Friday, 7 September 2012

The diagnosis of my mystery illness

Since I began this blog I've made reference to a suspected food allergy.

My suspicions were aroused in September 2010 when I suffered four, what I call 'episodes', during that month. 

The symptoms of the episodes are:
  • Swollen tummy
  • Pains in tummy
  • Shoulder ache
  • Back ache
  • Nausea
  • Glowing aka sweating
and when it's really bad
  • Dizziness
  • Trouble breathing
  • Ringing in ears
  • Blurry vision
I examined what I had eaten when the episodes struck and found that wheat, dairy and gluten where the common denominator. I cut these out and I had no more episodes. 

I slowly introduced dairy. I'm ok with that. 

I've tried a little bit of food with gluten and I think I'm ok with that.

I've been too scared to try wheat. 

However, there have been 2/3 occasions where I have accidently eaten the tiniest amount of wheat - I'm talking breadcrumb size amount - and I have been ill. Thus, that has confirmed to me that it's wheat.

UNTIL!

Sunday 5th August 2012 when I had the worst episode ever and ended up in A&E, but I hadn't eaten any wheat. 

On that Sunday I had never felt so ill in my life, or in so much pain. I called the NHS Direct  (0845 46 47), and they called an ambulance. That got the neighbours curtains twitching lol. 

It was my first time with medical people in my house. My first time being wired up to bleepy machine (I know all the terminology!) and my first time in an ambulance. 

The paramedics were great and soon after they arrived I started to feel better, but they thought it best I go to A&E as my symptoms had been coming and going all day. 







I had a 2 hour wait at A&E (thank goodness for my twitter friends keeping me company). 

Eventually I was seen by the Doctor and when I described my symptoms I was told that they weren't the symptoms of a food allergy. I wasn't told what they were the symptoms of, but I was given the all clear and told to go home and see my GP the next day. 

Monday 6th August

The day started with a 90 minute wait to see my doctor. Well, she was a new doctor to me. I don't think I've been to the doctors for two years. 




I was so tired, hungry and thirsty after the events of the day before and began to realise how much time could be taken up being ill, seeing doctors, waiting around. I hate wasting a minute of time!

I was finally called for my appointment and the Doctor asked asked me why I called NHS Direct and not a local doctor from her surgery who could have come out to me. The conversation went on for ages and I got the impression that she was annoyed with me for not called 'her' office. It felt like she was talking to me like a child.

I rarely get annoyed with anyone, but I had to speak up for myself and speak rather firmly to her. "Look, I was very, very, very, very ill yesterday. I didn't have the wherewithall to consider where the help was coming from. I just needed help and I needed it fast. I am very sorry I didn't do as you obviously wanted me to. Now what I would like to happen is actually talk about WHAT happened, why it happened and how we can make sure I don't go through it again. And I would really like us to put as much time, energy and effort into addressing my illness as we have about why I called NHS Direct and not your office". She got on with things then. I hated having to get firm with her and I've never had to speak to a doctor like that.

She has referred me to an immunology department and hopefully I'll have an appointment in a few weeks time though I suspect it could be a while longer before I get a final diagnosis.

Before we parted she had to take the opportunity to remind me to call her office when I was feeling ill and needed help and not NHS Direct.

Weds 8th August

I've kept a food diary this week. As if I haven't got enough diaries to keep! I've got a exercise diary, a spending diary, this blog, other blogs, several twitter accounts, a couple of FB pages..... That's a lot to remember!

Anyway, I felt slightly ill tonight. The beginning of an episode but I'd say it was only about 5% in comparrison  to last Sunday

Thurs 9th August.

It was early evening and the symptoms came back. They were bad enough to pack a hospital bag. I started to worry that I would get a full blown episode like last Sunday.

I decided to take the doctors advice. I wasn't ill enough for hospital; I could still walk/talk/breath properly. Yet I was feeling pretty damn ill. I called my doctors surgery and spoke to the doctor on duty. I wish I hadn't bothered.

The doctor wouldn't come out. He sent a fax to my local pharmacy for digestion medicine; I'll put money that this is not digestion! I asked him what I should do if this episode got worse, should I call an ambulance? No. My illness is not life threatening. I've had the symptoms before and have not died so I don't need to go to hospital. Wow, thank you very much!

