To my liver doctor

To my liver doctor,

I really, really hate seeing a new consultant. I’ve had some bad experiences in the past where I’ve been belittled and blamed and made out to be making up my problems, exaggerating my symptoms or been told I ‘clearly have something wrong mentally’. Where people have refused to treat me and have literally slammed the door in my face. So I was really anxious about seeing you for all of those reasons, but also because you’re a new speciality to me and I don’t really know what livers do.

My GP referred me to you because an ultrasound told me that I had a moderate-severe case of non-alcoholic fatty liver disease, but that’s all I knew. I’d done a bit of research about it and added some liver friendly foods into my diet in case they could help reverse some of it. I’m well aware that having something like a fatty liver at my age, when I don’t drink alcohol and I have a balanced diet is *not a good thing*. So all round, I was pretty wound up about what you might say. And I was really, really worried you were going to lecture me like others had in the past, telling me I’d brought my problems on myself by being overweight and taking steroids.

I needn’t have worried. For a start, you were really friendly, despite it being what us teachers would call ‘the graveyard shift’ on a Friday afternoon. You introduced yourself (rare) and asked me to introduce my husband. I usually do introduce him to doctors, but it’s rare anyone actually asks first. I also really liked that you called yourself a ‘liver doctor’ rather than a hepatologist. Already I could tell that you wanted me to understand our consultation and you actually cared about me as a person, and not just as a walking bunch of blood results and an ultrasound scan. I got the impression you wanted to know about all of me, and not just my liver.

You asked me to clarify my diagnoses and medications lists. Not just because you needed them for accurate note keeping, but you said ‘so I can compare them with the ones I’ve got here’. You’d read my file. This hardly ever happens, but you knew about me having been to various consultants and having had emergency admissions. You noticed that I’d written my hydrocortisone dose as a different one from your record and asked about it and you didn’t give me the deer in headlights look when I talked about baselines and stress dosing for my adrenal insufficiency. You even knew what the correct baseline is for my weight.

At this point, I felt the tightly wound spring that was coiled up in my insides release. I was amazed, like cartoon mouth drop to the floor amazed. I wasn’t going to have to spend 5 minutes explaining what adrenal insufficiency is, what the treatment is and how steroids are for life and that I can’t ‘just stop taking them’. I wasn’t going to have to go over some pretty traumatic hospital admissions for the ninety-fifth time. You’d read my file. You know about my illness. In short, I knew you had this covered. I didn’t feel like I had to ‘test’ your endocrine knowledge like I usually do, trying to suss out if you do actually know or you’re just pretending you know. I was so reassured, I felt calmer, I didn’t feel like I needed to be ‘switched on’ the whole time. I could actually be like any other patient at an appointment- listen and ask questions.

You had a sense of humour. I confessed while you were examining me that I didn’t really know where my liver was until recently and how I’d done some reading about it but was still pretty clueless. You made a joke about it and then asked if I had any symptoms. I was a bit hesitant to bring up my ‘quirks’ in relation to my reading, but you gave me the confidence to tell you all of my backwards stuff and let you decide what might or might not be relevant. And then you didn’t once patronise me and tell me I was wrong or that I’d misunderstood- you recognised that I’m an expert patient and I can identify trends in my health. You took what I was saying as it was meant to be; a patient reporting what she’d noticed, even if it’s not what textbook normally happens. You looked at the graphs on my phone of data that either I’d inputted or my Apple Watch had collected. You really got my steroids. You understood what I was saying about how I get bad gastric symptoms when I taper and suggested that maybe we needed to put Inflammatory Bowel Disease back in the mix, since my steroids might mask the inflammation. You made it clear that you knew that I don’t have a choice about taking steroids and didn’t make me feel bad about being on them, which was so helpful. Usually I just get told by non-endos that the steroids are the problem and unless I stop taking them things won’t get better, with a pregnant pause while they wait to see if I respond with ‘oh well I’ll just stop taking them then’ (which will never happen). You didn’t do that.

