My Chronically Class Life

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My First Blog Post

What the hell is going on?

“Your Illness does not define you. Your strength and courage does.”
— I have no idea but credit is due where credit is due

This is the first post on my new blog. As some of my close friends and family members know, I have EoE or Eosinophilic Esophagitis (and yes I actually can pronounce that). Over the coming weeks, months and years, I’ll be sharing my experience with the disease, how it affects me and the treatment I am undergoing.

For (most, if not all) of you who don’t know what EoE is, it is a chronic autoimmune disease which affects the oesophagus. Eosinophils are white blood cells which are present in my oesophagus when they shouldn’t be – what naughty boys! This then means that my throat attacks food as it travels down, which leads to choking. If you know me then you know this is no surprise as I have had several episodes of food becoming lodged in my throat in the past.

Now that I have a diagnosis, albeit a scary diagnosis, I’ll be documenting my journey with EoE as I trial medicines and diets whilst also sharing how it affected me in the past. EoE is a relatively new disease with cases only being recorded for the first time in the 1990s, so it may not come as a shock that there is not yet any cure. However, research is beginning to have some basis and there is some medication which works for some patients.

I begin medication in the next week which means I guess I’ll upload a review of what I think xx Just kidding, I guess that’s all I’ve got to say for now.

Over n out troops x

Pre-Op Positivity

2020.

2020 has been a true rollercoaster of a year. As we begin to approach a new year there is reason for optimism. We may have a vaccine sooner than I thought, a lot of us miss ‘normality’, but, we can’t deny that we enjoyed the birdsong in March.

We, as students, HATE online university, or do we? We can work to our own schedule, and the law school, are more understanding of the need to work remotely. I decided to stay home, for better or for worse, it has allowed me to continue working (with my FANTASTIC colleagues) and my studies have not suffered. Although, I do miss the library! Covid has been an awful time for some people/businessess/livelihoods, and, yet, I’ve seen more friends than ever have the confidence to take control of their own lives, set up businessess, follow passions, and apply for jobs. Me? I’m in the midst of exams, applications, and operations.

There is always hope when you look for it. I am NOT an optimistic person. I am most definitely a pessismist. However, one would really struggle to get through this year without some form of optimism, whether that be of restrictions ending, or a vaccine. Next Friday I’ll go for my pre-op, that I did not think I’d be getting this year! I’ll be tested for Covid and then sent into self isolation. This may actually be of use, seeing as I’ll be in the middle of my exams. Equally, this could induce (more) breakdowns! On a more positive note, I was voted the representation adviser of the year for my voluntary work. An achievement means more, when its your passion. You are not just being rewarded, you are being acknowledged. It is that acknowledgement that makes you do that little dance inside, and, gives you hope. Like I say, I’m no optimist but we can find happiness is the small stuff.

I’ll be back early Monday morning for an upper GI endoscopy, with biopsies and a possible dilatation. I’ll be back under general anaesthetic so there is less worry on my part. I’m weirdly excited to be back, it means that progress will be being made, which I can only take as a positive. So, bad year, but the world keeps spinning, things are happening, you just need to be brave to be a part of them. If there’s one thing I’ve learnt, don’t put it off. You already know what ‘it’ means to you. You’ll feel fine.

Well over a year

It’s been well over a year since I was first diagnosed. This blog feels as if it’s turning a bit doom and gloom, but then again, that’s 2020. Since my last post, about coronavirus and rare diseases, I have learnt a lot.

The only picture I took this time – a post-op me feeling very sorry for myself

I feared getting Covid and what that would mean for my EoE. This definitely distracted me from a much more present danger. My EoE. In June, I ended up back in Forth Valley Hospital’s A&E. I had a food bolus stuck in my oesophagus, near my voicebox. This time was a little different, I was struggling to breathe. So my mum and I headed to the hospital, but this time was different. There was a nurse at the door checking I didn’t have coronavirus symptoms. I was not allowed to bring anyone with me, I sat alone and waited to be seen. Which was, admittedly, quicker than normal. As soon as the doctor arrived I explained to her my condition and what needed to happen. She left to check my medical records and returned and agreed. However, it was 7 pm the gastroenterologist had gone home, I was to wait till the morning.

I was taken up to the day-surgery ward where I spent the night and then had surgery in the morning under general anaesthetic. I woke up groggy and more sore than usual. I was told there had been a small tear whilst performing the endoscope and subsequent dilation. This was disappointing as I had a dilation, not 9 weeks before this one, so, clearly, the scar tissue had just collapsed back in. Furthermore, my oxygen levels dipped whilst in theatre meaning they had to put me onto a ventilator temporarily. This was in addition to the endoscope in my already narrowed oesophagus, which I think contributed to the slight tear.

