I’m not sure what this will become, but I am hoping that laying things down in writing will help me deal with the problems I’ve been having recently.
I guess I should start at the beginning. For me, I see the beginning not as my diagnosis but the appearance of my symptoms. It was about 3 years ago I started getting respiratory problems. Unfortunately for me, I was on holiday. I couldn’t sleep simply because I couldn’t lie down but for some insane reason I didn’t think anything of it at the time. I remember my family went out to the beach, couldn’t face it as I was too ill. While they were gone I had what was no doubt an asthma attack, just remember sitting on the bed, so out of breath and sweating all over, knowing that I could never make it the ten feet or so to the phone. There, I sat, waited and cried. It had started to subside slightly when my parents returned and after calling out a doctor, I received a steroid shot and bam, good as new.
On returning to the UK, I was diagnosed with asthma, given an inhaler or two and sent on my way.
A year later, whilst walking home after one of my GCSE exams, it happened again. I felt out of breath but it didn’t seem serious. It was about an hour or two later, when my symptoms hadn’t subsided, I went to the out of hours GP. Usual tests and then I was stuck on a nebuliser. Then it really went to hell. I stopped breathing before it could really do anything, I was on a bed in A&E when I finally became aware of my surroundings again. I had an english exam the next day, and I remember clearly my mother obsessing about me being able to attend it, remember being told I’d be out in an hour, then tonight, then tomorrow, then who the hell knows as I slowly declined. My hands shook with the amount of sabutamol I had inhaled and my heart raced. The ache in my ribs was torturous.
Then to HDU. Cannulas. Tests. Pain. I spent the first night bolt up right staring at a wall. I always remember that. I don’t think I moved more than my head for about 24 hours. Just thinking in… and out… I don’t think I really became truly aware of everything until I had use the toilet. Well, commode. The sheer agony of just standing to use it. I broke down soon after when I realised I couldn’t even wipe myself because of my cannulas.
A week later I was discharged with a short course of steroids, a new inhaler and a continuing diagnosis of asthma.
In the two years that followed, whilst I was never hospitalised, new and unusual symptoms began to appear. I had terrible urticaria, which slowly changed in its appearance over the two years. My legs would swell and become infected regularly. Blister and burn. I couldn’t walk. Sleeping with wet towels was my only relief, if you could call it sleep. Muscle ache so bad I couldn’t sit up. I used to wake up feeling almost like I’d run a marathon. Four hour baths and crying when I couldn’t get out again. My joints would ache too and then I became suspicious of a cold that had gone on far too long. Polyps. Then psoriasis on my hands. Stomach pain, random irregular vomiting. It would come out of the blue maybe twice a month. Then diarrhea, constipation. More swelling, infections, antibiotics.
This was all during the two years of my A-levels. I only 80% attendance, went to the GP about once a fortnight. Saw 4 different consultants. Paid a private one. Nothing. Just a damned abnormal FBC no one could explain and vague symptoms that could be anything.
Then on the day of my last exam, biology AEA, I woke feeling what can only be described as “off”. I went to my exam. Then to a GP appointment for the results of a coeliac test. One more stab in the dark. Negative.
It was on the walk home from this appointment that the agony started. The ache in my legs was indescribable. It wasn’t first time, but it was certainly the worst. It was only a mile or so, but I knew from previous experience that if I paused at all then muscles would stiffen and I would be left unable to even stand, let alone walk. When I got through the door, I fell over and cried. Unable to stand, I dragged myself to the freezer and stuck my legs against the inside of the door. After three hours, it subsided enough for me to walk. I was supposed to go to a friends 18th that evening and after 4 weeks of exams, I had been looking forward to it. Determined, I got ready anyway. I’d sit the whole night if I had to.
On the way I became feverish in minutes. Stop the car. Vomit on the side walk.
For the next week, I was very nauseous but still eating. I would occasionally be sick and my legs regularly ceased to function. Doctors said it was probably just a virus. I went away with my friends for the weekend, and whilst I couldn’t walk for most of it, I still had fun. On the last day bruises appeared all over my legs, a strange purple rash I’d never had before. On returning, another GP trip. Another diagnosis, Henoch-Schönlein purpura. It would resolve itself in a month or so.
Nausea, diarrhoea, vomiting. Getting worse and worse. I went to a job interview at the hospital and passed out. Dehydrated, the unhelpful and clearly too busy doctor told me. Drink more. Helpful advice for someone who hadn’t eaten in over a week and was sick on average every hour. The only way to prevent it was to not put anything in my stomach. I hadn’t drunk anything that morning so I wouldnt be sick in the interview.
The week that followed all I did was throw up and sleep. Sleeping at least 20 hours a day. I had another consultant appointment. Too ill. My GP no longer suspected HPP and decided I needed more medical attention. A few anti emetic shots later, I went to the appointment. I was sick in the car.
The female doctor did the usual physical examination and then simply said she was admitting me. I needed fluids, drugs and a proper diagnosis. I was there for three weeks when I was finally diagnosed. I had X-rays, endoscope tests, skin biopsies, blood tests. Some more blood tests. I had to be cannulated for my antiemetics as I couldn’t tolerate it orally. To say my veins are bad would be an understatement. By the last week, they had been so abused, my cannula would block pretty much hourly. Each recanulation took at least three attempts. In one day I was cannulated 21 times. So what had caused all my problems?
Churg Strauss.
My repeated eosinophilia was finally explained. The gastrointestinal problems were from these cells attacking my GI tract. My rash from them attacking my skin. The asthma and polyps from attacking my nose and lungs. In this rare condition, eosinophils, one of the white blood cells, attacks your own tissue. Autoimmune.
The treatment? Simple, steroids. You should be fine. Unless it comes back, you don’t respond or it randomly gets worse and your heart fails. Cardiomyopathy. Without treatment, the 5 year survival rate can be as low as 25%. Yay. I just love to see the positive side.
But that, haha, was only the beginning.
Patient Reflections 