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Tascha's Story

 

It all started in September 1999; I had just turned 19 and was having a great time.  I was in my second year at university, studying a Masters of pure maths.  I was fit and healthy, or so I thought.

I started playing football for the university women's team at the beginning of the term.  I wanted to keep fit and I love team sports so I joined the football squad.  I played about four times a week for roughly two hours each session.

There were always a few girls who limped off the pitch at the full time whistle and I became one of them after a couple of months.  You know how you warm up at the beginning of a match and warm down at the end?  Well, our warm downs became so long we'd have to start warming down at half time just so we could go in with the others.  Then one Sunday, during indoor practice I went to kick the ball and blacked out; I actually heard myself hitting the floor.

I first went to see my university GP in June 1998 with shingles.  Looking back that was the first sign that my immune system was in trouble.  In October 1999 I went to see her again because I had a cramp-like pain in my leg just behind the knee, bruises around my knee, I was tired, dizzy and having migraines.  I hadn't twigged that they might be all connected I was just annoyed that I wasn't able to be as active as I wanted - that just wasn't me.  The doctor prescribed pain killers and advised me to warm up properly.  I wasn't convinced it was that and I kept turning up on her doorstep, each time concentrating on this painful leg but all the other problems were still there.  To be honest, I just wanted to play football and was annoyed this was stopping me.

One Thursday in December I came in complaining that my leg hurt again, she recommended that I should have a range of tests in the hope of picking something up.  Monday the 13th of December was a very unlucky day for me.  I had a Black Tie Ball in the evening with my snowboarding club.  Just before leaving, I got a phone call from the GP saying that I needed to come in the next morning.  My blood test results had come through.  She said there was nothing to worry about but I was slightly anaemic and would need further investigation.

The night of the ball was horrible - I had butterflies the size of hawks in my stomach.  What on earth is 'further investigations' anyway?  Then to top it off, I argued with my friend!

On the Tuesday the doctor sent me to hospital where all my favourite things happened - blood tests, urine samples, throat swabs and loads of questions.  The one question they didn't ask me was what my granny died of... at the time I wouldn't have known.  I never knew her.  She died young.

So, they suggested more tests including an ultra sound on my leg in case it might be deep vein thrombosis (DVT), blood tests for glandular fever, anaemia, liver and renal problems and X-ray for tuberculosis.  These are not the things you expect when you are 19 - DVTs glandular fever and tuberculosis - they are serious.  You hear of terrible complications with these - newspapers report on people who have died from things like that and I was young and healthy and. not ready for this.  I saw two consultants - they told me the results for everything were negative except kidney function which needed more analysis.  They took yet another set of blood tests, more urine samples and told me I looked quite pale - which was nice!  They had said that if the results weren't too bad I may be put on steroids and could still go on the family ski holiday on Christmas Eve - just two weeks away.  But the results showed chronic renal failure.

My dad, Tony, had taken the day off work to be with me and as he snored in the background, the consultant decided that it would be necessary for me to have a kidney biopsy, to find out 'the extent of the damage'.

Tascha seaI was 19...  and, joy of joys, on Friday the 17th December at 8am in the morning I was introduced to my hospital bed for the day.  The biopsy was performed with Tony watching.  I don't know if it was worse for him or me, but judging by how hard he squeezed the back of my head when they stuck the whacking great needle in my back, it wasn't pleasant for either of us!  Thankfully he brought me white chocolates for the anaemia (he's a joker) and ate them while I was nil by mouth!  It was the last day of the Christmas term, I was missing the partying, but worse than that, my leg still hurt and no one seemed to care.

Finally, my family took me home - not to my university digs but home home.  There I slept for about 8 years!  Just being woken up for the occasional 'don't take the piss - we need it for testing' gag.  I was sore and grumpy but mainly I was feeling frustrated because, after all this, my leg still hurt and I was having serious difficulty just walking.

Tony was a project manager building the Millennium Dome site and three days before Christmas Tony, my brother Stu and I went to watch a dress rehearsal for the big millennium New Year celebrations there.  The Dome is a big place; I couldn't walk on my own and had to lean on Tony and Stu.  While we were there my mobile rang, it was the results of my tests.  I had a terrible sinking feeling.  The words "permanent and irreversible damage" stuck in my mind as they told me I might have to go on the kidney transplant list.  I felt absolutely gutted; as if someone had just taken away my whole life.

