She went into my right arm first. The deaf old man on the other side of the room was telling a joke loudly and she used that moment of distraction to pierce the vein. The blood came, but it was a bit slow. After a while she asked me to squeeze a ball. Each time I squeezed I could feel my upper arm throbbing against the tourniquet in cartoonish exaggeration. Sickening. The colour contrast turned down just a touch on my vision, and my eyes felt prickly, like I needed to cry. When I spoke, my tongue felt spongy and slow. She lay me down, but the blood stopped flowing altogether. The needle had fallen out. I felt better though, head down. Better enough to go on at least. We only had drawn 150 ml from the right arm and they wanted at least 400. So she went into the left arm. The flow wasn’t great, but it kept going with some tweaking, and we got another 300 out in about 20 minutes.
I wasn’t expecting to be bled yesterday. I’m not quite sure exactly what I was expecting, but it wasn’t as simple as what actually happened. On New Year’s Eve the only post that came through the door for me was a hospital letter, calling me back to see my Haemochromatosis consultant on January 28th. I wasn’t expecting to see him so soon. Both Will and I had somehow understood from my appointment in October that I wouldn’t need to see the consultant before starting treatment unless things were more complicated than anticipated. I suppose this just shows how even having another person with you in appointments doesn’t mean you don’t get things confused. What I had been expecting in the meantime was the results of my gene test, which would either positively confirm or muddle my diagnosis. I had the bloods done on October 15th when I first saw the consultant, but got a letter a month later saying I had to have them redone due to ‘an insufficiency at the lab’. I went back in in mid-November, and was expecting the results before Christmas. But no. Only this new appointment. January went by without further word. What had happened with my gene test? Had it gone astray? Was there nothing at all to report?
So I spent the first weeks of this year worrying about the appointment; trying to second guess what it meant; trying to stop trying to second guess what it meant. When I got to outpatients yesterday I tried to check in using the machine, but the machine said I wasn’t registered. My clinic had been moved upstairs to the Dermatology unit. The waiting area in Dermatology was full, and the board showed we weren’t the only ones who had been shifted up there. There were Dermatology clinics running as they should be, but also Cardiology and Gastroenterology. My consultant (O Captain My Captain) was running over an hour late on appointments, and by the time I was called in, I’d got so sleepy I had almost stopped worrying. To all our relief he had my gene tests (“I was worried I’d have to ring through to Leeds for them”). As my blood results suggested, I am homozygous for the C282y mutation, meaning I have the altered gene on both of my chromosomes. This is the gene combination most likely to cause iron overload. I must have inherited the mutated gene from both parents (A level genetics diagrams flashed before my eyes as I sat there thinking this through) which means they must both have at least one mutated copy themselves.
Before I came in, O Captain had been telling his assistant (whose name I embarrassingly can’t remember) that I also had EDS. He asked if I could show her the stretch on my skin, which he had asked to see last time too. I pulled up the skin from the back of my hand, where it is most easily accessible and obvious. He was trying to get through to the day hospital on the phone, to book me in for venesection, and kept put one hand over the mouthpiece to talk. I wondered if I should offer any other entertainment. It was lunchtime by now, and no one was answering, so eventually he asked her to take me down there with a note instead.
I knew I had been in the day hospital before, for some complicated blood tests several years ago. They were early morning fasting tests. When I fast, my veins collapse. Like drawing blood from a stone, except this stone bruises. I remember trying to persuade the phlebotomist that time that she needed to use a special thin needle they call a ‘butterfly’ instead of an ordinary needle, but she didn’t believe me until after she failed to find blood. She told me that next time I must be insistent. Only a butterfly will take my blood. I thought I had been. I must have been quite out of it, because I don’t remember getting into the room, only the room itself – beigeish with lots of blue and green chairs and screen partitions. Being lead there yesterday, I realised I had been in the same block more recently to have my bone density scan. It backs onto school playing fields and you can hear school noises when you’re near the windows. O Captain’s assistant went to talk to one of the nurses then left me there to make the appointment. Whilst I was waiting, a man in glasses came in from across the hall and went into the nurse’s station to talk to them. He looked familiar, and looked at me as though I looked familiar too. Later, he came back in, and by then I’d placed him as the Neurologist who sent me to Neuropsyche because he couldn’t see a physical mechanism for my symptoms. I thought about hailing him and giving him an update, but didn’t. On the board it said his clinics were on a Tuesday, but this was a Thursday. Maybe the board wasn’t up-to-date.
To my surprise, I was offered a venesection right there and then. I was a bit worried because I knew I was already less hydrated than I should be to manage my autonomic problems. It was 1pm by this time and I had had two glasses of water at home first thing, a mini-can of pepsi max in the car that I’d kept back from the train on Tuesday, and a bottle of water whilst I was waiting for my appointment. For some people, this might sound like quite a lot of liquid, but it’s barely enough to keep me topped up, let alone enough to counteract taking half a pint of blood out. They gave me a cup of sweet tea whilst they got ready for me, and they seemed confidant they could deal with me, so I thought, why not? All these years of tests and appointments and more tests have taught me to fit as much into each hospital visit as I can. They’re hard enough to schedule as it is. Whilst I waited, an elderly man behind one of the screens woke up and started telling stories to the room in a booming Cumbrian voice.
After my venesection, I was so relieved it was over, that I wasn’t too bothered by the slightly shaky feeling I was left with. They gave me another cup of sweet tea and left me sitting for a while. I know I felt a bit bad because I curled my legs up. But I often feel bad. I often feel shaky. I often feel sick. I’ve been wondering today whether being so used to my blood pressure fluctuating so much actually makes venesection easier for me than for some people.
I decided afterwards to take the short walk from the hospital down into town to get some lunch and a few things I needed, before heading back to campus to wait for Will to finish teaching. In retrospect, this was a little foolish. I was alright until I ate, but the usual rush of blood to the stomach tipped me over. Walking back up to the hospital I was having difficulty picking up my feet, and had to use my old trick of pretending I was an arctic explorer or on a fantasy quest. Don’t lie down in the snow or you’ll die! It sounds childish, exactly because it’s a distraction technique I taught myself as a child, but it works, and often stops me from having to lie down in the street. Sometimes I sing to myself instead, or recite a poem. If you ever see me grimacing and walking a bit oddly, and muttering or humming under my breath, this will be why.
I spent the rest of the afternoon slumped in the staff kitchen in the English Department catching up with old friends and colleagues, which was a lovely treat, and a good way to rest without getting restless. Getting up to go to the car eventually again made me feel a bit poorly, and I spent the drive home yawning incessantly, like I wasn’t getting enough air, but I didn’t feel anything like as bad as I feared I might do. I didn’t faint. I wasn’t sick. The big needles weren’t so bad and the blood did come out and nothing else with it. If this was when I wasn’t prepared, I think I can do this alright. I think the vampires and I will get along just fine, glamour or no glamour.