I was also immensely grateful that you said I have a fatty liver because I’m overweight and on steroids but that none of that was my fault. It was what I was worried about and what I was expecting you to say, but you didn’t remotely imply that I’d brought it in myself. In fact, I was happy that you praised me for having managed to lose a bit of weight! You communicated to me that you knew I was trying my best and that the problems giving me fatty liver were a consequence of having adrenal insufficiency, not because of anything that I could control. You said the hard stuff that needed saying- I’m young but overweight and have various complex illnesses and that combination isn’t good. That fatty liver is usually a sign of other bits struggling. But I also felt more calm about the fact that it’s pretty depressing having a disease that most people only get when their body is on its last legs in old age. There was something about you that said ‘it’s a bit crap, but I’ve got it. I’ll worry about your liver, you worry about the other stuff’.

I actually left the appointment with no progress made. You said I needed a more detailed scan to see the extent of the damage to my liver and if it had scarred or not. My LFTs in my blood work had improved, and you congratulated me on that. But you said we needed to try to work out what’s going on and said I maybe needed retesting for IBD. You had it covered.

Normally, I leave consultant appointments needing to cheer myself up. Usually my husband and I end up in the Macdonald’s on the way home from the hospital. I didn’t feel the need to bribe myself to get through the evening with treats, I wasn’t anxious, pissed off or crying, like I usually am after appointments. Don’t get me wrong, other doctors might be good in their fields and order tests (perhaps with a bit of arguing), but I don’t usually feel cared for or like I’m moving forward. I usually feel like a lot was riding on the appointment and feel deflated that nothing had changed except the promise of more tests. That I’d just go back to my life of waiting around for the next appointment trying not to die in between, feeling terrible and having to pick my mood off the floor. Basically drag myself through the next few days after the appointment because I felt so demoralised and that things look bleak.

That’s how seeing consultants usually makes me feel. Except with my endo and now with you. We made zero progress in that consultation medically. Nothing changed and I didn’t know anything more than when I walked in. But everything changed mentally for me. You’ve got me and my liver covered and I know that, even if it is bad news. Someone else besides my endo ‘gets’ me and wants the best for me. Someone else acknowledges that I work bloody hard to be a good patient and that I’m not to blame.

So thank you for increasing my medical cheer leading squad by another member. There aren’t very many in the team, but some of the negative voices are slowly starting to be drowned out by the cheering ones.

Image: shutterstock

Seeing a liver doctor

I’m seeing a liver doctor this week. They’re actually called a hepatologist, but that’s hard to say and remember, and my phone autocorrects it to ‘herpetologist’ which is zoology! So I’ve been referring to them as ‘liver doctor’ for the past few months.

My liver is something that my endos have been keeping an eye on for the past couple of years. It’s been a bit grumpy with slightly elevated blood work. Livers do lots of things; they play a part in your digestive system and filter your blood and metabolise things as the main things. So lots of people with endocrine conditions also sometimes have liver problems, because the two are linked. And because some of the medications we have to take mess with your liver.

My Liver Function Tests (LFTs) always come back as high whenever I’m in hospital. So I wasn’t surprised when a very enthusiastic junior doctor told me this back in November. However, because he was so through in his discharge note, he told my GP about it, who then referred me for an outpatient ultrasound to check it was ok. At the time, we both said it was likely fine because the other liver ultrasounds I’d had were in the past, and I wasn’t having any symptoms and wasn’t bright yellow (jaundice), which is usually an indicator of liver problems.

So I was very surprised when it came back in March saying I had ‘moderate-severe Non-Alcoholic Fatty Liver Disease’ (NAFD). That’s when I got referred to the liver specialist. But the waiting list was 4 months, and a bit of research told me that fatty liver disease can be a problem if there’s liver scarring, as that can’t be reversed. BUT if it hasn’t scarred yet, the damage can potentially be reversed. Unhelpfully, the liver ultrasound didn’t say in its report what version I had.