Initially, my biggest fear was that if it ever came to it, and I needed a ventilator it wouldn’t physically fit down my very narrow (5mm – equivalent to a drinking straw) throat. However, this operation showed me that it can be done which has taken away that fear, so I fear Covid a lot less, in a weird sense.

Whilst I felt physically better, I was definitely upset that the initial dilation had been reduced so quickly because now I have to look at other (scarier) alternatives.

So its been well over a year and it’s hard to say things have improved but for now, I’ve got my health (ish?) and a lot of other people and things to be extremely grateful for so c’est la vie I guess?

Covid-19 and Rare Diseases

It seems almost impossible to go a day or, indeed, an hour without mention of Covid-19. We’ve all had a lot more time to ponder what we consider what we value. I think most of us can unequivocally say that the health and safety of our nearest and dearest is a top priority. The response to the Coronavirus pandemic shows this, more than ever. We don’t miss material possessions, we miss our grandparents, friends and other family members. We also value the NHS now more than ever. To those out there, on the front line, as a student nurse or a pharmacist, thank you from me and mine to you and yours.

But what about those of us with rare and often complex diseases?

Where do stand in all of this?

These questions, in my eyes, are a two-pronged problem which require special attention and cannot be applied for everyone. People HAVE to be treated as individuals.

Those with serious conditions are shielded, this is common knowledge. However, what about those of us with complex diseases? EoE was discovered in 1978 meaning it is a relatively new, yet chronic, disease. As with all illnesses the effects of coronavirus on such a disease are unclear. As the pandemic began my biggest fear was to become a statistic, I did not want to be cast off as a tragic case of a young person claimed by the virus simply because they had ‘underlying health conditions.’

I, personally, have not received a shielded letter, so, I continue to work as a key worker. I know of people with EoE receiving such letters, however, this is not widespread. Often, people want reassurance, I fall into this category. I want my Gastro specialist to reassure me that my disease and the medication I take will not limit my ability to fight this unforgiving virus, if I was to catch it.

The other prong of this problem is that rare diseases do not simply stop because of a pandemic. In my personal experience, symptoms worsen with stress. Despite having a dilatation of my oesophagus in March, (post coming soon! 😉 ) I am still having obstructions of solid food and choking on liquids. In cases where I would phone NHS24 I have decided to try sleep it off. I DO NOT RECOMMEND THIS if you experience choking as it can cut off your air supply, however, I, am an idiot. This is down to a fear of the current situation in hospitals and not wanting to worsen the pressure on a service we currently all hold so dear. I have every faith in our healthcare system, I am not an urgent patient, I don’t urgently need the service.

On that note, I’d like to share a link to a piece of music that gets me through some of the grey days.

So, I will leave you with a phrase you’ve not heard before…

Stay Home and Stay Safe x

Back to Square 1

As 2019 comes to a close its generally a good time to take stock on what this year has meant. I brought in the New Year, last year, in A&E, choking. Following this, I got my Eosinophilic Esophagitis diagnosis in April. It has been an interesting 8 months since, comprising of…

2 Endoscopies
1 Nasal Endoscopy
5 shots of Muscle Relaxants
1 Tonsillectomy
2 Accident and Emergency visits for obstructions to my oesophagus
6 weeks of heavy anti-acid medications

I can’t even begin to count how many obstructions I’ve had over this year that I didn’t go to the hospital for. I, also, can’t count the number of tears and the frustration this disease has caused me this year. University is meant to be a time of personal growth, fun, and hard work. Undoubtedly, a chronic disease hinders this pivotal growth in hidden ways that many cannot see. You may see me on campus laughing and smiling (maybe… on a good day) or at work, like a normal 19-year-old. What you don’t see is the chronic fatigue leaving me bedridden for hours or days at a time. You don’t see me sitting with my head over a toilet for hours waiting for an obstruction to finally move. You don’t see the liquid diets I need to switch to from time to time, in order to simply maintain a healthy weight. You won’t see how much of a struggle meal times can actually be.

I finally visited my doctor today. I’m being put on heavy anti-acid medication again and going in for an endoscope under anaesthetic at some point in the New Year. During that endoscope they will perform a dilation of my oesophagus, if all goes well, a few days in the hospital recovering. If it doesn’t go well, meaning, a perforation, then the outcome won’t be so pleasant. However, the chance of that happening is very slim. So, in that sense, we are back at square 1, which is good and bad because at least something is happening.

