1) Introduce yourself
I’m Kieran, I’m 28 and I’m from Newcastle upon Tyne, in the North of England. I’m a big nerd who likes superheroes, comic books, video games movies and binge watching suspense/psychological/action TV shows.
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
I’m a reclusive degenerate riddled with depression, severe upper right thoracic nerve damage and lacking greatly in oesophagus.
I was also diagnosed with epilepsy, at the time thinking that it was non-photosensitive. However, after doing a lot of my own research I think I could have been misdiagnosed but won’t be able to define this until I speak to my consultants again.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time? Etc
In my early days, I was diagnosed with Barrett’s Oesophagus*. I was only around 3/4 so I don’t remember a lot but once it was finally established, doctors were pretty decent with it. I always dealt with the higher ups of the department and to this day I still consult with the “big dog” of the North East gastro-intestinal unit.
Depression was a little different It stemmed from my Barrett’s (and it’s evolved cancer); Understandably, I was low after spending four and a half months in hospital when the initial time given was two weeks so people just shrugged it off to that but it wasn’t until I wasn’t recovering properly that people started to think it was depression – Once it was diagnosed, it still took some time to get the wheels turning.
4) Had you heard of your illness/condition/disability before you were diagnosed?
I had NEVER heard of Barrett’s before [but I was only a child at the time]; I wasn’t very clued into medicine at the time.
I think everybody knows OF depression, even though they don’t know the ins and outs.
5) How did you feel when you were told your diagnosis?
As I was so young, I don’t remember having any particular feeling towards the diagnosis to Barrett’s. I just got on with it as a resilient kiddo.
When it evolved into its cancerous state, that was a little different. Being told what was needed before it ‘was too late’ shellshocked me. I don’t think I took it all in to be honest.
6) What treatment did you have? Were there any problems? Did it help?
Barrett’s treatment is a long-term, ongoing treatment. It consisted of multiple surgeries and procedures called Funduplications≠. I also needed my oesophagus ‘stretched’ every now and then because it would close up.
The Oesophagectomy had the most complications – a four hour surgery ended up becoming eleven and a half hours. My body didn’t recover as expected and I required a Thoracotomyº because I contracted pneumonia during my stay in Critical Care.
For the surgery to happen I needed to have my chest and abdomen cut open and to get into my chest, my ribs needed to be broken under my right arm. This displaced and exposed a nerve which would have caused more damage to put back into place than leave.
7) Did family/friends/colleagues take it seriously? Did they support you?
Certain colleagues took my Barrett’s trauma seriously, worrying for my health etc but my employers did not. During my time in hospital (in the ICU nontheless), one supervisor kept leaving me aggravated voicemail messages and when my mam eventually answered, he told her I was being summoned to a disciplinary hearing for unadvised absence despite being told beforehand that I’d be going into hospital for a big procedure.
Family and friends were great with it, they were very understanding and helpful with the majority of things they could control – visiting me whenever they could.
8) How does your illness/condition/disability affect your life?
The extensive damage to my body due to the amount of surgery I’ve had is the biggest setback I have. It’s impossible to do strenuous physical activities and I get fatigued quickly.
The nerve damage to my right hand side means I can’t carry heavy weight in that arm.
Pain is a constant in my chest and abdomen. Old breaks and fractures in ribs still hurt. I also get very stiff and tight muscles due to the way they’ve healed.
I suffer from severe acid reflux and vicious bouts of nausea.
9) What is something you wish people knew about it?
I’d like people to know that I’m not drunk if I have to throw up in the street or sit down because I’m feeling nauseous and tired.
10) Anything else you’d like to share about it or your experience?
I’d like to emphasise that if you have severe, constant and prolonged heart-burn/indigestion then go see your doctor. It’s very important to get this checked out, no matter how old you are!
≠ https://www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/fundoplication
º https://www.healthline.com/health/thoracotomy#thoracotomy-vsthoracostomy