You can get NAFD for a few reasons, including:

– diet. My diet is pretty good, because it has to be for my other problems. So unlikely.

– some medications. Steroids give you liver problems, but I was also on statins, which can also make your liver angry.

– genetics. A lot of my liver tests and other ones like cholesterol were coming back as ridiculously high despite my good diet, which made my endos think there’s a genetic element there.

– lifestyle choices. Alcohol obviously is one of the big reasons people get liver diseases. But I don’t drink any alcohol so it’s not that!

– being sick or having diahrrea constantly makes your liver grumpy. I’ve worked really hard to minimise all the diahrrea I’ve been having (diet, portion sizes, reducing heart rate) but it’s not been easy.

I’ve got into the habit of doing a lot of research into my conditions, mostly because I’m a bit of an anomaly and some of my illnesses are rare or unusual. So I spent a lot of time reading about livers after finding this out. And 4 months is a long time- who knows what extra damage can take place in that time? Especially as I hadn’t got any symptoms (that I know of- I feel terrible every day, so it could be my liver or it could be one of the other many illnesses I have!) I learnt that eating a liver friendly diet, exercising and making good lifestyle choices are ways to improve liver health. There are medications too, but I’d have to wait to see the consultant *if* I needed those. Since March, I’ve:

– started eating liver friendly foods, while also trying to fit them in with my low carb diet and intolerances. Which is actually pretty tricky! Liver friendly foods include avocado, nuts, healthy fats like olive oil, coffee (which I started drinking), seeds, green tea, oily fish (which I also started eating).

– cutting out as much processed food as possible. I’d already done this anyway but I got rid of some more.

– keeping an even closer eye on my blood sugar. Your liver dumps glucose into your blood from stores if your body is struggling to regulate itself. Which is handy, but if that happens a lot, it stresses the liver out

– I can’t come off steroids, but my GP stopped my statins, which were for high cholesterol. We just have to keep an eye on the cholesterol now too, but my liver friendly diet should help with that too.

I can’t exercise any more than I currently am. And even then I’d call it ‘exercise’.

I asked my GP to do some repeat liver bloods and they said today that although they’re still deranged (their words, not mine), they’ve improved since earlier in the year. Which is a good thing! However, my GP isn’t a liver specialist, and one thing I know from all of my endocrine bloods is that just because the computer says they’re mostly fine, doesn’t mean they actually are. Endocrinology is a lot more tricky than that.

I don’t really know what I’m expecting this week at the appointment. I’ve done a bit of reading, but without knowing if there’s permanent damage or not, it’s hard to predict what might happen. Ideally, they’ll say that my blood work has improved because of the changes I made so we’ll just keep an eye on it again for a little while. But we’ll see *fingers crossed*

What do you want your legacy to be?

TW: death

Most of us won’t leave a lasting imprint of our time alive. Most of us won’t be famous, or won’t do something noteworthy enough for it to be historically documented. There’s a saying along the lines of you die twice: once when you physically die, and another time when the people who remember you or talk about you die. The idea being that your legacy lives on in a younger generation, until they don’t exist anymore.

Which got me thinking. What do I want my legacy to be? How do I want people to remember me?

(I realise this might sound like I’m dying, which, as far as I know *touch wood*, I’m the same level of ‘sick’ as I usually am! But I’ve had a few near death experiences, which means I’ve had to think about it more than the average person does)

I think the temptation for a lot of people is they want people to remember their name, either for good reasons or bad. Criminals are sometimes remembered more for their heinous crimes than do-gooders are for their actions. Why do people who want to kill themselves go shoot school children beforehand? Because their name will be plastered all over every news outlet and mentioned in commemoration events for years to come. But why get het up on the masses knowing your name? Because that’s all that gets remembered- your name and a Wikipedia entry of facts about yourself. That doesn’t say much about you as a person. I’ve been to a couple of funerals where the eulogy has basically sounded like a personal statement on a CV. A list of achievements and places lived. But is that really the be all and end all?