I feel forgotten about and alone. I don’t know of anyone else experiencing anything similar, if you are, feel free to drop me a message, would love to chat to anyone! This has, without a doubt, been the hardest year of my life, and often one that I’ve dealt with in private, unless, your Christie O’Reilly and I cry into ur lap at every opportunity. I am so thankful for those around me even if you don’t all understand what’s wrong with me because to be quite honest neither do I. 2019 its been real and forgive me for saying I am glad to see the back of you.

Much to do about nothing

What can you do when you feel there’s nothing you can do?

Hope for the best?

Wait for something bad to happen?

Wait for nothing to happen?

The problem with EoE, in my experience, has alway been that it is reactive. By this, I mean that any treatment I’ve received has been in response to some form of food lodging for an extended period of time, usually over 24 hours. I’ve never received any preventative treatment until this summer when I received my diagnosis. I met my doctor who explained that he would be with me through this entire process and we are going to make a start at getting me healthy. I was given the highest dose of anti-acid medication my body could take and an inhaler, each, a six week supply. To find out if this medication worked I would need (another!) endoscope following a six week trial of the medicine. I was told was the medication duo doesn’t have a huge success rate as neither medication is used for what it is intended but it can be really effective for a lucky few. During the six weeks I noticed no difference so I’m unsure if I was to be included in that small bracket of the lucky few.

Unfortunately, the six weeks were up well over a month ago. I ran out of medicine and have heard nothing from the hospital or my doctor. I wouldn’t say I was looking forward to that endoscope, not at all, (anyone who has had one will understand why) but I really was hopeful that this was the beginning of the end. Well, as much as is possible with a chronic disease. I thought by the end of this year I would be coming away with a treatment plan to maintain and control something I have perceived to be a burden on my health and social life for the past 5/10 years.

So,

Where now?

I will have to try get in touch with the hospital and somehow meet my doctor again and, most likely, start over. However, the anti-acid medication is extremely nauseating leaving me unable to eat at regular mealtimes. I began to run into a horrible cycle of taking my medicine at the advised times then waiting hours before eating. This led to weight loss and a bout of fainting. But, I would absolutely choose this over the uncertainty of not know when my next holiday to A&E for a long weekend would be.

Where am I now?

I’m off my medication currently as my GP appointment wait is 4/5 weeks. With exams fast approaching I’ve learnt that stress seems to trigger episodes whereby every meal seems to be a battle. Each is painful and often slow. I feel embarrassed to eat around others as I don’t know whether I’ll need to sit for 10 minutes waiting to the food to eventually pass down or take a trip to hospital to eventually have it forced down.

This is an ever-present fear of mine, when will the next obstruction occur?

What if they can’t push it down?

Each is a scary thought. The first being inevitable in my current state of affairs. However, I can only hope it is far off in the distance as opposed to being tomorrow. So for now, it seems to be sit tight and wait…

Fibrosis (and what it actually means)

Fibrosis – Scar tissue which affects how an organ functions.

Scary sounding? – maybe so, but let’s take a closer look.

For me, I have fibrosis in (at least) the upper portion of my oesophagus. Unfortunately, I don’t yet know the extent of the fibrosis just that it is there. The reason this has happened is that they cannot get the endoscope past the first portion of fibrosis. It can also be described as a stricture or a hardened narrowing of the oesophagus. In my case, the stricture is located 2cm from my voice box and just 18cm from my mouth.

So?

Fibrosis of the oesophagus cannot be treated with medicine, it has to be treated by a medical procedure called a dilation. This involves putting an endoscope down my throat and stretching my oesophagus from the inside, out. There are a few issues with this procedure which I’ll get to. However, I firstly want to say that treatment for EoE is aimed at preventing strictures and inflammation of the oesophagus. Now, due to lack of diagnosis and treatment, I have rather unluckily, also got fibrosis. It is also worth mentioning that EoE and fibrosis and completely separate issues.

Apologies for that detour, back to the dilation. The first issue with the dilation is that, even if I take my medicine perfectly, there is no guarantee that my stretched oesophagus will remain that way. It could just narrow again and I will need my throat dilated for a long time. But, it might not.

The second issues lies with a fact previously mentioned. The first stricture is 2cm away from my voice box. There is no space for error. There is a (very) small possibility that my throat may be perforated, meaning I would never talk or eat again. It would be completely wrong of me to dwell on this as it is extremely (!!) unlikely to happen. It is a risk… one that I may need to repeatedly take. I can’t change this and (this time) I do trust my doctor.

I’m getting an endoscope (and probable dilation) in around 4 weeks. I’m not nervous, mostly because I know I’ll be under general anaesthetic but fingers crossed all will go well. I’m hopeful anyway 🙂

The Tribulations of Misdiagnosis

Often, we put our trust into those we deem to have more knowledge than ourselves; parents, teachers, or doctors.

