LEIA’S PERSONAL STORY

I am one of only 1/100,000 people to get to have achalasia (0.001% of the population).  Thinking back, my story really started in my 20’s.  At the age of 23 when I was pregnant, I remember having an “air bubble” lodged in my upper stomach/lower esophagus.  I would beat my back against wall trying to get it up.  This was just a tiny nuissance and didn’t really bother me much.  Flash forward 16 years and I started having severe pain.  I went to the doctor and was diagnosed with reflux and given Prevacid.  Well, come to find out Prevacid and most other OTC refulx meds have a sulfoxyl group and I am allergic.  Therefore I could not take any of that.  Since it wasn’t that bad and was infrequent, I just worked around it.

The pain started getting worse and I would go to the ER for a GI cocktail – I worked at the hospital and could be seen as an outpatient, be given the meds and go back to work or home.  Again, this was infrequent and I could manage it.

Last year, at the age of 44, I moved to another city and decided to try again to get more answers.  I saw a gastro doc and explained everything.  He did and endoscopy and stretched my esophagus, which helped.  Biopsies were normal.  After going back again with the same pain and graphic descriptions of the pain, he sent me for the most awful test in the world, a manometry.  It revealed I have achalasie level II or something of the sort.  My records say that this is most treatable.  I chose to have Botox and I was able to make it work for about 10 months.

I saw a surgeon and she prescribed Procardia – it actually helps.  I have esophageal spasms, too.  In the middle of the night, my food or water will make a second appearance and I wake up coughing and choking.  I have had enough of that and have decided to have the Heller myotomy.  At this point, most days I am unable to swallow even water and I can regurgitate anything very easily as most of the time it is still stuck in the esophagus.

Upper GI next week and a meeting with a surgeon later this moth.  Hope to get relief soon.

 

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