Being chronically ill has taught me a few things, but one significant thing it’s made me realise is the fact that the little things are what make up your life. The big things might be exciting and make for good social media sharing, but they’re not the things which stick with you. There are people who have an impact on my daily life for really mundane reasons, but it makes me smile when I think about it. Which is silly, but I think of them every day, while doing my boring stuff. If they died tomorrow, I’d probably think about them every day until I died. Not a particularly glamorous legacy, but thinking of them makes me happy every day. And maybe other stuff they do makes other people happy. So isn’t that as good a legacy as a noteworthy achievement? I think of my friends:

– when I get Alexa to turn the lights on when I go downstairs. One of my friends gets Alexa to remind her to make her bed every morning, which I found amusing when she told me!

– when I make a cup of tea. Every day, I fill it up too much and can’t quite get the milk in. A friend found this funny when she saw me do it, and said I was ‘living dangerously with my tea making’. But I still do it every day, and every day I think of her saying it

– when I’m drinking my tea. One friend told me once that the best way to make a cup of tea is to wait until it’s ‘chugging temperature’ and then drink it in one go. I never manage to get it right! That person’s now since died. So I guess that’s part of her legacy.

– when I finish my tea. A friend told me that her brother waits until you’ve finished every drop from your mug before taking it from you to wash it up (he likes washing up). Whereas I always leave a little bit in the bottom of mine. No idea why! But I think of it every time I finish a cup of tea.

– when I walk past our record player and see the Gershwin record which me and my friend love I’m reminded of her.

There are many other things I remember friends for which make me feel happy. But those are the ones I think about every day. I’d like to think that I’ve had an influence or impact on someone else’s thoughts somewhere at some point each day, but I don’t really know how or to what extent. Is that a bad thing though? If I’m not looking for fame or fortune or a lasting reputation, does it matter if I *know* what type of legacy I’m leaving behind? Not really.

I want to be remembered for my characteristics more than my actions. It might be in recognising actions that people remember my traits, but that’s not what I want to be remembered for. People remember more of what they felt at the time of something, over the actual event itself. A CV of my life is boring, anyone can achieve ‘stuff’. Whereas having an impact on someone’s thought process or emotional well-being might not leave a lasting footprint for the world to see, but will make a difference to an individual, and potentially other people they come into contact with.

That’s what I want to be remembered for. How about you?

Tapering Steroids: On the Third Day

‘My steroids are a bit like Jesus. Stuff happens on the third day’

Believe it or not, this was a conversation I had with my husband 😂 in my defence, it was Easter weekend when I said it, so it was kind of relevant! I was trying to explain to him that I always feel worse on the third day after my steroids have changed. It’s particularly bad on the third day after having had an IV of steroids, because it’s such a big jump. But even a drop of 5mg hydrocortisone is enough for me to have a bad third day.

I instantly regretted making this statement because it prompted a week long (yes, seriously) debate as to how Jesus ‘didn’t really rise again on Easter Monday because that’s not 3 days from Good Friday’. My argument is you count the same day because it’s *on* the third day after (my IV for example). Aside from that, millions of Christians are not wrong!!

Anyway, the third day is always pretty awful when tapering hydrocortisone. I mostly just feel ridiculously tired, like struggling to keep upright and holding my head up type tired. And I’ll get things like stomach ache, dizziness, shakiness, sweating, grumpiness, weird blood sugar making me eat everything in sight, emotionalness, diahrrea if I’m lucky… there’s a long list. I plan my tapers around times when I know I won’t have to do anything on the third day after.

However. This time I was put on 40mg of prednisone after an asthma attack (another blog post on that) in addition to my ‘baseline’ of hydrocortisone. I was already in the middle of a hydrocortisone taper when I had the asthma attack, so my baseline was just what I was on at the time (20/10/5). I had to take the Pred for 5 days and then stop it.

