Beginning of the beginning

This week has been filled with visits to the new hospital... I'm already a haemophilia patient at this new place, so it wasn't a totally novel experience for me. I met with the new surgeons, although that didn't turn out to be as successful as I'd thought it would be. My file was specifically put in the consultant's pile, as per request of the other doctors I'd seen, and the haematologists. However, another pushy patient insisted on getting her file switched with mine, so lo and behold, I did *not* get to meet the consultant himself. I saw the registrar instead (Thursday), had my MRI on Friday, and still getting over the to-ing and fro-ing today.

The new hospital is at least 90 minutes from my home, which makes each visit a day trip. I was disappointed, to say the least, that a bossy, self-righteous woman got me pushed out of the queue, despite the doctors' requests that I saw the consultant himself. I suppose the clinic was busy, and nobody there knew me in person, so I had to swallow it and accept the wasted day trip.

Friday's MRI was a challenge in itself... Not least because it meant waking up at 6.30am to arrive at the hospital for 8.50am, but it took three people to put a cannula in the only patent vein I seem to have left! I don't know whether it's just me, but the ONE part of myself I can't stand people poking at is my elbow crease, like *right* in the crease - probably because of previous bad experience and skin graft harvest, but still!

They did manage to cannulate me in the end, and inject the contrast. I hate MRIs, because for starters I'm terrible at keeping still without getting those irritating itches, and second of all, the noise is so intermittent that when you think it's all over, it starts again and you look like you've just had an electric shock. Yesterday's scan took about an hour, and made me dizzy from top to bottom at the end... Getting up from the table, I was stumbling and hoping nobody would see, when the radiographer asked if I was alright. What's worse is that he then commented about how being in the scanner does make you very disorientated in a slightly awkward way, which of course made me feel like such a pathetic fool!!!

In any case, I'm back there at the beginning of May, and at the haemophilia clinic in June. Finals are coming around too fast, and I'm still lazing around; much to my regret, I'll soon realise!

Moving on...

10th April 2013... I would never have anticipated that one appointment would bring so many changes to my care and probably to my life. I was transferred to the NHS by my haemophilia consultant as I have a bleeding disorder that cannot be fully looked after in the private sector.

When I arrived at the clinic on, my usual consultant hadn't yet arrived, and my notes were instead picked up by a different consultant (who turns out to be one of my lecturers), who told me he'd be with me shortly. When I was called in, we talked about my surgery and about medical school, when someone knocked at the door. I was surprised to see my usual consultant in the doorway, who noticed me straight away and sat down to chat. The three of us discussed what had happened during my previous admissions, which led my doctors to decide that I wasn't adequately covered for the bleeding problem. They decided that I should be moved out of the private sector, and into the NHS, to receive all my care at the haemophilia centre, so if I needed any more surgery, they could co-ordinate things from the haemostasis point of view.

They said it'd be around a month until I got to see the plastic surgeon, which felt like such a long time since appointments can be booked for the same week in the private sector. However, I was lucky that on my way home, my consultant phoned to tell me that the plastics team would be able to see me the following day. Unfortunately, I had a mandatory GP placement to attend and a public health presentation to make, but my consultant insisted that I attend the appointment and therefore contacted the placement directly to inform them of the situation. 

I saw the new doctors on the Thursday, who said that I should also be seen by the congenital hand anomalies clinic, and that I'm probably going to need another operation. My appointment with the new clinic is on Thursday. It is with mixed feelings that I move on, but I know that I can always see my old surgeons any time, given the incentive that the private sector is run on. I'm being treated like a colleague, and have been told on more than one occasion that I should have expected much more from the private sector than I got. Haemophilia have really looked after me so well and treated me so much better than I've been treated by so many people in the past. I can't wait to begin my new journey, but after four years, it's going to be hard to move on.

Three years on...

6th April 2010...

Both the best and worst day of my life so far, without a doubt. At around 11am, pretty much as I type this, I had an anaphylactic reaction whilst unconscious, to intravenous Augmentin; a drug containing penicillin. Strange as it may sound, I'd taken penicillin for weeks pre-op and had no problems until the test dose of the intravenous preparation.

Looking through my medical notes, those few minutes were grim... And I'm so glad I wasn't conscious through it, because the scars left behind are more than enough for me to deal with. The night I spent in the Critical Care Unit was horrible; I'd never, and still haven't ever felt so ill in my life. There were moments where I thought I would die, and moments when it felt surreal to be alive after what had happened.

I don't know what drugs they were, but something they gave me made my whole body shake. It was so very strange not to be able to keep myself still, but the adrenaline they'd given me was making my heart rate sky high. Something wasn't quite right with my breathing and my blood pressure was really low.

That night felt like the longest night of my life. I was admitted to the Unit at around 3pm, and was there till around midday the next day. I know it's not that long, but when you're only sixteen and were supposed to just be a day patient, things like this shock you and floods of emotion are released.

Without the fast actions of my consultant, I'm not sure what would have happened; I don't know quite how bad the situation was because I wasn't awake. But I'm just glad that the experience wasn't any worse than it was, because that was quite enough for me!

Nonetheless, I can't believe I've come this far. From 2009, I've suffered from the AVM and Ehlers-Danlos Syndrome, been diagnosed with a platelet disorder and get persistent stomach troubles. But, I've got 11 GCSEs, 3 A Levels and am now finishing my first year of Medical School. So many people and events have made me into a different person to who I would be otherwise, and every single person who's loved me, wished me well and believed in me deserves to share the happiness and the accomplishment I'm feeling today.