The moment things changed....
This is a weird photo for me to look back on, mainly because I vividly recall being in pain.
I felt uncomfortable, under my rib cage felt tight, I was short of breath, and I felt bloated. “No big deal” I thought. “It’s just indigestion (which I’ve never ever had before) from that huge burger and mug of beer bigger than my face that I had before we set out walking” I thought.
Little did I know that this “indigestion” would carry on for weeks and get worse. The tightness around my ribs and lungs got so bad I couldn’t eat much, it hurt when I took a big breath or yawned, and I’d get out of breath really easy whilst walking. The swelling in my abdomen got so bad I looked 4 or 5 months pregnant, my belly button closed up, and I had to be helped up from the sofa. I was barely eating. I’d get acidic “sicky burps” as I call them when I ate, and felt nauseous a lot of the time.
I think it took me a few weeks after getting back from Austria before I went to see a doctor. I’m one of those stubborn people who think everything will just get better. The doctor said she was thiiiiiiiiis close to admitting me to hospital that day. Something wasn’t right. Instead, I waited three weeks for an ultrasound and tried to carry on as normal.
Fast forward three weeks and I make my way to the ultrasound appointment. After the scan and a second opinion from another two or three doctors, I was admitted to hospital immediately and stayed there for 3 weeks. I was so mentally unprepared for that to happen! I was scared....
Then came all the scans and blood tests and needles! I had a huge syringe needle put into my abdomen to try and get some of the excess fluid (cause of the bloating) from in there to be tested. That was not fun in the slightest, and it was unsuccessful...TWICE! They couldn’t get anything out.
I was eventually diagnosed with a rare liver condition called Budd Chiari Syndrome. It affects 1 in a million people (I actually am, one in a million! Just not in a good way, haha)
Currently, I’m at home awaiting a second venogram procedure. The first one of those didn’t go well at all and the specialists were unable to get where they needed to see. They described me as “anatomically difficult”, delightful! I’ve had a camera down my throat as well. It’s all been going on. At home I take water tablets to stop any excess fluid building up again, and have blood thinning medication injected into my stomach every day. I see a liver specialist once every two months.
Aaaaaaaand I think that’s pretty much where we’re up to right now. If you saw me in the street, you’d never know anything was wrong with me. It’s been mentally and physically draining but I’ve learnt a good few lessons.
If you read this far, I’m impressed! Feel free to ask any questions you might have. I’ll be happy to answer them if I can.
I’m hoping that if anyone gets diagnosed with Budd Chiari Syndrome and looks on the internet for other people who have it, that they find this post and it comforts or reassures them in some way. It’s such a rare condition that I struggled to find anyone on the internet with a story of their own experience. So yeh. Hit me up my fellow liver condition pals! I’m here for ya!