I decided quite early on that stopping Pred suddenly would be a very bad idea. So I built in a 5mg/day taper because I had enough tablets to do that. Coming off steroids is really hard for anyone. They make you feel pretty super human while you’re taking them at that dose, particularly Pred. Coming off Pred with adrenal insufficiency is a million times worse and then the shock to your system can put you in adrenal crisis. So I ended up doing 5 days at 40mg, then spending another 8 days tapering 5mg each day. For context, 5mg of Pred is about 20mg hydrocortisone equivalent. So 40mg of Pred is about 200mg of hc.

I’ve had a lot of asthma attacks so tapering Pred is not foreign to me, although I hadn’t taken it for 4 years. Before I got diagnosed with AI, I was struggling to get below 30mg before ending up back in hospital. And I only managed to get off the Pred by being admitted to hospital for 2 weeks because it was so horrendous. The more you have of it, the more your body wants of it. You become steroid dependent. But if you don’t have it, it’s not just a case of doing a detox and you’ll be fine, it can kill you. So the fact that I’m now Pred free is in itself impressive!

Tapering hydrocortisone is *horrible*. Tapering Pred is *horrendous*. I can’t emphasise this enough. While I was tapering, I was really anxious, didn’t sleep much, really sweaty and shaky, had lots of stomach issues, felt like I was going to faint pretty much all the time, couldn’t focus on anything… the physical symptoms were pretty similar to a hydrocortisone taper, just a lot worse. Especially my pain levels and nausea, which were through the roof. I got through that week eating a lot of pain killers and crisps and coke. And the mental symptoms were horrible; paranoia, anxiety, depression, nightmares… I’d forgotten how bad those could be with Pred.

The good news is, because I’ve got so much more experience now, I was able to recognise that the mental symptoms were the steroids talking and kept reminding myself of that. It didn’t make it go away in any shape or form, but I could tell myself that it would be over after a week or so, which definitely helped. It was a horrible couple of weeks though. It also helped me be kind to myself- tapering steroids makes me stupidly hungry and if I don’t eat, it makes me have to go back to hospital (I tried ignoring it a lot years ago, it doesn’t end well). So I at least didn’t beat myself up for eating a lot and putting on a bit of weight again.

The other good news is, today is the third day since stopping Pred completely and I actually had a relatively normal day for me. I’m still in a lot of pain and I’m not sleeping great, but in comparison to a third day with hydrocortisone, it’s not been too bad! So it seems that hydrocortisone tapers take longer (more like a month) and I have really bad third days and not so great days in between, whereas on Pred every day is a bad day, but it only takes a week. Fingers crossed that’s the case anyway, and I don’t have a horrible day tomorrow!

Experience over the last few years really helped me this time around, but I was surprised about the third day thing not applying. If there’s one thing about this illness is that it definitely keeps me on my toes!!

I saw my gastroenterologist

I’ve been having stomach and gastro issues for well over a year, which kept putting me in hospital. I was still eating and drinking normally, but having diahorrea is bad for people with adrenal insufficiency, so I kept getting admitted to get it under control. But no one really knew what was causing it, so one of the doctors from my inpatient stay referred me to an outpatient gastroenterologist to rule out any problems. Everyone was pretty sure it wasn’t gastro driving my symptoms, but I had a faecal calprotectin (inflammation in your poo) test come back as high and my problems clear up when my steroids are increased and come back once I taper them. Both of those things can be a sign of an inflammatory bowel disease, since steroids are used to treat inflammation, so taking more to prevent adrenal crisis could help if I did have IBD (which I don’t!)

I first saw the gastro consultant in March, and he said he was pretty certain I have irritable bowel syndrome (IBS) but because I already have some rare conditions, he wanted to run some tests to definitely confirm that theory and to double check I didn’t have any other uncommon illnesses. So in the last couple of months, I’ve been poked and prodded a lot and had:

– 2 colonoscopies

– an endoscopy

– a Sehcat scan

an MRI small bowel

– blood tests

– stool tests

Which was a lot. The good news is, in doing all those tests, we can now definitely say I don’t have:

– IBD like Crohn’s disease or ulcerative colitis

– Coeliacs Disease

– any gut infections or illnesses

– something to do with my liver and bile acids not working properly

– any rare bowel illnesses (can’t remember all the ones he tested for).

