figured it was meningococcal meningitis as I was now showing signs of the tell-tale rash everyone associates with that condition. I was also septicaemic. The doctors told my husband he should call someone to be with him because there was a very good chance I would not survive the night. Within an hour or so my Mum and Mother-in-Law were at the hospital, waiting with hubby for news. I was placed in an induced coma. At some stage my family were asked whether they would agree to me part of a drug trial they were conducting – a new drug that was being trialled in the treatment of septicaemia. It was agreed that I would be part of the trial. It was a double blind trial – so we still don’t know if I was actually given the drug or a placebo. We should find that out in the next 12 months once the trial is completed.
By the morning I was still fighting and the doctors were moving onto the next area of concern – my brain. It was very possible that I would be brain-damaged. When it appeared that I had not suffered significant damage there, it was on to the next problem – my limbs/digits. The septicaemia had spread to my hands, fingers and toes and there was the possibility that I would lose any or all of my digits. My Mum says she can still clearly remember the morning the doctor lifted back the sheets, exposing my toes and went “ta da!” because the tell-tale purple and red “blotches” were disappearing and normal colour was returning. Other concerns were paralysis (due to nerve damage), eye damage (again due to nerve damage but also from the swelling and haemorrhaging I had experienced) and organ damage. During the early hours of my admittance I had suffered an almost total organ shut-down and there were concerns that I would not regain proper function.
On the 4th day I was still in the coma but beginning to show signs of waking. On the 12th of April (my cousin’s birthday) I apparently “flickered” one eyelid – my cousin took this as a very good sign and the perfect birthday gift to her. I was coming out of the coma. Waking from it was a surreal experience…being told that you’re in hospital and have been for several days, that you’ve been in a coma, that you’ve been severely ill – all was very hard to comprehend. I was still intubated at this time so unable to speak. I couldn’t move – I was so weak and physically drained that I couldn’t do the most basic of movements. I couldn’t turn over, lift my arms or hands, move my head – everything was too hard. I drifted in and out of sleep, each time waking up to a new face as nurses and doctors monitored me round the clock and my family members that were allowed in the room sat by my bedside. I myself don’t remember anything until I had been in I.C.U for about 7 days. I had apparently been awake a few days after my admittance but couldn’t remember anything or anyone. Having the intubation tube removed was wonderful, although I still couldn’t speak for a while. I was unable to drink but was given some ice chips every so often to ease the discomfort from the dry mouth and throat. A nurse regularly used a suctioning hose to remove excess fluid from my mouth and throat until I was able to swallow properly myself. My concept of night and day was all over the place – I had no idea what time of day it was and was often confused about where I was. My eyes were not “working” properly – I couldn’t focus on things and had trouble knowing which way was up or down. I had some amazing hallucinations too! A big white horse stood in my room at one point and then galloped off through the wall that had magically turned into a waving, golden field of wheat. That’s when it wasn’t covered in beautiful, moving poems written across it. Weird but at least it wasn’t anything really disturbing.
The nights were scary as you could hear other patients and people crying or being brought in in shock from accidents and other traumas. One night a man yelled and sang loudly which, at the time was not comical but rather frightening for me. My nurse that night closed the door to my room and tried to block out the noise as best as she could.
I received 24 hour care, as you would expect from an intensive care unit. The nurses and doctors were so wonderful. I can honestly say they treated me like I was their own and were so kind and caring to me. Even the orderlies (what are they called now? patient assistance officers? something like that) were super nice and gentle – they knew how frightened I was and how much I hurt. The pain was something I wouldn’t have expected. Every muscle in my body ached and any movement was agony. I had to be turned and moved every hour to prevent bed sores and I remember crying out and asking one orderly to be careful with me and that my back and neck were very painful. Weeks later he would visit me in the hospital ward and say “See? We looked after you, little lady, we didn’t hurt you. We were extra careful…” I would watch the nurses at night as they sat by my bed, reading their notes or just monitoring my “machines” and blood pressure etc. One young nurse fell asleep. I remember feeling bad for her – stuck in there with me.