Thankfully, the symptoms went away after about an hour, and then I start feeling sorry for myself. Even if the symptoms only last a short while, they are too much of an interuption to my day. When I am in work mode, I want to be able to get on with things and not have to stop and start.

I was reading something only last week that said whatever situation you are in, even if you feel you have no choices, there is always something you can take control of, even if it's a small element and that's the basis of this blog. I can't find out the cure to what's happening on my own, but at least I can write about it and share my experience.

Sunday 12th August

I was all cosy at home and was getting settled and comfy to watch the Olympics closing ceremony. I even treated myself to a fruity cider - party!

Though I will add that Kopparberg didn't make me ill!

Then at 9.15pm ....CRISIS! 

Fifteen minutes into the Olympics closing ceremony and I started getting the symptoms of an episode, and very quickly I felt very, very bad, and as the minutes ticked by I felt even more ill. I didn't wait long before I dialled 999 and called an ambulance for the first time (defying what the doctor had said to me on the previous Thursday).

I could barely speak but I asked the lady on the phone when the ambulance would arrive. "They have been notified and they are on their way", is all she would tell me.

I remembered the advice of my Mum, and whilst I was still able to, I unlocked the front door and left it slightly open. If I passed out or couldn't open it at some point, I guess the paramedics would have had to break it down? I'm not sure. But it's a tip worth remembering if you are ever really ill at home and you have called for help.

As soon as I had done that I had to lie down on my bed, and a minute later a paramedic had arrived. He knocked on the door and called out, but I was too weak to reply but thankfully he just came on in anyway.

Whilst he was doing paramedic-y things, he asked me tons of questions. I could just about manage to nod or shake my head. It was strange really, I could hear and understand him, yet I was struggling to be able to communicate back.

He gave me some gas and air. Another first. You have to take really deep breaths to even get any of the gas and air inside of you and I found it took a huge effort, but I tried and I think it worked as the pain started to subside and I 'came round' and was able to actually speak and have a bit more of a conversation.

It was decided that I should go to A&E. Another top tip from my mum was to pack a hospital bag just in case. Well, the 'just in case' had happened and I had my bag packed and ready.


Monday 13th August

Waiting in A&E was horrible. Even though I was given a cubicle to wait in, it felt like I was there for an age before I was seen by a Doctor and during that time I got worse and worse. The gas and air has disappeared with the paramedics and I was in so much pain and so exhausted. Eventually, after 1am, a Doctor arrived. She was the same doctor that had seen me the previous Sunday in A&E and she remembered me. 

I was given about 6 types of tablets over the next hour I was wired up and they did four ECGs. The results of the ECGs weren't coming out as well as they should so they called a cardiologist out from his home and he arrived at 3am. 

"You may have had a heart attack", he tells me. 

"In that case, I've had four this week!", I replied. 

"Then maybe you haven't had a heart attack", he smiled back. 

Well, that's a bit of good news!

Then it was time for my very first intravenous line. At least it was pink! 


I was given more tablets which I just took without question. 

"How is the pain on a scale of 1 to 10. Ten being the most severe". I was asked this every so often, and I would think to myself, "Hmm, I wonder how my pain feels compared to being shot in the tummy, or stabbed". None of the tablets were reducing the pain. 

Taken at 4am. One for the 4am Project I thought at the time
At around 5am I was told I had a place on the cadiology ward. They still weren't sure what was wrong with me and because of my wonky ECG readings they thought that would be the best place.

I was wheeled along the corridors with the neon lights above me whizzing by - just like you see in the movies I thought.

The ward was dimly lit and so quiet. A welcomed sight after the glare and noise of the A&E department. A lovely nurse met me with a sympathtic smile and helped settle me into my new surroundings. I was given more tablets and I tried to get to sleep through the pain. I drifted in and out of sleep, just through sheer exhaustion at this point, and then around 7am the ward started to come alive with the clatter and chatter of nurses and the start of a new day.