And that’s how he diagnosed irritable bowel syndrome. There’s no test to confirm it, it’s an illness where the diagnosis is by excluding all other possibilities. The bad news is, there isn’t really a fixed treatment or diet which works for IBS, since it’s also a condition where no one really knows why it happens- we just know that in some people, the gut misbehaves (or gets irritable) and doesn’t work well, giving the person symptoms like pain, gas, bloating, diahrrea or constipation.

The good news is that I’d already been doing experiments on myself between appointments to try to work out how to get it to stop by myself. And hopefully avoid some inpatient stays. Things that help include:

– cutting out wheat/gluten and some other foods. I might not have coeliacs disease, but you can still be intolerant or get an upset stomach from eating certain foods, which, for me, is wheat/gluten (and a few other things). I definitely feel a lot less nauseous since doing that

– eating small portions. I don’t really eat meals, I tend to just eat small amounts of food every hour

– avoiding foods which increase my heart rate. Again, I’m not allergic to foods, but for some reason if I eat some things, it increases my heart rate and gives me diahrrea (go figure). Nuts, for example!

– drinking lots of water

However, and I’ve said this to most doctors for the past year, I get stomach ache and diahrrea when I do specific activities, when I taper my steroids or if the weather is particularly hot. For example, a warm shower will make me have diahrrea within half an hour, as will going upstairs too quickly, or standing up too long. It will usually happen between 2pm-5pm, regardless of what I eat. Those things, to me, can’t just be because of IBS! So I think IBS might have been adding to the stress my body is under every day, therefore making everything worse, but I don’t think it’s the full story. It’s too much of a coincidence that I don’t have issues on double my steroids, but I do when I taper, and that certain tasks make me ill. My theories are it’s endocrine or linked to my heart rate somehow- my heart rate is always higher on days with these episodes. But it’s a bit like a chicken and egg scenario- is my heart rate contributing to my diahrrea or the diahrrea making my heart rate worse?

I’ve been discharged from the gastro doc. I’ve already started doing the things that he would suggest trying, so any treatment is more about managing symptoms than implementing a long term plan. It was a pretty speedy appointment but I didn’t feel like he was fobbing me off, more passing me back to my endo since we can tick a box and say we’ve ruled out gastro illnesses.

Obviously I’m glad I don’t have anything more serious. But it does mean a hell of a lot of work for me to manage the IBS side of things on top of everything else I manage every day. But I came to accept a while ago that I won’t have the luxury of taking some pills and everything being magically fixed, my illnesses are all ones which require a lot of work to manage, sadly.

Next stop, liver consultant because that’s also being irritable which can cause gastro problems (apparently!)

‘Don’t you miss cake?’

This weekend, I went to two fundraiser coffee/cake events, one hosted by a church group I go to, the other by a friend at her house. But I don’t eat cake! Or rather, I can’t eat cake because:

– it’s not low carb and I have to watch my blood sugar

– a lot have gluten in, which I’m intolerant to (although the church morning did have amazing gluten free options!)

– a lot of the other ingredients often found in cakes, even if they are gluten free, aren’t very liver friendly foods

So I don’t really eat cake anymore. *Very* occasionally I’ll have a tiny amount of something my husband is eating, or I had birthday cheesecake and a friend bought me some mini cupcakes this year for my birthday. But on the whole, I don’t eat cake anymore. My blood sugar was too high for me to remotely even consider gluten free cake at the church event and my friend very kindly catered for me with a low carb alternative, so I didn’t feel like I was missing out. And I still had a lovely time at both gatherings! But not eating cake at a cake event is a bit obvious, so I got asked ‘do you miss eating cake?’ a fair bit.

Short answer, yes. Of course I miss cake! I used to love sweet things. Who wouldn’t love to indulge in something they really like?!