All this time I had been thinking the worst was over – I would get better and everything would be back to normal. I just had to get my strength back and recover a bit and I’d be fine. The news that my kidneys had been badly damaged and that I would need dialysis (I didn’t even realise I was already on dialysis – it hadn’t occurred to me that I hadn’t been to the toilet in days) was worrying but I didn’t know exactly what that would mean to my life.
By day 9 or 10 I was moved to a normal room in the renal ward. I was terrified. Being unable to move or help myself in any way made me feel vulnerable and scared. Again the nurses were so kind to me but I was still frightened and anxious. I wasn’t able to push the nurse-alert buzzer (I wasn’t even strong enough to do even that, plus I couldn’t reach up to get it anyway) so my Mum asked a patient in the next bed if she could call staff if I needed something. That was the other thing – I was looked after even by other patients! The lady in the next bed was wonderful to me – she listened out for me that first night and only went off to sleep herself when she could hear me snoring (hey, I wasn’t well ok? I don’t snore normally!). As the days went on she also helped me with my breakfasts, made my morning tea for me and got cranky with the nurses if they were late getting to me and my food was going cold. She kept reminding them that I couldn’t do things for myself – she was like a second Mum! I have to say though – the nurses were like angels to me. They were so busy and run off their feet but they would spend as much time with me as they could and help me as much as possible. I slept a lot (lucky for them) and I think the fact I was always polite to them and not constantly asking for stuff made them treat me better. Here’s a tip – if you’re in hospital, BE NICE to the nurses. You will be rewarded. Just remember that they have to deal with hundreds of people, many of them not very nice, a lot of them super demanding and rude. If you’re nice and easy to get a long with and say your pleases and thank you’s you will be treated in kind. I’m not saying nurses are mean to anyone who doesn’t behave and act with consideration, they’re professionals after all, but it does go a long way to making their job easier if you’re pleasant. One nurse snuck me in different cereals to try and coax me to eat (I wasn’t eating much at all and had terrible nausea), another brought me a hot drink in the middle of the night because I couldn’t sleep. They would chat to me and have a gossip when their shifts were over and they treated me with such kindness I will never forget them. One of the male nurses was so lovely to me and my family – he would get extra cups of tea for my Mum and sneak me in heat packs for my neck (which wasn’t really allowed). He sat on the floor one day, next to my bed, as I underwent the four-hour dialysis process and talked to me about non-hospital related things. One afternoon, I suffered a horrible seizure while having dialysis (my blood pressure had dropped dangerously low and I went into a kind of shock) and he was with me in seconds (despite the fact another nurse was actually the one looking after me), rubbing my feet and trying to get me to calm down. He also comforted my Mum and husband who actually thought I was dying again because it looked so bad. He gave my Mum a hug and got her more tea and got cranky at the nurse that was in charge of me that day (she’d taken too much fluid off me). It was like being looked after by a big brother or something. Anyway, I digress…
During my weeks in hospital I had to have lots and lots of different tests for various things. Initially they were worried about pneumonia as I had a lot of fluid on my lungs so I was constantly having chest X-rays which were an ordeal for me. I was still in a lot of pain and unable to move or sit up so having to be propped up and hold onto a bar above my head for the X-rays was agony. I had no strength and these tests exhausted me. I had to have blood tests over and over again. I had to have scans of my kidneys. I had also damaged my foot when I collapsed at home and they thought it might be fractured so that was also x-rayed. I had to have injections of heparin every second day or so, in my belly to help stop blood clots. Then there was the dialysis every second day. I mostly slept through that when people were not visiting me.
Another issue was my hands. They were excruciatingly painful. I can’t describe how awful they were. In the beginning I was so worried about losing my hands, but then, after a few days of the increasing nerve pain, I was almost wishing they’d been cut off. Every little movement or touch hurt them. Dialysis made them unbearable because your blood temperature is dropped and this in turn made the pain worse. Imagine having someone shoving sharp matches down under your fingernails and then setting them alight – that’s what it felt like. Only worse. They were, perversely, also very numb in places. I could feel the pain but not the fingers themselves i.e. it was like I couldn’t get the message from my brain to my fingers or visa versa…it’s hard to explain. I couldn’t pick things up properly because I couldn’t feel my fingers or tell when they were touching things, other than the horrible that came with it.
