Day 229: The basement of Leeds General Infirmary

So how did I spend my Valentine's Day? Sat alone in the basement of Leeds General Infirmary with some patient case notes about kids with arthritis and a box of mini muffins for company, that's how. Could be worse though, at least I didn't get a Valentine's Day card from my dog like my friend Thom. 

I should probably explain what I was doing in the basement of Leeds General Infirmary... This is where the paediatric rheumatologists live. All 4th year medical students have to undertake a research project. Most people choose from a list of potential projects, but a few crazy people do what is known as a 'self design' - essentially you design your own project, find your own supervisor, and carry out the research by yourself. I am one of those crazy people. I am carrying out an audit of all children with any form of Juvenile Idiopathic Arthritis (JIA) under the care of the paediatric rheumatology team in Leeds, looking at the time interval between onset of symptoms and diagnosis of the disease. Studies have shown that if a person is diagnosed within 12 weeks of their first symptoms they are more likely to respond to treatment and go into remission, thereby limiting joint damage. I've wanted to look into this for a while now, not only to show that this rarely happens but also to look into reasons why it rarely happens. 

My supervisor warned me back in September that I would find this hard; I just didn't realize quite how hard it would be. Being told that there are around 300 patients with some form of arthritis being treated in Leeds is one thing; seeing the names of every single one of them written down in one folder is another. Unsurprisingly I've found that very few of these children were diagnosed within 12 weeks. In fact, some had had to suffer for up to seven years before their symptoms were finally recognized as JIA. This is unbelievably frustrating to read. It took six months for me to be diagnosed and to start treatment, and I wouldn't wish the pain and suffering that my family and I went through on my worst enemy. To know all these children are going through the same thing too is heartbreaking. 

Several times today I found myself drowning my RA sorrows in my box of mini muffins and wondering why the hell I had voluntarily put myself in this position. But every time I quickly reminded myself that this research could potentially help others in my position avoid the same fate as me and so many other young sufferers of the disease. 

With enough awareness one day we WILL live in a world where there is no late detection of inflammatory arthritis. 

Day 216: Just one of those things

Even I am getting a bit fed up of hospitals now. Over the last few weeks I’ve been gradually making my way around every hospital in Leeds. I’m an actual hospital whore. Two days after my joint juice infusion I found myself in the A&E department of Leeds General Infirmary. On a hospital trolley. On all fours. AGAIN. By this point I had had enough of the pain in my stomach and had had next to no sleep the night before (as did the poor boyfriend who stayed up until 4AM keeping me company until I fell asleep).  Plus, having to look on helplessly whilst my friends ate their pizzas in Pizza Express whilst I struggled with my plate of dough balls quite frankly tipped me over the edge.

I’ll be honest, I can think of better ways to be spending my Friday night than in A&E.

I was admitted and transferred to the gastro unit at St James’ Hospital, which meant I got to ride in the back of an ambulance. This might have been fun had I not felt like vomiting so much. In fact I only just made it to the ward before I vommed my stomach contents up into a cardboard bowl. And by stomach contents I obviously mean about a ml of water.

I was convinced it was gastritis. The doctors were convinced it was gastritis. All that was needed to confirm the diagnosis was an endoscopy. As I’ve mentioned before I’ve had two of these in the past, and I swore after the last time that I would never have one done again. I would genuinely rather have a camera up my bum than ever have to have one down my throat again. Unfortunately no one has bothered to invent a kinder way of looking at the lining of one’s stomach so I had very little choice. At least I’d have a diagnosis at the end of the ordeal though, right? Wrong. There was nothing wrong with my stomach lining. On hearing this news I burst into tears. The staff all looked at me like I was an absolute nutter; “you do realise that’s a GOOD thing, right?” Well no, actually, because the thing that everyone thought was causing me so much pain is in actual fact not, and now I have no freaking idea what’s wrong with me. And what’s worse, the DOCTORS have no freaking idea what’s wrong with me. Anyway, to cut a really long story short, six days, one x-ray, one endoscopy, one ultrasound scan, countless blood tests and several syringes of liquid morphine later I was diagnosed with... “just one of those things.” I bet House could have diagnosed me. 

But on the plus side I got to go home and not so much as look at another hospital for a whole five days... until today. Yep, as I write this I’m back on ward 8 at Chapel Allerton Hospital again, because today is my second and final infusion of this joint juice cycle. And my appetite is slowly coming back, too. I even said yes to a biscuit with my cup of tea today. I’ll be having those three sides with my Nando’s burger again in no time.