I wasn't allowed to eat or drink anything. The pain was still there and hadn't subsided at all, and I was hooked up to a drip of some sort. I was so weak

I think it may have been the paramedics who put the notion of morphine into my head, I'm not sure. Anyway, someone mentioned it when I was first in A&E. So I asked the nurses for some. I had never taken morphine before, but I'd heard of it and from the little I knew it sounded like it would do the job and kill the pain I was in. By mid-afternoon and I had my first taste of liquid morphine; not pleasant really, kinda like a really bitter cough medicine. It was followed with an anti-nausea pill which I didn't really think too much about at the time, but an hour later I found out why!

I've never felt so ill, so sick, so nauseas! I was shaking and shivering and feeling so, so sick. It was horrible. This only lasted for about 10 minutes though and afterwards, like a miracle (or it felt like it at the time), the pain had gone! At last. Weighing up the nausea against the pain, it was worth going through it to be out of pain for the first time in 18 hours.

There was no rest for the wicked though and a while later I was taken, bed and all, to have an x-ray and a scan. I was still really weak and tired. I remember waiting to be taken into the x-ray room and lying on the bed facing the really bright lights of the room and drifting in and out of sleep. Awake, asleep, awake, asleep. At least the pain had gone.

It was during the scan that I got my diagnosis. Well I never! It was gallstones! A few tiny stones.

Oh! I never expected that. So that's what the trouble is.

Now I've read a bit more about it, what I think happened is a stone got stuck in a duct somewhere and then my gallbladder got inflamed and that's how I've got to this point and the diagnosis of Cholecystitis.

I really wish I had managed to diagnose myself somehow instead of thinking it was a wheat allergy - though it was a co-incidence that when I stopped eating wheat the symptoms went away. Though how could I be expected to diagnose myself when the GP failed to do that on two occasions?

When I watched this video when I got home, I was thinking 'Yes, yes! They are all the symptoms I have!'



I got back to the ward, but I still wasn't allowed to eat or drink and I was feeling even weaker. I asked if there were any calories in the drip and later that day I was given glucose which I think helped with my energy levels. Well, I wasn't exactly leaping out of bed, but I felt a bit more alert.

The whole day was passed in a bit of a haze and ended with a new IV line, this time in my hand.


I told my Mum not to come and visit me, but I would see her the next day.

Tuesday 14th August

I was told I could drink and eat! Hurrah!

Instead of going for a Full English, I decided to break my fast with some fruit and asked the breakfast lady if she had any. She went away and came back with the nearest thing she had to fruit.


Oh, I was joking about the Full English btw! And I wasn't quite ready for fruit juice (too acidy I thought) or yoghurt (too milky). However, a very kindly nurse had overheard my fruit request and offered me an apple and a pear.

My first meal since Sunday!


It took me an hour to eat the pear. It was really hard too. I wish I hadn't eaten it though as I started to get pains in my tummy again. I was back to nil by mouth. I couldn't even drink water as the thought of it made me feel sick. More drips. More tablets. More glucose.

My brain was still a bit not with it and I got myself all contorted pressing around on the buttons for the bed settings. I wasn't comfortable at all! I buzzed for the nurse, who got me sitting up again. "Is that ok?", she asked. "That's great. I can take it from here", I replied, like it was some big achievement!



The highlight of the day was my first visit from my Mum. She had been to my house and collected a few bits and pieces. It was great to see her and have a fuss made and it really made my day. I didn't want any other visitors though. I just wasn't up to it. Mum would understand if I said 'I can't talk any more now', but it might seem a bit rude to close my eyes when someone had gone to the bother of visiting me.

Wednesday 15th August

Still no food, but I was allowed some clear liquids. I had a selection of drinks; water, orange squash, and vitamin water. I wouldn't ordinarily buy vitamin water, but it had been so long since I'd eaten I felt like I really needed some nutrients, plus it had calories and I really needed the energy too. It seemed to help.



I slept really badly and was still so exhausted. I'm used to living on my own and having my own company. It's quiet. When I switch off the lights and go to bed it's dark. The hospital ward was a different environment altogether. It never got dark, even though the lights were dimmed at bedtime. There were the beep, beep, beeps of the machines. There was the chatter of the nurses, and the patients too. There was very little privacy, so I kept my curtain closed a lot and sometimes the nurses would come along and offer to open them up again so I would agree for a short while. Plus there were the visitors twice a day. There were about 8 patients on the ward, so that's a lot of visitors. When all I wanted to do is sleep, it was all a bit too much.