To say I was miserable would be an understatement. I would like to say I soldiered through the whole ordeal as bravely as I could but, in all honesty, that would be a lie. I cried a lot. I did the “why me’s?” and the “it’s not fair” routine. I knew I was lucky to be alive but I felt like I had survived just to be put through more pain and anguish. I thought I was being punished for being suicidal previously. I felt wretched and sad and just so hopeless. I felt the most pain from what I was putting my family and friends through. I felt so bad that my husband had had to deal with it all – we’d only been married 5 months.
Through it all, I was so lucky to have the support of my family and friends, co-workers and, at times, complete strangers or friends-of-friends. I received countless get well cards, bunches of flowers and other gifts. I got so many flowers I had to ask the nurses to share them around with other patients. My bedside looked like the inside of a florist’s shop. I had a wall covered in paintings and get well wishes from my nephews and nieces. I gave a couple to my “neighbour” too – she never had any visitors and my family often spoke to her and made her feel included.
I can never forget how wonderful everyone was to me. My friends sat with me and rubbed my painful hands for me. They made me laugh and let me cry. They chatted amongst themselves around my bedside and gave me a sense of normality. One of my previous bosses came almost daily and brought me lunch (when I couldn’t face hospital food) and took me outside in the sunshine in a wheelchair. My workmates visited me often and I was even lucky enough to have a visit from my favourite PR dog Marci (with her “Mum” who is one of my dear friends) – the nurses were great and allowed this visit without hesitation. I think they knew it would be good for me.
My cousins visited daily (except for one very long week when they, and the rest of my family, probably due to stress, all came down with the flu) and kept my spirits up. They brushed my hair and brought me comforts from home like support pillows and fluffy dressing gowns. One cousin was even good enough to shave my legs for me. They were all angels and I couldn’t have made it without them. My husband took so much time off work I was worried about his job, but his bosses told him to take all the time he (and I) needed.
After several weeks in hospital, I was allowed to go home for Mother’s Day. I still couldn’t do much and was only barely able to stand up and walk a few steps. I was given a set of crutches to help me from the wheelchair but I found them very difficult to use – I was so wobbly and the pressure on my hands from my weight on the crutches was awful. I had been learning to walk again, step by step but it was exhausting and just so hard. Just getting up our front steps at home was terrifying – I never thought I could do it. I was still suffering from the terrible nausea and vertigo and the standing up only made it worse. I was almost glad to get back to hospital.
In mid-May, one of the doctors came to see me and said it was time I went home. He said I would get better quicker at home and would be less likely to contract any nasty bugs or infections. It was news to my ears. Waiting to be discharged seemed to take forever. My husband waited with me and I knew he was nervous about me coming home. The hospital had arranged for several modifications to our home e.g. a special seat for the toilet and another that fitted over the bath so I could be showered sitting down. Finally we got to go home.
The following weeks were a blur of physiotherapy to try and get me walking properly again. The physios visited me at home and monitored my progress and gave me exercises to do. They also worked on my hands and gave me instruction as to how I could strengthen them. I had to learn to dress myself , feed myself, get myself to the toilet and bathe myself all over again. My husband was so patient and helped me with everything but I was impatient to “get better” and back to normal so I tried very hard to do just that. I was off the crutches very quickly – I felt that they hindered me anyway and made me more unstable on my feet. My hands were still very painful and I could do very little for myself. It was months before I could do my own hair (oh the humility!) and buttons and zips were a huge problem. I just couldn’t make my hands and fingers do what they were supposed to do. I thought I would never craft again or be of any use to anyone. But I kept going and working at it until I was able to do basic things by myself. I can’t tell you how wonderful it was to be able to make a cup of tea for myself!
A biopsy of my kidneys in June showed what we had all feared – my kidneys were very badly damaged. I had little to no function in my left one and less than 18% in my right one. I would be on dialysis indefinitely and would be put on the transplant list as soon as possible. I was devastated. I think my whole world fell apart. I was terrified all over again and thought, what now?