Two days later I was taken to the local doctor, Dr Tomes, again - I could hardly stand by now.  She moved heaven and earth to arrange an urgent ultrasound on my leg.  No mean feat at midday on Christmas Eve.  I knew that if it was a DVT, I would have to cancel the family holiday we were due to go on later that afternoon.  To be honest I didn't want to go away now.  How could I be surrounded by so much snow but not be able to stand?

Unfortunately a DVT is exactly what it turned out to be, a big one.  So I had to learn to inject myself with fragmin into my tummy every day for two weeks, started taking warfarin and had more beautiful blood tests.  Happy Christmas Tascha!!

Tascha danceCancelling the family holiday at Christmas is hard.  I couldn't drink and I remember thinking 'I'm 19 and I don't want to be ill anymore'.  Family and friends were amazing.  Have you tried to buy everything you need for Christmas at 3.30 on Christmas Eve??  In the end, we went to my aunt and uncle's for Christmas dinner.  My parents were pretty upset - more for me than anything but we all made the best of it by making light of things.  It often amazes me how incredible human beings are and how some people just seem to have this terrific strength to come alive under the most horrific situations.  It was when I was talking to my aunt that the condition Lupus came up in earnest.  My aunt, Lynn Faulds Wood, used to present "Watchdog" on the BBC and is now a patron of the St Thomas' Lupus Trust, along with my uncle John Stapleton.  Early in January I was told I had lupus, which was terrible for my family and for me.  I knew nothing about lupus - just that my grandmother had died of it.

Lupus is an incurable (at the moment) autoimmune disorder where your immune system goes haywire and attacks the body's organs.  I have Lupus Antiphospholipid Syndrome and SLE.  In my case it attacked my blood and caused it to thicken.  It had also attacked my kidneys, about 75% of my kidneys were scar tissue.  Basically I will have to have a kidney transplant in the next 5 or 10 years.  Although it is quite a common condition affecting 1 in 750 women and 1 in 200 black or Asian women, people don't really know much about it.

The year had been very difficult - I felt very alone.  You don't get sympathy when you don't look ill.  My work at university had suffered although the faculty was brilliant.

I don't remember much about the early days of being diagnosed, but I do remember how quickly I was seen at St Thomas' Lupus clinic.  I was seen by Professor Hughes who answered all my questions.  It suddenly felt like this was something I could live with, I didn't want to but I could.  For the first few weeks, there were blood tests every day.  I very quickly learnt about Lupus and it wasn't long before I knew more about lupus than many of the non-specialist nurses and doctors.  But looking after a serious illness is a full-time job.  Each time I wanted a blood test I had to go to the doctor for a form so the nurse could do the test, and then back to the doctor for the results.  That's because I took responsibility for looking after myself.  Although that put me in control, it was time consuming and frustrating.

There are days when I feel terrible, so low and fatigued that I just want to cry.  The worst thing is that people don't realise there is anything wrong with me because I look well on the outside, just a bit pale.  Sometimes I find my housemates whingeing that they have a sore throat and a stuffy nose, and it's like, HELLO?

So, why did I get lupus?  Unknown to me, it was in my genes all along and being on the pill triggered it off.  My GP had no idea what was wrong with me, but listened to her gut feeling that something was wrong and put me down for every test under the sun, thank goodness.  Family friends scared me by searching the internet and presuming my life expectancy was months.  I want to show that lupus isn't the killer they seem to think it is.

What's my life like now?  I've defied lupus and got my life back.  I'm vice captain of the women's football team at university, captain of the snowboard team.  I took part in the Big Air, boarder-cross and slalom competitions in national university competitions held in Austria and I've been teaching horse riding in California for the summer with Camp America.  But every time my leg hurts or I get stomach ache, I always worry that it might be connected to the Lupus or the medication.

My final message?  I never knew Lupus existed.  Most people still don't.  I'm lucky my GP had a feeling and lucky to get in to St Thomas's Hospital, but we need to start giving people with lupus more than just luck.


Update:  June 2004.

Tascha successfully climbed Ben Nevis in aid of the St Thomas' Lupus Trust and raised over £9,000!!


Update:  September 2005.

Isn't it funny how things can turn around so quickly; how things can get better almost as quickly as they went wrong in the first place?  On the 16 September 2004 I remember waking up and feeling happy - not well immediately, but happy!

