My Journey with Achalasia – Just the beginning……

It was one evening in 2016. I was on the sofa and got cramp in my chest from where I was sitting awkwardly. I got up to stretch and walked to the kitchen…. but soon realised this was not cramp. The pain increased; it was like someone gripping my insides and squeezing.

Unable to tolerate the pain, I laid down on the kitchen floor and instinctively felt like I needed to stretch out my whole body. My daughter, who was only 8 at the time, was upstairs in her bed when I began calling for her. I thought I was having a heart attack. Not knowing what to do, she called my then boyfriend who was away on business and he said if it was that bad, I should call an ambulance. Something told me it wasn’t a heart attack – I was convinced it was muscular. I crawled to the kitchen drawer, took 2 ibuprofen and laid back on the floor. I took deep breaths, and tried to relax. After some time the pain subsided, due to the ibuprofen so I assumed, and eventually I felt absolutely fine. No pain, no soreness but exhaustion. I thought nothing of it until the next day. I made a sandwich for lunch and my first mouthful seemed to ‘stick’ halfway down. I thought I’d eaten too quickly or taken to big of a bite, so I coughed it up and carried on.

Little did I know that this 24hrs in time was the beginning of my Achalasia. It came out of nowhere, without reason. I hadn’t been ill, I was physically fit and was just about to graduate from Falmouth University with a BA(Hons) Music Degree……..

From this point on, things gradually worsened. Initially I kept everything to myself, but it got to a point where I had to tell my family. We didn’t foresee it being anything serious and were reassured when I was referred by my GP to an Ear Nose and Throat consultant.  27thNovember 2016 was the day of my first endoscopy but that proved inconclusive. In January 2017 I was referred for a swallow test, which again proved inconclusive.   Many appointments followed with countless ENT consultants – I was given medication, told to sleep upright, to not eat after 8pm, to not to drink caffeine….the list was endless.  But what annoyed me most was that NOBODY would listen to me? Each time I saw a consultant or doctor, I told them how I struggled to swallow solids AND liquids and that most things were regurgitated; that I had incredibly painful spasms in my chest, horrendous acid reflux…but they didn’t listen and each consultant said different to another. After numerous cameras into my nose and throat, a consultant decided to perform a dilatation (stretching) of the throat. In early 2018 I went in for day surgery at Derriford Hospital, Plymouth. My ENT consultant was very confident that the procedure would solve everything and several hours later I was on my way home. 

For a few days, things had vastly improved and I was relieved. But on day 7 (quite literally) at dinner….it happened – food got stuck. And that was that!  I went back to my consultant and they genuinely had no idea what the problem was. I sent lengthy emails, almost pleading for help as by this time, not only was my quality of life becoming poor but also increasingly the medical staff were becoming less interested, as though I was a colossal nuisance.  August 2018 saw my first unplanned admission into hospital. I’d had food stuck in my throat for a couple of days and I was unable to swallow anything. Having become dehydrated, I was admitted, upon request from my GP,to an assessment ward and it wasn’t the best experience. Without any disrespect to the staff, they couldn’t understand why I couldn’t eat or drink. Water and food were offered to me but I had to refuse. I was placed on fluids and I’m not ashamed to admit that I was scared – nobody knew what was wrong with me. The next day, later in the afternoon, I was transferred to a gastroenterology ward and was amongst patients who were very poorly; either with eating disorders or other illnesses. Feeding tubes surrounded me and this filled me with dread. After a 2ndnight in hospital and still nobody understanding what was wrong with me, I had a visit from a Doctor. My case had been assigned to him, in the gastro team. 

By pure coincidence, my notes had landed on his desk days before my admission – ENT had passed me to him, as they didn’t know how to proceed with my case. He was a nice man and after we’d laughed about the coincidence and good fortune, he quite calmly said ‘you are a very unique case… have Achalasia’! The relief washed over me like a wave – for months, under my own investigations, I had thought that Achalasia was my problem and he had confirmed it in one breath! To say a weight had been lifted was an understatement!

I was referred to the Upper Gastro-Intestinal team and after more tests, I was offered surgery, and a solution. The plan was to carry out a ‘Hellers Mytomy and Partial Wrap’. In simple terms, surgeons would cut the sphincter at the base of my oesophagus to stop it from contracting and as this would allow acid to flow freely from my stomach, they wrapped a part of it, creating a sort of knot. One more unscheduled stay in hospital in October 2018 for dehydration saw my planned surgery brought forward and on 21stNovember in I went.  I wasn’t nervous, I was actually excited! I knew the surgery and recovery wouldn’t be easy but the thought of being able to eat Christmas dinner kept me going.

The rest, as they say – is history! (To continue the rest of my journey, have a nosey through my blog) 

So, how am I now, nearly 2 years on? I’m better! There has been a slight deterioration over the past couple of months but it’s suspected that this is due to severe reflux so my medication has been increased and further tests are being conducted. Will I ever be free of Achalasia? No! It is with me for life and it could change at any time. My next mouthful of food or drink of water could be my last…….but nobody can predict what might happen in the future. 

Don’t ever take eating or drinking for granted……….ever.

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