Just when I was starting to feel down about it all a nurse asked if I was ok. I told her how tired I was, and how little sleep I'd been getting and she offered to put me in my own room! Oh THANK YOU!! I felt happiness for the first time. Or maybe it was relief. Either way thank you, thank you, thank you!

It was a windowless room, but that was fine by me. There weren't any windows that I could see on the ward anyway. I could adjust the lights how I wanted. I could shut the door and keep out the noise AND I had a curtain I could pull around, and my own bathroom. It was just what I needed.

My Mum came to visit again. She had tweeted that I was in hospital and that I couldn't tweet. She sat in the chair next to by bed and read out all of the lovely tweets sending me get well wishes which really gave me a boost.

I slept so well that night. I was relaxed a bit for the first time since arriving in hosptial.

Thurs 16th August - Saturday 

It was all change!

When I asked why the doctor hadn't been round that morning, I was told I was going to be moved to the Gastric ward (I should have gone to the Liver ward, but it was full so the Gastric was helping out).

I was a bit disappointed to be honest. I was quite liking my room and felt very settled there.

I was wheeled along the corridors and shown my new ward. It wasn't so bad actually. There was a window! I hadn't seen outside since Sunday. There wasn't a great view, but there was definitely daylight an a corner of sky.


It was a 4 bed ward and there were 3 other females already there. I felt like the new girl. I wasn't sure of the social ettiquite in a hospital ward. Do you say hello? Ask what's wrong? Wait until you are spoken to? Say nothing? In the end I just observed for a little while, and tried to suss out who was who, and then I just joined in a conversation two of the ladies were having. That seemed to work!

I was told I could eat and drink clear liquids! This was good news of course, but I was having trouble even with the smell of food. It made me feel sick, but I was brave and ordered the blandest thing on the menu.



I managed the ham and cucumber and a spoonful of the fruit. It was a start
Then it was dinner time. Again, I went for B.L.A.N.D


Overall, even though the ward was smaller, brighter and quieter than the previous ward, I wasn't very happy here. I felt like I had to really direct the nurses as to my treatment. I had to constantly push, push, push to get anywhere. It was just as well I was feeling a bit better and able to do that, but instead of relaxing and concentrating on getting better I had to really focus on staying alert to keep on top of things, which was tiring in itself.

A few of the incidents:
  • I wasn't given the medication I was due on several occasions. 
  • A whole day went by without me being seen by a doctor. 
  • Twice my IV line went wonky, once in my hand, and once in my arm, and the liquid was going into my flesh rather than a vein. This made my hand/arm swell and it caused pain. I buzzed for the nurse, but they were so long in arriving, I just detached the drips myself. 
  • A nurse dropped the end of the tube of the drip on the floor, and then tried to attached it to the IV line in my hand. I had to stop her and point out that it had been on the floor. She whisked the fluids away, but they was never replaced, so again I went without medication I needed. 
I never knew what was happening, what the plans were, or how I was doing really. The doctors and nurses were so busy. Sometimes it felt like I was just parked on the ward. Thank goodness I'm able to speak up for myself, but I would worry about someone else who is shy and more reserved. I think it all boils down to the nurses being so busy and there simply not being enough staff to go around all the patients. Though I am very grateful to all the nurses and doctors there who got me back on my feet and well again. Thank you!

It's amazing how small your world becomes in hospital, and how quickly it happens. Soon it's reduced to the few personal belonging you have around you, and the hospital clock that marks breakfast, lunch, dinner and visiting hours. The 'outside' world seemed further and further away. I wasn't part of it. I couldn't worry about it. 

I took little bits of pleasure where I could. 

Like the time I got 'upgraded' from a polystyrene cup to a plastic one!


Or the 'secret' room I found. It seemed to be a bit of a storage room, but it was a room with a view! I could see people and cars and a great big sky. It was only a little room, but it was a place I could retreat to and be on my own and watch the world go by. 


Or there was the morning when I woke up at around 6am and I went to my secret room and saw the sun appearing on the horizon. 


That same morning I decided to take a walk down the corridor. It was so, so quiet. 