In June 2004, I was living in Aberdeen, I had qualified as a secondary school maths teacher, I had walked Ben Nevis, I went on a climbing/walking holiday in the Dolomites (the mountain range in the North of Italy around the Lake District) and was riding again almost everyday and training problem horses.  But I was becoming increasingly fed up with struggling with everyday life and the oedema was so bad that my feet would swell either side of a strap on my shoe. I felt fat (the steroids had given me a moon-face) and miserable and no one could understand.

My blood tests were getting worse and worse (kidney function is measured using creatinine - amongst other things - a healthy creatinine level is around 100, when I was first diagnosed in 1999 it was 188, and in September 2004 it reached 1000) and my pill box was getting larger and larger.  I was taking pills to boost iron, pills to shut down the immune system, pills to prevent me absorbing this and pills to balance pills (at one point I was taking over 40 pills a day!).  I then had to follow a low potassium, low phosphate, and low salt diet.  It was impossible; you know when you are feeling down and you eat some chocolate - well that has potassium and phosphate - can't do that!  No bananas, no chocolate, no potatoes (unless they have been boiled in plenty of water and the water thrown away), no vegetables (unless boiled to death and the water thrown away), no chocolate, no fruit flavoured sweets, very little dairy products, and did I mention no chocolate?  Well, you see what I mean.

Tascha and horseAt the August Bank Holiday 2004, I competed in the Scottish Championships for Endurance Riding, riding a friend's horse, Ria, and we came 4th in our group.  It was a brilliant weekend and a happy memory that had to last for quite a while.

I knew that, due to my worsening health, I had to move back home.  And so on the last day of August I moved back to my parents' house in Surrey.  We all knew the transplant was imminent, however instead of joining the donor list we had opted for live-related transplant.  Tony was going to donate one of his living kidneys to me.  If you are going to go down the living transplant route, you have to think about your family / friends in a way that feels very callous.  Transplants can last up to 30 years however the average is 15, so in 15 years, whose kidneys are likely to be in better shape?  So for me, knowing that in 15 years my brother will only be 37 meant I keep his 'spare kidney' as a reserve.

A couple of days after moving back, at a clinic they told us that Tony's work-up was going well and that we should be ready to do the transplant before the New Year.  That night the clinic called asking me to come back up the next morning, things had taken a dramatic turn for the worse.  They took more blood and told me that they were going to book me in to have a Peritoneal Dialysis (PD) catheter put in.  This was the start of dialysis!  I had just turned 24!!  Suddenly in this incredible crisis, my brain switched my heart off and I thought really rationally - I didn't cry or scream, just calmly booked it into my diary.  As soon as I got home I forced my family to go out to celebrate the beginning of taking action to get me better - it may seem like a strange time to celebrate, but I didn't fancy the alternatives much!

I had discussed the dialysis options with a doctor when I didn't think I needed to go on it, let me summarise my thoughts now.  PD - there is a permanent tube that goes right into your middle, you have to clean it yourself and look after it yourself.  This is good from an independent point of view, but think carefully about your house - are you going to be able to keep things sterile when you need, how easy is it to get from the nearest sink to your bedroom without touching anything with your hands?  Also if, like me you are on an overnight bag, it takes 40 minutes to set up before you can go to bed and then you have to be in bed for 10 hours (ish).  I also had one to do during the day, you are constantly thinking about your next dialysis session.  Haemodialysis - you have to go to a unit 3 times a week for 4 hours and you cannot move off the bed or chair, you do get to watch tv (usually) and catch up on sleep.  If you are on haemo long term then you need a fistula, and most people with them agree that they are ugly (most people who understand what they are think they are like bravery medals!).  You do get days off and there are no permanent tubes.

I know PD works for some people but, as soon as the tube went in I felt very unwell.  Three weeks later they took it back out as I had peritonitis - an extremely sore infection.  A date was finally settled for the transplant of 16th November 2004.  I still needed dialysis and so I had another catheter put into my shoulder that bent down into a main blood vessel in my neck.  This was done under a local anaesthetic and I was so scared, they dosed me up with sedative and I forgot the whole thing - sedative is one of the best inventions in hospital.  I called the contraption "my bells" and I could even have a shower with them, if I was adequately waterproofed.  I started on haemodialysis and at first it wiped me out, but I did get used to it and it became easy.  It meant that I had to sit attached to a machine for 4 hours at a time several times a week but it meant that I got days off!!  Normally to have Haemodialysis, you have to have a fistula put in, they merge a vein and artery to get strong enough blood flow, but there wasn't time before the operation for me.

