Update October 2010:
Every so often I read my story and look back on the last period with the intention of updating my story. Sometimes I feel that the latest section of my life is not worth sharing because I have not had an eventful time, but then I think it’s good for people to know that there are quiet times. Sadly though, the last 18 months has not been one of those times.
Amongst the highs are a once in a lifetime trip to Malaysia; snorkelling with turtles and sharks, diving on reefs of soft coral, climbing jungle covered mountains, being scared half to death by monitor lizards falling out of trees, sleeping in a rain forest, visiting tea plantations, visiting tropical islands and eating the most amazing fresh fruit ever… Closer to home there have been successes too, my horse, Omid and I have started competing! (Omid and) I recorded my chapter for the “Lupus, what’s that?” film that’s now on the St Thomas' Lupus Trust website. I still have my job (even more of an achievement with construction in this economic climate)! I have started a diploma in horse listening, I am moving house and I have hit another milestone – I am old, sorry I mean 30!
Now for the lows: Omid impaled himself on a gate; after several very large stitches and a couple of months off he is right as rain again and fit to compete. And then the biggie…
Those of you on Warfarin, please don’t be scared by this, it was a freak incident. I was riding one day when a dog savagely attacked Omid and in the chaos I fell off. Omid ran away, the dog chased him and with my adrenalin pumping I chased both of them – although a good deal more slowly. Thankfully, Omid got back to the stables without any major injuries (and negotiating the underpass of the dual carriageway!) and I was okay too. The owners of the dog were also very responsible and the dog was put to sleep. However at some point it seems I tore something inside my abdomen. I already had an infection and had been given antibiotics. These were ones I had previously used with no problems but as always, I was warned they could thin my blood further than the warfarin was already doing.
A few days after the dog attack, at work very early in the morning I felt very light headed and hot. I started to recognise the pain. I don’t think I have mentioned on here that in 2003, when on holiday in the Alps, I suffered from a burst ovarian cyst - the feeling of internal bleeding is not one you forget quickly. I was 70 miles from home but drove back – I’m not sure why the homing instinct kicked in but I’m glad it did. I had to pull over three times on the way home but I made it. Once at home my brother, Stu and my boyfriend, Ant took me to A&E at my local hospital.
When you have a long-term illness, you know your body, you know the little quirks and if you feel that something is wrong, get it looked at until someone listens to you. Great advice, more easily said than done.
The A&E doctors didn’t believe me, not for the first time - a fact that I find so infuriating. They kept palming me off saying they were waiting for a machine – it turned out they thought that I had constipation! To cut this story short, during the night as my pain worsened, I had a scan that showed up the extent of the internal bleeding. I was taken in for emergency surgery. Three and a half days later I woke up. I had been in an induced coma. (Just a quick aside here to say how many wonderful people there are in the world, my mum was in Canada at a diabetes conference and one of the drug company representatives flew here back home so she was there when I woke up). Thankfully, I woke up in one of the best intensive care units in the country with all my family around me. Sadly, I was allergic to some of the drugs I had been on and I was suffering with nightmares and drifting in and out of consciousness. Within 10 days I was back out and home (which was amazing and a testament to how well I was looked after in the ICU) with 51 staples in my tummy but no explanation of exactly what had been damaged. A few days later, after more discomfort and again knowing my body well enough to know something was wrong, we discovered that my bowel had become knotted and had scarred closed. I needed another operation and another stay in intensive care. I left hospital just 3 hours before the party for Kevin the Kidney’s 5th Birthday.
Although I was all bandaged up, full of painkillers, in a wheel chair (decorated with tinsel!) and couldn’t dance, I was so touched by how many people turned up, especially since it was a close call as to whether I would actually make it myself!! You can never underestimate the effect you have on someone by turning up, particularly when someone is unwell. People sent flowers, chocolates, gifts and even musical balloons and I felt quite undeserving (after what I’d just put them all through!) but very, very grateful.
After the party, things quietened down. I was recovering from the surgery and had changed blood thinner (I now inject Clexane everyday). When you’re at work, dozing on the sofa in front of the TV sometimes seems like heaven doesn’t it? You forget that when you have no other choice it is actually hell. But I was up and walking about in no time and by Christmas I was back riding Omid!! Happy days.
The recovery wasn’t all plain sailing, I started to suffer with flashbacks and nightmares; reliving things the way I had in hospital, through my drug allergy, it was dark, green and wibbly like something out of the Matrix. It still makes me feel sick when I think about it. The transplant team and my GP suggested that I saw a clinical psychologist. This really, truly filled me with fear. Am I losing the plot? Why can’t I cope? What’s wrong with me? But in reality, speaking to Beth was great; she is a transplant specialist and understood all the medical stuff so I didn’t have to explain it that much. She told me I had Post Traumatic Stress Syndrome and Depression. Almost as soon as she said it, I felt better – like I could relax now because the way I was feeling wasn’t my fault. And things started to fall in place… I hope I haven’t oversimplified things, it wasn’t as simple as switching on a light but the realisation that your brain works in different ways depending on circumstance made me understand that there was no hurry, and suddenly it wasn’t the weight on my shoulders that it had been.
A few weeks ago I had another very-mini scare. I want to tell this story because I feel a lot of our treatment is based on luck and sometimes we have to stand up for ourselves. While doctors and hospitals are only doing their best to look out for us, sometimes they do not realise the impact they have on the rest of your life.
I caught a virus recently; it was a nasty one and wiped me out for a couple of days. On top of that, I needed antibiotics and the duty doctor wasn’t someone I knew and he didn’t know me. He insisted on taking a blood test to check on the kidney. I protested as I knew because of the virus, I was badly dehydrated, hadn’t eaten for a few days and I knew my results would be bad. He was only looking out for the kidney and I took the blood test – I don’t want to seem obstructive or like I am not looking after my kidney. The creatinine came back sky high, so he phoned the registrar in Guy’s Hospital (who I also didn’t know). The registrar insisted that I came into hospital so they could keep an eye on me. I could not take anymore time off work without it being unpaid. I spoke to the transplant clinic in Guy’s who do know me and explained the situation, they allowed me to give myself a chance to rehydrate and do the blood test locally the next morning. The results came back a little elevated, as the transplant clinic and I knew they would because I was now on antibiotics. Another blood test a week later showed that all was fine again!
So, once again life is back to normal, whatever that is! But as tomorrow is the anniversary of the day I went into a coma I can’t help but worry about what is to come. Every year for the past eleven years, something has happened to totally derail me; some are medical (like the coma, shingles or viral meningitis etc) and some are more self inflicted (breaking my back falling under my horse for example), but they happen, and as I approach a clear year and I have so many things to look forward to I can’t help but worry about the things that I can’t predict.
On the other hand, after a year which saw me doing amazing things most people never get the chance to do… I’m also excited about where the next 12 months will take me........