Long answer, not as much as you might think. Maybe it’s just me, but there’s a difference between following a diet like weight watchers where the goal is to lose weight but ultimately nothing really changes if you don’t lose weight, and following a medical diet like mine which helps to keep you alive. I tend to split it into 2 parts in my head. I follow my diet because:

1. Stakes are high. I’m not going to drop dead within a minute of me having eaten something I shouldn’t, but cumulatively, if I don’t follow my diet, it will make me seriously ill and shorten my life. My pancreas is already broken and does the opposite it’s supposed to, I’ve got moderate/severe non alcoholic fatty liver disease, my cholesterol is high, my adrenal system doesn’t work so my blood sugar suffers as a consequence, I’ve got intolerances, certain foods make my heart rate dangerously fast… and that’s when I follow my diet! Can you imagine the fallout if I ate what I wanted? Now, if that wasn’t a good enough incentive, there’s always the fact of…

2. There are few pros to eating cake. I would maybe enjoy it for the first few minutes after eating it. But then I’d start a rollercoaster of low to high blood sugar, I’d feel sick, I’d have stomach ache, I wouldn’t sleep later, my skin would itch and ‘shrink’, I’d probably get a migraine, my heart rate would increase so I’d probably get diahrrea as well… there’s a long list. So is it worth 2-3 days of nastiness for the sake of 5 minutes of cake? Nope.

But I *am* human and it can be hardwork being tempted by things like that. Because who wants others to view them as potentially ‘awkward’? And really, it would be great to join in with everyone else doing something normal for a change and not having to worry about it.

It’s a bigger picture thing. For me, if the ultimate choice is ‘if you don’t eat cake now, you might live for a month longer overall’, it’s a no brainer really. Yeah, it can be frustrating. But frustration is better than premature death! 😉

(Although if you do see me eating cake and point this out to me, you will probably be quickly shot down- if I’ve chosen to eat cake and I’m clearly aware of consequences, I don’t need the Pudding Police telling me what to eat!!)

Here are some photos of the amazing cakes people made. I enjoyed looking at them all and inhaling all the sugar 😉

When the NHS works well

If you don’t use the NHS very often, on the surface, it looks like it works. Or if it doesn’t, you can put it down to a blip. But when you use it as often as I do, it tends to not work more than it actually does. However, last week it actually worked the way it’s meant to from start to finish! The problem is, when one bit fails, it sets off a chain reaction to other bits not working. I’ve highlighted these in bold to indicate where things usually go wrong but didn’t this time 🙂

I started feeling ‘weird’ in the evening. My asthma had been a bit off for a few days and my BP suddenly went up a lot. So I dialled 999 even though I didn’t really know why, but I had my ‘I need help’ feeling. The dispatch asked for my address and asked what’s wrong. I said ‘I’ve got secondary adrenal insufficiency and I don’t feel well’. He replied ‘could it be an adrenal crisis?’ and I said I wasn’t sure.

He’d picked up on my red flag. The flag tells the dispatch that I have a life threatening illness requiring a fast call out. He also knew what it was for, telling me to do my injection while he talked to the paramedics he’d just dispatched to me. He came back to ask if I’d done any obs (I’d done BP, heart rate, temperature and blood sugar) so he could inform the crew before they arrived.

The crew had my obs and condition info before they got to me. This meant that they were able to come up with a plan before entering my house and could compare my obs prior to my injection with the ones they did. I think a lot of people take for granted the fact that there are very few jobs where you turn up to an unfamiliar place, with an unfamiliar person and often end up setting up and operating in tricky situations. So them having a plan before getting to me is a big help for everyone.

The paramedics took my info sheet and transferred the info into their iPad. So all of my meds, other conditions and emergency contacts were in the system before we left. It saves me having to repeat myself lots or them having to try to do it on the move.

We got to hospital and checked in. A nurse took the handover at the computer, so she could type it straight in rather than writing it on a post it note, like what usually happens, which ends up being a bit like Chinese Whispers.