I went down the corridor and through a set of double doors and found myself in an empty corridor. There were rooms going off either side, but they were examination rooms. I walked to the end of the corridor and I could see people walking by. I pushed the doors to try and open them, but they were locked. I gave up and wandered back, but the doors I originally went through were locked too. I was trapped! At first I thought it was quite amusing. I had my phone with me and was going to do a little video or something, but I only had 2% battery left. And then I ran out of energy and needed to lie down and started to wonder if I would ever be found! Actually, after about 5 minutes I spotted a nurse and I banged on the door and made her jump. "You are not supposed to be in there! How did you get in? Those doors are locked." "I just pushed the doors and they opened." And that was enough excitement for one day.  

Saturday arrived with the news that I could go home! I was SO happy! I packed my bags and sat on my bed waiting to be officially discharged and get my paperwork. Then it was time to make a break for freedom!



There's no place like home! I was still quite weak but my Mum came straight over and stocked me up with home cooked meals so I wouldn't have to cook. I hadn't the strength to even boil the kettle. I was wiped out for a whole week, but thankfully not in pain. It wasn't unusual for me to sleep for 10 hours. I couldn't really do anything. I tried going out for walks, but I think even that was too much too soon, but I was worried that if I didn't use my legs, they might stop working lol. Thank you to my friend Ben for coming out on a couple of short walks with me and being my walking assistant! 

I hadn't switched my computer on for more than 15 minutes in 2 weeks. Amazing! I can't remember a day since I've been online that I didn't see what was happening, but I just didn't have the mental energy. I had my phone to keep in touch via twitter but other than that I didn't go online at all. 

My mum was great at keeping all my twitter friends up to date whilst I was in hospital. I was very moved by the lovely Lorna Prescott's blog post called Karen and Margaret about how my mum was using twitter to update my friends. It's such a lovely blog post and my mum did a great job. Thank you Lorna! And thank you Mum! My mum couldn't have done more for me whilst I was ill and I don't think I'd have got better as fast as I did without her help. 

Thank you to the talk about local team for their well wishes, support and the most beautiful flowers which really perked me up!



Thank you to all my lovely twitter friends too! All the tweets of support and well wishes and offers of help really gave me a boost and it's good to know that I only have to reach out on twitter for help from my wonderful friends. Thank you!

Now I FINALLY have a diagnosis, what next?

Well, I need to have a think about whether to have my gallbladder out. It would be my first operation. I need to weigh up the pros/cons of having the operation. I'm waiting to get an appointment from the hospital to go and have a chat with the doctor about the procedure.

In the meantime I can't eat fat. After 2 years of avoiding wheat as I thought that was the trigger to my 'attacks', it turns out to be fat! So very, very, very low/no fat cooking/food from now on.

Which means I can now eat wheat again! I had my first slice of bread in two years yesterday. And I liked it and it didn't make me ill. It's a shame that now I can eat wheaty things like cake, that I can't eat fat so still no cake for me haha!

Now I'm getting back into the swing of things and starting to catch up and get things done. It feels great to be productive again! :)

UPDATE 5th Oct

I got a phone call last Friday asking me to come into the hospital on Tuesday to see a surgeon about the Next Step.

I love this fruit and veg stall outside the main entrance to the hospital. I'm not sure you can bring flowers into hospitals any more. I didn't see any during my stay and they aren't sold in the hospital either. I would imagine that years ago there would have been a flower stall outside the hospital instead of a fruit and veg stall.


The bust of Queen Elizabeth greets you as you enter the hospital. My twitter friend @katieinthehat asked
And I think she is! Bought from the fruit and veg stall now doubt. Or rather it was probably a gift.



I am a relative stranger to hospitals and the 'system' and I was very pleased to see loads of people hovering around in blue tops ready to answer questions and set people in the right direction. I was told I could check myself in. 
















I pressed a few buttons, got checked in and the screen told me to go and sit in a blue seat. Luckily an keen-eyed helper was nearby who was able to stop me in my tracks as I headed in the wrong direction. 

"That's the green seating area", he said. 

"Oh, I thought they were turquoise. And turquoise is kind of blue."

I can understand how old people get confused! 

The picture of health right?!
I finally made my way through corridors and waited to be called into the see the surgeon. 

I had made copious amounts of notes and had lots of questions for him. I pulled my seat up to his desk (it was practically 3 feet away and kind of in the middle of the room) and set up my iPad and got my notebook and pen out. I was not leaving there until I had an answer to everything!

