Medical History!

My childhood was fantastic. I was active and lucky enough to have the opportunity to be involved in all sorts of activities. As a definite water baby, swimming was a favourite but I also took ballet classes, piano lessons and went out for family days sailing, cycling and dog walking. We were always on the go!


Sleepy Sailor!
I enjoyed going to school and did well through primary school. When I reached secondary school, I got more involved in swimming and trained 3 times a week. I joined stagecoach and started saxophone lessons and singing lessons. Drama was a favourite subject but I also did pretty well in most of my other classes too. 

In September 1999, aged 13, I went into year 9 at school. This was a big year as students could get involved with Ten Tors - a well known orienteering challenge in the South West that takes place on the wilderness that is Dartmoor. There is also more opportunity to go on school trips with a bit more freedom and without the worry of exams looming. And so it was that I would spend my Saturdays swimming in the morning, at stagecoach in the afternoon and my Sundays trekking across Dartmoor. In short, what I'm trying to say is that there was nothing to indicate that I was anything but a healthy, happy young person. 

In October of that year, I went on a school Dance and Drama holiday to the south coast of Spain. We had such fun enjoying the sunshine, exploring Barcelona and dancing in the streets! When I got back, there were signs that something wasn't quite right. I'd had a few joint pains earlier in the year - mainly in my ankles so I put it down to a sprain or strain. These started to get worse and started to show in my hips, wrists and elbows. After a few weeks, they were constantly painful and affected nearly every joint to the point where holding a pen to write was painful. As well as the joint pains, people kept commenting that I looked yellow. I found this very strange as I hadn't noticed anything and still felt pretty normal. I was still pushing the joint pains to the side and getting in with as much as I could. The Ten Tors training was proving more challenging than I expected and I was struggling with that but I out that down to the fact that it is a tough thing to do- especially in the colder months when there is a bitter wind and lashing rain!


Things start to get blurry for me here. I was young and in pain and realising that things weren't right. The final straw for my parents was after a trip to the ballet. We went to see Matthew Bourne's Swan Lake. Mum noticed that I was clapping very strangely, as if it were painful for my hands to touch one another. My Dad, as a GP, made sure that I was seen at the surgery as quickly as possible for a whole host of blood tests. I'd become uncharacteristically weak and don't remember things particularly clearly. I do remember that the blood tests came back later that evening and the GP came to the house. Even given the fact that she was my dad's college, this was not normal and it was clear that something must be very wrong. I was taken to hospital that evening.

I remember small snippets of this hospital stay. Things like Dad bringing in a thermos flask of food that I liked because I wouldn't eat the hospital gruel. A teacher giving me maths work to do. Thankfully I don't remember the nasty stuff. I had numerous investigations including a bone marrow biopsy to try and find out what was wrong. Words like leukaemia, parvovirus, inflammation were all being thrown around and I was being given various medications to try and ease the pain including anti-inflammatories. Derriford hospital did not know what was wrong with me. From my Mum, many years later, I found out that the consultant tried to discharge me. He said to come back in a month to see if things had got better or worse and they would do further investigations then. It is very unlikely that I would be where I am today if my parents had listened to that advice.


With my incredible family- always my rock!

Mum insisted that things were investigated further and I was transferred to Bristol Children's Hospital. After more tests, I was eventually diagnosed with Auto Immune Hepatitis. What this basically means is that my immune system has rejected my own liver and treats it like a foreign object or rejected transplant. Once this diagnosis had been made, I was transferred to Birmingham children's Hospital. At the time, this was where the leading specialists were based. I was put on a high dose of steroids and immuno-suppressants. These essentially dampen the immune system entirely so I was put in an isolated room as I was at high risk of getting any infections that might be on the ward. By this point, it was creeping closer to Christmas. The things I remember most are that Dad went out to get a t.v to put in my room, I had hundreds of cards and flowers around me from people that cared and friends who knew me really well brought in craft projects to keep me occupied. I even had a mini christmas tree to decorate!

I was discharged two days before Christmas. I slept for most of the journey home across the back seat of the car but woke up towards the end of the trip. As we drove up the hill to our house on that icy December day, we saw our ducks trying desperately to walk back up the hill having flown away. Their little ducky feet were completely useless trying to get uphill on ice and it was very entertaining! We did manage to get hold of them and take them back rather than leave them struggling.

Throughout all this chaos, my younger brother, who was 11 and in his first year at secondary school, was trying to live as normal a life as possible. I can't imagine what is must have been like for him not really knowing what was going on and having to stay with neighbours and friends whilst Mum and Dad drove between various hospitals. He never made any fuss or showed any sign of resentment at all the attention that I was getting. 