The handover included me saying I’d felt ‘weird’ about my asthma as well as having SAI. This turned out to be really relevant since I ended up getting treated for asthma too. Experienced and non-arrogant HCPs recognise that someone with complex illnesses saying they feel weird is usually a bad sign, even if their obs seem relatively normal. When the ambulance arrived, my obs were ok-ish. By the time the nurse did them at hospital, my O2 sats were low and my bp and heart rate high again. People were listening to what I was saying and acting on it, rather than just focusing on numbers. The other thing is, I don’t have textbook conditions. So I tend to be the exact opposite of what people *do* actually know about my illnesses. The staff paid attention to this when I told them about it, rather than telling me I was wrong.

The nurse remembered me from a previous visit, so got a doctor ASAP. She knew the correct protocol for my conditions. This all happened in ambulance triage which sped things up. The doctor checked my previous file on the computer and saw the alerts for asthma and SAI. Doing this meant she could ask me personalised questions to decide on a plan. She came to speak to me straight away, rather than just looking at my chart and giving a vague plan via the nurses (which usually ends up more Chinese Whispers). She ordered blood tests before I had extra medication, because IV steroids change the results, and then immediately gave me 2 rounds of nebs and some more IV steroids.

I had treatment while waiting for admin tasks to happen. By admin, I mean tests being processed and sent to the lab, having a chest x Ray, waiting for the next person to pick up my chart. Usually, you have to wait while one action is completed before you can start the next bit of the process. And you aren’t necessarily told where you are in the system. But this time, I was started on nebs in the ambulance triage, had them while I was queuing for x ray and then finished them in a cubicle once I’d been moved to the main department after my x Ray.

By the time I saw the doctor again, they had a full set of results, new obs and we could revise the treatment plan. Normally, this would be the first time I’d have seen the doctor and while I might have had my emergency treatment, I wouldn’t have had any blood tests or x rays done by now. Just from having looked at my chart, the doctor wanted to admit me. But I said I felt a bit better. The doctor listened to my experience and used it to make a clinical decision. In other words, she said I could have a bed if I wanted it but if I wanted her to review me again in an hour, she was happy to do that too, because she recognised that I’d been in and out of hospital a lot and knew what I felt I needed. She acknowledged that I’m an ‘expert patient’. (That’s an actual thing, not just me being arrogant!)

She wasn’t 100% sure of a treatment plan based on my questions but she went to read my file and find out. This is rare! Medics hardly ever admit they don’t know what to do! And she did actually go away and read my file because she quoted some diagnostic tests I’d had done a while ago to rationalise her treatment plan. Because she’d done this, I was confident in her advice rather than having to do some pretty complicated steroid maths to check.

The doctor ordered some IV fluids and then said she’d review me in an hour but would start finding me a bed just in case. She actually did what she said she would- bed was available and she came back to review me. But we decided I was fit for discharge with prophylactic antibiotics and some really good advice about pred/hydrocortisone steroid dosing. I was impressed with the prophylactic antibiotics- she’d clearly read the highlights of my file because this was on my asthma plan from the brittle asthma clinic. Prophylactic means I wasn’t showing signs of an infection, but, in my case, it’s better to give me the antibiotics as a precaution rather than waiting to see if an infection develops.

My prescriptions (TTOs) were given to me speedily. Again, this doesn’t always happen. Quite often you have to chase someone down.

I go to a&e a lot and this almost never happens. Usually I have to argue with someone about my conditions, I have to chase meds because someone forgot, I get triaged wrong so get given the wrong treatment… The fact that everything worked *exactly* how it’s meant to means the NHS can work for complex patients like me, but, sadly, it doesn’t usually. In terms of hospital experiences, this was by far one of the best and least stressful times I’ve had. Do you know how nice it was to feel like I was being looked after, and not like I had to manage my own care?

Which asks the question- why doesn’t it work every other time? I didn’t do anything differently. The system just worked for a change.