The upshot is that he dismissed my enquiries about alternative treatments such as removing the gallstones (oh I saw them on scan. Tiny. I'm not impressed with them at all!), lasering them, dissolving them. No, no, no. If any doctors performs those treatments now they should be struck off! 

The plan is that I will go back and have a NUCLEAR SCANNING TEST!! I'm really quite excited about as I'll get injected with RADIO ACTIVE TRACER!!! I can only imagine that afterwards I will have some super human powers and I'll be like Wonder Woman or Bat Girl. I'll have to start thinking of a name and register the twitter account. Where do you get super heroine outfits made.....

The test will give the doctors a closer look inside me. See if my gallbladder is damaged/scarred from when it got poorly. The test will also show my gallbladder in action so we can see if it's doing what it's meant to do and they can have a better look at little stones. Then we (ME) will decide what to do next. 

The highlight of the visit was going to give some blood for tests and seeing a DINOSAUR torniquet! The nurse said she did have a Dracula one, but someone stole it. 


Thank goodness I am feeling great again! It's hard to think about having an operation when you feel in good health. When I was in hospital for the week, if the doctors had told me they were going to remove my gallbladder I would have handed them the scalpel!

It was two years ago this month that I had my first 'episode'. Can I go another 2 years or more without another episode? Can I manage this myself? For a while anyway?

Food wise I have gone eating zero fat for the first few weeks that I was out of hospital, to around 7 grams a day, and now I'm having about 18 grams per day in total. I'm trying to build up my confidence again with food. I thought wheat was the trigger for these attacks (the episodes stopped when I stopped eating wheat, but that was just a coincidence), and I have avoided it for 2 years. Now I can eat wheat again (Hello Bread!) but have to watch the fat levels.....

I wrote a letter to the doctor at my surgery who refused to come out to see me during one of my episodes, left a prescription at a chemist I couldn't get to, and told me not to call an ambulance (this was after one of the other doctors told me not to call NHS Direct but to call the surgery out of hours if I needed help). 'That's the best I can do', he told me over the phone. To cut a long letter short, I told him that was far from the best he could have done for me, that he was arrogant and dismissive and I find those traits very dangerous for a medical professional. He phoned me the day he received my letter and immediately apologised; if he hadn't, and he called with the same arrogant attitude that I first encountered I would have made the complaint official. He said there was no excuse for how he managed my call and his decisions and that he was wrong. He explained how much budget comes into it, how much it costs to call ambulances out, and how, given their official 'guidelines', it would have been presumed that I could have got myself to the hospital or chemist. For example, I'm not an elderly patient who is house bound. We spoke for about 90 minutes and I'm satisfied enough to just leave it at that.

For years and years I've been paying into a private health insurance plan. To be honest I haven't paid much attention to it. It's only a few pounds a month and I forget it's there. The other day one of their magazines came through the door which jolted my memory about this medical plan. I gave them a call to see what I'm covered for and it seems I might be covered for a gallbladder op. IF I decide to have the op (and at the moment I feel fine so I don't want to) then the advantages of going through them is it could be quicker than waiting on the NHS waiting list (though I have no idea how long that is - I forgot to ask), plus (and here's the draw lol), it would be a private hospital and I do like a bit of luxury! And that's another thing, the timing of the operation (if I have it). How will the timing affect my plans, my work, and other things I want to do. I'll have to bear that in mind when taking all this into account too.

In good news I have had alcohol! Whoop! I gone right off it for some reason, but I had my first cocktails last night, and they were goooooood!


So, bottom's up! Cheers! And have a great weekend! :)

UPDATE  7th November

Yesterday I had an appointment at the Queen Elizabeth Hospital with the Nuclear Medicine Department. Nuclear! How exciting!

Even the corridor to the department seemed a little brighter than the other corridors. It was glowing even! ;)


The waiting area was much nicer than the few other waiting areas I had been to in the hospital.

It was well stocked with magazines.


And there were a selection of drinks on offer. 


Though not just anybody could have a drink! 


I was very taken with these signs



One of the machines had broken down, so I was called into the treatment room a little later than I was expecting. I wasn't expecting to see this huge machine!


