- Achalasia
- Interviews
Teresa's interview
How did all start?
It all began the day before I was moving to Australia, April 2000. I woke up the night before my flight with what I initially thought was heartburn (common mistake). Grabbed some cold water and that it was it - or so I thought. In Sydney, my first day in my new job....just after I'd had my lunch, which as I remember, was just a sandwich. I had this 'blocked' feeling my chest, my food was stuck. I panicked and ran to the bathroom, I vomitted prefusely for 10 mins. I knew something wasn't quite right.
Then the weight started dropping off - and fast! I was still vomitting after every meal. I went to the doctor, they fobbed me off with GORD (Gastro-oesophageal reflux disease). They gave me SOMAC to stop me vomitting, monitor how I went with that and go back in a week.
His diagnosis just didn't sit right with me....I knew something was wrong. For two years, I struggled to get any answers to why I was feeling like this. I was booked in for a Oesophageal Manometry - that in itself was probably THE lowest point for me. A procedure that usually takes 45mins, took nearly 2 and a half hours - one tube the nurse couldn't get in and down my throat, the second much smaller tube (used for small children) went in, but I'd had enough, I grabbed and pulled the tube nearly rupturing everything on the way up! I came out of there totally horrified and exhausted.
Gradually, my symptoms worsened to the point I could only eat mashed potato and gravy - through a straw! That went on for next 3 years. It got so bad I dropped 12kgs in 6 weeks, became totally withdrawn, weak, sullen faced and couldn't even swallow a mouthful of water - totally malnourished.
My then-husband took me to the doctor (he wouldn't let me drive myself), sitting in the doctors office, the doctor held his head in his hands, his answer? 'I really am at a loss - we've tried everything I think it could be and had you on every drug trial available'. He then picked up the phone and spoke to a consultant gastroenterologist at the local hospital and got me an appointment for the following day.
At this point, I was relieved that SOMEONE may be able to help me. I walked into his office feeling anxious, nauseous - the usual. He called me in, stated that based on my notes he'd been sent I would need to go have a 'barium'. Laying on the bed, trying soooo hard to hold the 'chalk' in my mouth - the nurse told me to swallow it. They turned the monitor towards me so I could see what was happening - they were horrified. I had approximately 3 days worth of food stuck and the 'barium' was sitting on top! It was trickling through the food and trying to get into my stomach.
They rushed the results back up to my Consultant - he called me. Asked me 3 very easy questions and said ' I know exactly what's wrong with you, you have probably one of the worst cases of achalasia I've ever seen in someone of your age (I was 34)' - I weigh just 44kgs. He then said 'if you had not come to see me today, you would've been dead in 8 weeks'. Yep, it was THAT close!
I was booked in for my first dilation, the following day. One year later, the second procedure - neither have been overly successful however I have a way better quality of life now than I did before.
Do you already have a diagnosis? How long did it take you to get it?
My diagnosis, along with endless drug trials and investigative procedures too a total of 5 years.
For what medical specialties have you been treated? What has been the most useful specialty for your?
2 dilations - 30mm and 35mm balloon.
What has been the most useful thing for you so far?
Experiencing a better quality of life!!
What have been your biggest difficulties?
Changing my lifestyle - adapting and introducing new, unprocessed, foods. Understanding and appreciating my 'triggers'.
How has your social and family environment reacted? Have your social or family relationships changed?
My family - especially my Mum being a nurse - have been amazing. They all do research and we keep each other updated if they discover new medical findings. My daughter has been a blessing, she knows and can when I'm not well or I'm about to have a spasm and know what to do to calm me down and stop me panicking.
My partner understands although it's a little daunting for him, he doesn't like seeing me being in pain or suffering.
What things have you stopped doing?
Smoking and limiting my alcohol intake - both serious triggers to a spasm
What do you think about the future?
I hope they find a cure for achalasia!
So far, which years have been the best years in your life? What have you done during them?
Every day since my diagnosis in 2005!!
What would you like to do if you didn’t have your condition?
I do everything I want to do now! Achalasia doesn't stop me doing anything....I won't let it.
If you had to describe your life in a sentence, what would it be?
Enlightening...with a very steep learning curve!
Finally, what advice would you give to a person in a similar situation?
If you're not happy with any diagnosis, get a second opinion. If you believe your symptoms are achalasia, then stand your ground and push for the exact diagnosis. Having said that, this disease is so much prevalent now so medical staff are familiar with the symptoms and can often jump out at them!
