Ahead of Rare Disease Day, Liz tells us of her experience of recently getting an achalasia diagnosis and of the invaluable support she has received from the achalasia community on Facebook.
Liz is a farm vet in Oxfordshire who recently developed achalasia, and has accessed support from others with the condition who are on the Achalasia Action Facebook Group and the ‘UK Achalasia’ Facebook group created by Jack Hyett.
Ahead of Rare Disease Day, Liz shares with us her experience of being diagnosed with achalasia and of receiving surgery to alleviate her symptoms. Of being part of achalasia support communities on Facebook whilst navigating her recent diagnosis, Liz says:
“I am active on the Achalasia Action Facebook group, where not only have I received lots of advice and tips, but I am also now able to offer comfort to those who are still waiting for their diagnosis to be confirmed, or to get a date for treatment, by telling them that there is light at the end of the tunnel.
Hearing other peoples’ stories on the group has also made me appreciate how incredibly lucky I have been with my quick diagnosis and successful treatment by a specialist in the condition who was quite literally on my doorstep.
One thing I have come to realise is that not only has my body been through a massive sudden physical trauma, but I have been on a mental and emotional journey too, and this will take time to process and heal. I appreciate how individual all our stories are, but I hope that sharing my story will have helped someone else.”
Please comment on and re-share Liz’s story to increase awareness of this rare condition and to unite for a rare swallowing condition. You can find out more information about getting an achalasia diagnosis, and about different forms of treatments on Achalasia Action’s website. If you need support on living with achalasia, contact us on info@achalasia-action.org or on 0300 772 7795. You can also join our Achalasia Action Facebook Group and follow us on Instagram and X (formerly Twitter).
Liz’s story
I have been a farm vet in Oxfordshire for the last 25 years, although the majority of my work now is actually as a named veterinary surgeon supporting the scientific research community.
I started developing problems with swallowing last Summer. Initially I self diagnosed, with help from Dr Google, as a hiatus hernia, although at the back of my mind I was convinced I had oesophageal cancer. I initially kept my concerns to myself. I am a problem solver and tried to fix things myself by changing my diet and eating habits. Smaller portions and softer food did help, and weight loss was recommended as the first step in reducing symptoms of a possible hernia, but unfortunately the issues with swallowing continued to get progressively worse.
It was October, after I had to physically bring up the food I had just eaten, that I finally plucked up the courage to make an appointment with my General Practitioner (GP). I was terrified, but relieved I was able to get an appointment with a registrar that same afternoon. He was amazing. He was reassuring, really listened and took my symptoms seriously, and I was immediately referred on the 2 week cancer pathway for a gastroscopy. I was given an appointment for the end of the following week, but over the next few days I deteriorated more and I was able to get a cancellation for an appointment for a scope at the end of the same week.
I felt like I had been given my life back when there was no cancer seen on the endoscopy, and I was referred back to my GP. I had never heard of achalasia, but this was mentioned as a possible diagnosis on the gastroscopy report. I am used to reading scientific papers with my job, so I did a lot of research into the condition, including finding the Achalasia Action website. My GP had never seen a case before either.
I was referred for a barium swallow but the appointment was for mid-December. Not only was I due to be going away to Australia then, but my symptoms were still progressing and I was finding it harder and harder to get food and even liquids to stay down. I frequently had to pull over from driving to regurgitate. I had a nasty productive cough, had bouts of cystitis and I was being woken multiple times in the night literally choking on my own saliva. The weight loss was dramatic, and I lost 12 kg in under 3 months. My GP was able to expedite the barium swallow by mid-November. This test confirmed the typical presentation of achalasia. It was then that I joined the Achalasia Action support group on Facebook.
Having lost more weight and gotten increasingly dehydrated, I attended a pre-booked GP appointment one Friday morning at the end of November, and my GP was so concerned that during the consultation he called the on-call surgical registrar at the hospital. They asked me to come in for urgent bloods in case I needed to go on Intravenous (IV) fluids. I now know that both my heart rate and blood pressure were really raised during this appointment. I was seen quickly at the hospital, had my bloods checked and an electrocardiogram (ECG).
More importantly, there happened to be a consultant on the ward who knew all about achalasia and he was able to not only refer me for a manometry test, but also get me placed on the waitlist for surgery. He talked me through all the possible options, and it was decided due to my age and the fact I was otherwise healthy, that a Heller Myotomy (HM) would be the preferred option. A manometry test in December confirmed I had Type 2 achalasia. I had a call a week later from the same consultant with a date for the HM surgery at the end of January. I was very pleased to get a date that still allowed me to travel on our planned trip to Australia over Christmas, but also to enjoy my 50th birthday, which was 4 days before the surgery date!
With the reassurance of this date I was able to adapt to this ‘new normal’ that my life had become, coping with the constant regurgitation of almost everything that went into my mouth. I seemed to have good days and bad days; some days I couldn’t even keep water down, and would be very fatigued and exhausted, whilst other days I felt relatively normal (as long as I didn’t eat anything). Luckily I seemed to totally lose my appetite, which was a blessing as those who know me know how much I love my food, so not eating much did not seem that much of a hardship.
Whilst we were away I enjoyed lots of ice cream and smoothies. If I did eat, I just had to make sure I knew where the nearest bathroom was, and I made sure I had a supply of aeroplane sick bags in the car for the long journeys. I got used to ‘clearing out’ whatever was sitting in my oesophagus before bedtime to avoid waking up choking on it (despite sleeping with my head raised on 4 pillows!). I was still counting the days until the surgery. I had lost 20kg in total over 5 months.
Working full time, the day of surgery seemed to come round so quickly, with little time to think about it. I was first on the list, and had four consultants in my surgery. I felt unbelievably well looked after and in very safe hands. and I was home in my own bed by 4pm. More importantly, the return to being able to swallow and keep liquids down was immediate and I was in little discomfort. The next day, and for a few days afterwards I did have some nasty bouts of heartburn. This was quite traumatic for me both physically and mentally, as I had heard about the issues with acid reflux which can happen post operation, which I had been dreading as during the course of the disease I had not suffered any heartburn. I was prescribed omeprazole and sent my husband out to buy bottles of Gaviscon, in case this was to be my new normal. Luckily the heartburn settled over the next few days and I am now four weeks post operation and off all medications. I was fully back to work after less than two weeks, and I am still feeling very blessed. Amazingly I am eating pretty much back to the old days, I feel great and so hydrated now! I cannot thank the NHS enough for everything they have done for me over the last few months.
I am active on the Achalasia Action Facebook group, where not only have I received lots of advice and tips, but I am also now able to offer comfort to those who are still waiting for their diagnosis to be confirmed, or to get a date for treatment, by telling them that there is light at the end of the tunnel. Hearing other peoples’ stories on the group has also made me appreciate how incredibly lucky I have been with my quick diagnosis and successful treatment by a specialist in the condition who was quite literally on my doorstep (one of the research units I cover is about 100 yards from the theatre where I had my surgery!).
Since Achalasia Action have started sharing other peoples’ stories, I have now also joined the UK Achalasia support group which is just as supportive and such a safe space to share your Achalasia experiences. One thing I have come to realise is that not only has my body been through a massive sudden physical trauma, but I have been on a mental and emotional journey too, and this will take time to process and heal. I wish everyone the best with their journeys, I appreciate how individual all our stories are, but I hope that sharing my story will have helped someone else.