I was scheduled for yet another procedure – this time to create a fistula in my arm that would be used for dialysis (I was currently “hooked up” to the dialysis machine via a “Hickman Line” which poked out the top of my chest. Hickmans are not meant to be used long-term as they are at risk of infection). A fistula is the surgical joining of an artery and a vein in order to create a larger access point for dialysis. I had the surgery and all appeared to go well except that, due to my nerve damage, my veins were very small and the fistula would possibly not form. We had to wait and see. I was supposed to feel a “thrill” which is what they call the buzzing sensation that means the fistula is working. It feels a tiny little bee is trapped under your skin. After a couple of days I didn’t feel anything and told my nurses at dialysis. They couldn’t detect anything either and phoned the hospital – I was to go back to hospital and see the surgeon again that night. I was so upset – my friend was with me that day and she said she couldn’t believe I had to go through something else. She took me back to the hospital and the surgeon told me that the fistula had indeed failed and that we would need to discuss other forms of dialysis access. I was distraught (I’m not very brave – can you tell?) and just wanted it all to be over.
The next day I went in with my husband to see the renal nurse who liaised with my specialist. She looked cheerful and I soon found out why… My latest blood results had come back showing very positive signs of improvement and my function had increased to 24%. She asked me “How would you feel about coming off dialysis for a while?” I was so happy I cried. Maybe the worst was over. I was allowed to come off dialysis, but had to keep the Hickman line in for the time being, just in case. My cousin had also come in with us and she was waiting in the patient lounge for us. I took one look at her and burst into tears again. My husband had to explain to her what was happening. It seemed like a dream but I knew not to get my hopes up too high.
My blood results steadily improved – slowly and sometimes taking a step backwards too – until I was allowed to have my Hickman Line removed. Such a happy day! And just in time for me to attend a friend’s wedding, sans tubes!
So where am I now with it all? (If you haven’t fallen asleep already). My function is at 39%. It goes up and down. I’m still off dialysis and live in fear of going back on it. I have to watch my diet and have regular blood tests. I give myself an injection of Aranesp, a synthetic version of erythropoietin, a human protein that is produced in the kidneys. Aranesp works by stimulating the production of red blood cells by your bone marrow. I have the injection every six weeks in my belly. I have to see my renal specialist a couple of times a year (if all is well). I’m deficient in Vitamin D so have to take a supplement daily. I’ve put weight back on (I had lost 11kg) and am almost back at the point where I start whinging about being fat again.
I officially left my old job 4 months after I got sick. I didn’t feel strong enough to start working again and just needed time to heal and de-stress. I took a whole year off and began a new job in March 2011.
My hands were a problem for a long time. I did end up seeing a neurologist about them and he let me know that, although there was considerable damage to the nerves in my arms and hands, he was sure that the nerves would heal themselves over time. I still have numbness and a sense of not being connected to my hands. Some days they hurt a little bit and they are sensitive to pressure. They are still numb in places and I have numerous burns to show for it. They don’t always “behave” like they should – I drop stuff A LOT. Last week alone I smashed three mugs because my hands gave out and they just let go. I still have a bit of trouble with stairs and anything that requires balance. I can’t turn onto my left side without horrible dizziness, but that too is decreasing as time goes on. I get tired and worn out at times but I just try to keep going and remember things could have been worse.
But I’m doing ok. I still have bad days but I can walk and feed myself, I can do my crafts and cook a meal. I can do my hair again! I can bathe myself and shave my own legs. I was lucky to survive and I am lucky to BE alive. It’s an ongoing story and will continue to be – my kidneys are still obviously a big concern and though they worry me a great deal, I try not to think about it too much. No one knows if they will continue to improve or if it will all go downhill again. It’s a daily battle to find foods that I am allowed to eat, and I admit I am not always perfect but I do try.
The whole experience taught me so much. I will forever be grateful to my friends and family. I never took them for granted before but I certainly never will now. I was shown so much kindness and that has been difficult in an odd way. Sometimes I feel like I don’t deserve it. Why did I survive when so many people lose their lives with this terrible illness? I can only say I believe that love saved me. It’s corny but true. I had so much love bombarding me from every direction and I can’t do anything but recognise it’s power and its capacity to heal. If I had died, my tombstone would have simply said “She was loved”.
So that’s my story. It happened and we moved on. Thank you for listening.