I'm not sure what I was expecting to see really, but I just presumed I'd be sitting up on a regular type bed - I'd brought a book with me to read. 

The nurse was really friendly and she told me what would happen. I had to lie still for 90 minutes whilst the machine scanned my insides, but first I needed an injection of radio active liquid! I didn't watch it go in and it was only a small amount. The nurse said it was called technician dye. 

I got myself comfy, well as comfortable as I could. I had to keep very still for the scanner to do it's job properly. I could see a screen above my head which show the dye going in my arm and hitting my liver and shapes began to form. I couldn't get a photo of the screen as the nurse said I shouldn't use my phone. 

The time passed quickly enough. I told myself it's not often I stop and do nothing so it wouldn't do me any harm to chill out and relax.

Half way through my chill out time and the 90 minutes xray session I was given a banana milk shake to drink. 

Mmmm Scandishake Mix Milkshake

I'm not too fussed about milk and the novelty of banana flavoured milk ran out very quickly so I only drank about half of it. The nurse said it was low fat but I reckon (from looking at the Scandishake website) that there was about 30g of fat in the whole glass. I was feeling a little nervous that the fat would trigger an attack. Thankfully I feel good and it's bolstered my confidence a little with regards to watching the fat contents of the food I'm eating. 

Next step: I go back to the hospital next week for my results. Keep your fingers crossed for me! I really don't want to hear the I need to have an operation!

The Final Conclusion! 14th November

I finally have the diagnosis to my mystery illness.

After all this time, 2 years in total what with one thing and another, after mistakenly giving up wheat for 24 months and spending a week in hospital, I can tell you that I have......

A MYSTERY ILLNESS!!

That's right. I am undiagnosable.

Yesterday I went to the hospital for the results of the scan that I had last week (see update above), and saw a very nice doctor who said my symptoms were atypical. My liver and gallbladder are fine and are working as they should. I have a few tiny gallstones, but lots of people have them and don't even realise. They are very common. My symptoms (when I have had these 'episodes') don't match with gallstone symptoms. (Though if you ask me I think there are similarities).

Luckily I have felt fine since I left hospital. If I have any more 'episodes' (and 2 years passed between my first attack and the second in August this year), then I am to go to my GP and take it from there.

So the good news is I don't have to have an operation and have my gallbladder removed! I did not want to have an operation.

The bizarre news is that I don't have a diagnosis.

Looking forward, I've just got to get on with things now. I guess all this has been on my mind for a few months and I have to just forget about it and get on with life and take things from there.

Since leaving hospital my eating habits have changed a little. I don't like being told what to do, even if it's for my own good, so I've really resented eating low fat food under the doctors orders. I've done it, but under duress. Now I've had this (non)diagnosis, if I eat low fat, it's my choice and not because I've been told to and I feel better about that already! I'm back in control again. Yay!

I'm not even sure what more to say. In a way it's a bit of an anti-climax but at the same time, I can try and have faith in the medical peeps and trust that there is nothing seriously wrong and press the 'play' button on my life again!

I can't end this mega blog post without saying thank you to everyone who has been kind enough to send good wishes and has shown an interest in all this. I've had so much support, kind words, offers of help and it's been amazing and I really do appreciate it. Thank you! :) x

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13 comments:

johnpopham said...

So glad to hear you are on the mend, Karen. I can't believe I missed your drama, please accept my best wishes for your recovery.

As someone who has had extensive dealings with health professionals, a lot more through the illnesses and conditions of relatives than my own. your experience rings true in that, very often people know a lot more about their own bodies and what might be wrong with them, than professionals do. They need to learn to listen!

Karen Strunks said...

Hi John,

Thank you for you lovely comment and best wishes.

It was certainly an experience and a half! It's certainly alerted me and that I will have to be more aware of what's going and not just get swept along with the 'doctor knows best' mentality, or be ignored or dismissed. A fine balance!

Elizabeth said...

Thanks for making the effort to write this up -- it's a good record for your own sake, and I believe it's useful to share information like this. Good tip about leaving doors unlocked for paramedics. Well done for taking so much into your own hands! Always a good thing to do in any case ... but I'm sorry it was a necessity in this one. Fancy being told off by the doctor for ringing NHS Direct... poor show. Well done for speaking up so assertively and confidently. *Takes notes.