I was 15 when I had s second food bolus lodged in the upper portion of my oesophagus. I spent over 12 hours in A&E unable to eat, drink or swallow my saliva. Instead, I spat into a sick bowl for these long and painful hours while doctors decided if I was a problem for ENT (Ear, Nose and Throat) or Gastro.

The following morning, I had my first endoscope to dislodge the chicken I had choked on over 12 hours. I didn’t understand what was going on, I was so tired, confused and scared. During that endoscope in 2017, the doctor took biopsies to check for the presence of eosinophils. I didn’t know this until 2019, I was never told by any medical professional. After the bolus was pushed down I returned home shaken up and unable to eat solid food. I flew to Mexico the following day to volunteer for 3 weeks. While packing, I made sure to pack powdered liquid meals. Unfortunately, there were days when I couldn’t manage solid food and had to rely on these.

Upon my arrival back home, I returned to the same hospital I was in just 3 weeks ago. Now, before I explain this story any further, I want it to be known that I do still struggle with this part as it hurts me to share. Deep down, I know that I am still bitter towards the situation and the doctor.

My mum and I were led into a small consultation room, where I felt belittled from the outset. The doctor intimidated me despite being small in stature, he sat, clutching papers which had my biopsy results. Results which confirmed I did have EoE. This doctor disregarded my diagnosis and informed me I had acid reflux which explained my irritated throat.

His advice – 8 gaviscon tablets a day (no prescription by the way!)

For me, I knew this was not the issue. I knew it wasn’t simply acid reflux. I told my mum and she said to listen to the doctor ‘he knows what he’s talking about.’

Its difficult to forgive, given my position now, which will be explained in my next blog post 😉 . I do want to forgive and forget but moving is challenging when this doctors decision has had such a large impact on my life. However, that’s something I need to work on, myself. At the end of the day it is only me who is living with this condition so why should I be bitter towards a doctor who chose not to present facts and treat accordingly.

Where it all began…

A rather dramatic title for a rather uneventful story, if I’m honest.

Growing up, I’ve always been a tall, skinny, and somewhat sporty girl. ‘My’ particular sport happened to be cheerleading; we trained every Tuesday beginning at 5:15 pm. One evening, I was running late, so decided to wolf down my dinner. My mum had cooked roast beef which was quite dry (sorry mum!). This combination proved not to be ideal as I soon began choking. The food would not budge and was lodged just below my voicebox.

My mum reassured me not to worry, that this used to happen to her alllll the time, and that if I relaxed it would eventually go down. It didn’t. I was more concerned with getting to cheer on time but it soon became clear I wouldn’t be making it to training this night. After a call to NHS24, a paramedic was sent, who soon called for an ambulance. I started to panic at this point because I couldn’t even swallow my saliva and was still choking.

Once we arrived at A&E we waited several hours only to be sat in a bay with an alcoholic. However, he was very kind and kept asking if I was alright. Once I was seen by a doctor, I was asked if this was common, I said no. He then told me I’d get an injection of muscle relaxant, in an attempt to allow the food to go down. However, me not wanting to waste NHS resources ‘decided’ (I wish) to vomit it up as the doctor brought out the needle. Just a note, I don’t have a fear of needles with the amount I’ve had to deal with in the past.

This was my first major experience of Dysphagia resulting in food becoming blocked. At this point, I was just sent on my way with no further follow-ups. In my head, I considered it a freak accident that would probably never happen again. Might’ve gotten that one wrong…

Hi Everyone, a lil bit about me…

I am an 18 year old girl from Dunblane in Scotland, I also study Law at the University of Aberdeen. I begin 2nd year in September and I’ve also just begun to treat a chronic autoimmune disease called Eosinophilic Esophagitis (EoE) ((mouthful I know)). More importantly, I also have a sausage dog called Max.

I guess I’m just here to chat rubbish and reminisce about every time I’ve ended up in Forth Valley A&E. Whether that be choking on food or antibiotics, I’m really not fussy.

Why do this?

I want to shed some light on EoE which is not commonly known at all and share my personal story with it.
I’d love for everyone to be understanding of the disease and how it affects individuals as it does happen to be an ‘invisible disease’

I have swayed on beginning a blog since I got the diagnosis but I decided in the shower (where the best ideas come to you) to do it as a place for myself to offload. But also to share (hopefully) useful information with others struggling with EoE or family members of loved ones with EoE. Even doctors still are debating how to treat this disease, so I am in no way trying to advise others how to treat EoE. I just want to share my experience with the disease so far!

Over n out troops x