Monday November 15th came along pretty quickly, my family and I went for a celebratory meal and Tuesday morning Tony was wheeled down to the operating theatre shouting "I didn't agree to do this" (told you he was a joker).  I was terrified because during the education you are told what to expect when you wake up - tubes in your neck, drains, scars, dressing, catheter and at least one drip full of morphine.  But when I woke up none of that mattered - I woke up feeling happy!  I sung to the porter all the way up from the recovery room.

Tony got out of hospital 48 hours after the operation; I still think that is amazing!  And I left four days after him.  It took me 6 days to walk well enough to be allowed out of hospital!  People can say what they like about the NHS but I really think what they have done for me is spectacular and I cannot express the incredible difference it has made to my life.

My transplant was not the easiest as I had been on blood thinners but it seemed to be very well.  The week before Christmas there were complications, my kidney function rose suddenly and I was admitted for rejection.  Thankfully the tests showed it was not rejection but a lymphocyte pressing on the new kidney (his name is Kevin by the way) and so that had to be drained in another operation.  I also had to change pills, but this all shows there are ways and means for these things and there are often alternatives.

Since then things have been terrific, I bought my first horse, went on holiday to Oman, got a job (I had the interview 4 months after T-day) and things are really looking up.  Kevin and I have our one year anniversary coming up in November and to celebrate we are having a big party with Scottish country dancing!  Now I just need to shift the weight that I put on when I was taking a high dose of steroids - I wonder how I will do that. Oh yeah, by doing all the things I love; riding, snowboarding, playing football, and generally being young.

Update:  March 2009

I have just re-read my story; it's quite traumatic really isn't it?  Sitting here in my office in central London, it's really quite emotional to remember how ill I was.  It's a very difficult thing to look back on.  At the time you are working so hard to hold everything together and get on with life as best you can, that you don't leave time to feel sorry for yourself.  I have met many people who have asked if I ever think "why me?", but I can honestly say I haven't.  I'm not a saint and I have wished the whole thing would go away, but I honestly think out of all the people in the world maybe I have Lupus because I can deal with it in the "right" way; that I have the strength of character to be able to learn and grow from this.  maybe?  But looking back on the worst times makes me well up now, I think it's partly because I know I could go through the whole thing again and I will not have time to feel sorry for myself then either as I will have a very busy life to hold together.  It sounds strange but Lupus has made me the person I am today and I couldn't be prouder.  I am determined and focused and I work hard to make sure that I appreciate the important things in life.  I am well aware of the truth behind the saying "life is short".  But working out what YOU want to fill it with, now that's the challenge!

So what have I been up to?  Well, I bought a house, have been horse riding four or five times a week, changed jobs, got a promotion, attended every party I have been invited to and been on some amazing holidays.  I have been living, I mean, I have been really living.

The transplant has made so much difference to my life that in November 2008 we threw another party for Kevin - it is so amazing to see the extended support from friends, family and colleagues.  I cannot thank everyone that has helped me, my friends and my family over the years enough.  It is not easy to be close to someone going through this either!  This year Kevin's party is going to be bigger and better - he will be 5!!!!

It hasn't all been plain sailing though; together Kevin and I have been through, relationship break-ups and make-ups, we've had to deal with a few accidents (I have broken my hip socket and three vertebrae in the last four years falling off aforementioned horse) and numerous numerous hospital appointments and clinics.  Somehow the appointments collect and you'll have a few weeks where you are in and out of every different department in various hospitals and it feels like a never-ending reminder of the fact you are 'ill'.  In this country we are so lucky that we get this attention from the NHS and that we are so well-cared for but when you are just trying to get on with life it feels like such an inconvenience.  My company (in fact every company I have worked for) are fantastic about the lupus and transplant, and are very supportive with the hospital absences.  But for me it's so frustrating that I can't seem to escape these places.  And I have the age old backhanded compliment "but you look so well" almost everywhere I go.

This year I have some serious goals, I want to start competing with Omid (horse) and I want a clear round at show jumping and cross country, and a single 6 in any dressage test.  I am also going to Malaysia in the summer to go jungle trekking and scuba diving.  It really is true - the world is my oyster.  And as long as I keep taking my medication and attending these clinics and being super-aware of any changes in my body, I'm sure it will continue to be.

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.  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 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.  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........

Updated October 2010