Karen Strunks said...

Thanks Elizabeth. Agree that it will be useful to have a record. The whole experience has made me realise how aware I will have to be in the future and how important it is to be fully informed at every stage. x

Rickie J said...

Firstly I am so glad you are back with 'us' and on the mend!
But I can't help but feel angry for the way you have been treated - there has been loads of wrong doing and I'm shocked!
I had something similar a few years back & even ending up in A&E didn't get the problem diagnosed over a couple of years. It was only after I moved from Milton Keynes (hell) to Bedford that my new doctor diagnosed me with asthma but I wish I kept a record of every time I went to the doctor/hospital in MK who told me to take Nurofen (Ordinarily I never take any 'drugs') I do hope you report this to NHS bosses and prevent this happening to someone else. Hopefully some good can come off your terrible treatment when you were so poorly. x
PS Hopefully there isn't a next time but do alert us if you're poorly and need help, happy to come over with (M&S) home made food & be walking partner!

Karen Strunks said...

Hi Rickie!

Very kind of you to say. Thank you.

Sorry to hear of your over due diagnosis! And such a serious ailment too. I'm shocked as well. Thank goodness you moved, but it shouldn't have taken a move to get you diagnosed.

I've started a complaint, but even that seems slow going!

Thanks for the offer of M&S goodies and walks. It's great to have such a brilliant support network. Very reassuring! :) xx

Travellingcoral said...

It was so good to see you up and about last week, but I think the treatment you have had has gone from truly shocking to appalling, and inconsitent overall. I hope the NHS see this. Thank you for sharing this. I am sure it will help others. And yes Lorna Prescott's blog was brilliant and I'm lucky enough to have known her for quite a while. Oh, and your mom is brilliant!

Karen Strunks said...

Hi Coral!

It was great to see you too.

A couple of times the surgeon just said 'It's the NHS' in a resigned way in response to a couple of questions (why did my appoint take so long, will I see the same people throughout any future treatment).

I'm glad I'm keeping a record, (my memory might let me down!) and a few people have said it's a help to them too. Going through the 'system' can feel a bit scary at times!

Aw, thanks! I will tell my mum your kind words. I'm sure she will come along to the social media cafe again.

See you soon! x

Elizabeth said...

Banana milkshake! Mmmmm. That's so disappointing that the nurse only could tell you it was called "technician dye", when here's you, all camera and questions and blogs. (could they have a more sincerely interested patient??)

That's awesome that you wrote to the surgery. Good on you! It must have felt hugely cathartic, and good has come from it. The doctor got pulled up but did apologize and will probably be more self-aware in future. You had a big dose of validation and learned that it's worth the effort of speaking up bc sometimes people do try to make it right. Well done, girlfriend!

Elizabeth said...

Oh, ps, that's awesome that you could watch the dye trace around! I mean, that's icky. Neat! icky! :-D

Karen Strunks said...

Hi Elizabeth! The way the nurse pronounced it was like 'techneeechian dye' which made it sound a bit different from 'technician dye'. So that gave me a little bit of hope that I was getting somewhere with my questioning. So I asked 'How do you spell that?' and that's when disappointment hit. 'Yeah, but which isotope is being used? Is it iodine...or carbon.....'. The nurse replied 'It's just technician dye'. And I let it at that.

When I was injected I could see the dye going along my arm. A bit cool! And then when I drank the milkshake I could see it going around my intestines. Weird!

I wasn't in a fit state to argue with the doctor, or stand up to him when I needed the help, but I'm very glad I made myself very clear to him. I do think he will be more aware of his behaviour now.


Liz Broomfield said...

I'm horrified at some of the "treatment" you've had but not surprised, as I have had some shocking experiences myself.

I'm glad they have given you the full tests and seem to have looked at it all carefully. Did they consider IBS and similar as they can be far more debilitating than people think ... anyway, I'm sure you've considered all the alternatives.

And I don't live far away, so if you ever need looking after if you get an episode, just get in touch, please.

Liz x

Karen Strunks said...

Hi Liz,

Thanks for following the medical saga!

It's not IBS though the Doc said that's where they put a lot of undiagnosed people!

Thank you for offer of help. I wouldn't inflict that on anyone. It even worries the nurses and docs haha :) x

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