After a restful holiday, I was able to get back to school. I did have to go for weekly blood tests and monthly appointments in Birmingham whilst my steroids were reduced. Then my appointments were every two months, then every 3 months and finally every 4 months. I managed to build up my activity levels and it wasn't long until I was back swimming again and in September 2000, I once more started a Ten Tors training! I sadly never managed to complete the challenge as one year it was cancelled due to foot and mouth and another I suffered from Achilles tendonitis. 

Skip forward a few years and I managed to get through my GCSEs with pretty good results- I came away with 5 As and 4 Bs. This was not without a few hiccups along the way. My first immuno-suppressant was azathioprine but after a while of treatment, I had some sort of adverse reaction to it which is not uncommon and had to be changed to mycophenolate. Not long after that, I reacted badly to the mycophenolate and had to be changed to tacrolimus, a much less widely used immuno-suppressant. It took some time to get the doses right but we got there eventually!

I didn't do quite so well in my first year of A-levels and after the first year, made the choice to go to boarding school to try again. I got through with reasonable results, a bit of the normal teenage angst and more hospital appointments. The day before a maths exam I was admitted to hospital with a suspicious rash that was suspected meningitis. It turned out not to be but no diagnosis was made and I improved overnight so went back and sat the exam. Mostly though, I got through unscathed and gained the results I needed to go to university.


Summer BBQ at Taunton School

In September 2005, I went to Brunel university to study Modern Drama. Whilst I had experienced done level of freedom at boarding school, this was a completely different experience. I struggled during freshers week with so much focus being on getting drunk to be able to integrate. Through joining choirs, dance club and the musical theatre club, I managed to find a group of like-minded friends who were understood my condition and the reasons why I didn't drink. I got through university pretty smoothly health-wise. A small blip in my third year meant I had to be taken to the nearest hospital. I was suffering from severe right side abdominal pains and went to A&E. Once again, no diagnosis was made and I improved overnight so was sent home. After a change of course after first year, I graduated in 2009 with a 2:1 in English Literature. I also left having been in 8 shows, probably around 16 concerts and 2 dance shows, not to mention some great friends and fabulous experiences. Not only that, but throughout my 4 years of study, I held down a part time job during both term times and holidays so I could contribute to my degree (and expand my shoe collection!)

After graduation, I moved back to my parents in Plymouth and decided to take a masters in Business and Management. My healthcare was moved to Derriford Hospital and again, I got through the course without too many health complaints. During this course, I found out that one of my favourite clothes boutiques was being sold. I didn't want to see it go and after lengthy discussions, took the opportunity and bought the business. For two years, I ran the shop almost completely on my own. I had incredible support from my family and a member of part time staff but I was still in the shop at least 6 days a week working exceptionally hard to keep my head above water. It was exhausting and I began to feel constantly drained. I felt that if I carried on, it would be detrimental to my health and happiness so when the time was right, I shut up shop and headed for the big city... Bristol!!


Masters Graduation 2009
I settled into Bristol and my care was transferred to the BRI. I absolutely love it here but health wise, the last 2 1/2 years have been a total roller coaster! In January 2013, I was warned that my blood sugars were high and bordering diabetic. This was put down as being due to bring on quite a high maintenance dose of prednisolone. I was advised to regulate my diet which was actually pretty tricky given that I have always eaten quite well. I cook most meals from scratch, don't overdo fizzy soft drinks and have a good balance of everything required. As a keen baker, my downfall has always been cake so I sent my baking books packing back to Devon to try and resist temptation. My blood sugars and HbA1C were closely monitored and later that year, I was told that I had crossed the line into diabetic. I was put on gliclazide to bring my sugars down alongside my restricted diet.

In January 2014, I was working as manager of a shoe shop. This began to take its toll and my joints became very painful. My job involved going up and down stairs all day and I was signed off for 2 weeks to give my knees time to recover. The day before I was due to go back to work, whilst a Dad was visiting, I cooked us a lovely meal of chicken. He left and drove back to Plymouth. In the early hours of the morning, I began to feel a pain in my right side under my rib cage and felt sick. This Is very unusual for me so I called dad to check if he was ok, thinking it must have been a dodgy chicken. He was fine so I tried to get back to sleep. An hour later I was in so much pain I could hardly move. I made it to the bathroom and was very sick. I managed to use the voice activation on my phone to cal 111 as I couldn't make my hands work properly. They called an ambulance and I managed to crawl downstairs to wait for them and let my parents know what was going on. Most of the rest of that night is a bit of a blur. I was moved to a ward the next day and spent a few days with various drips in for fluids, antibiotics and painkillers. The diagnosis this time was colycystitis ( an inflammation or infection of the gall bladder). Once I had recovered enough to manage without IV antibiotics, I went back to mum and dads for some r&r. To add to my worry, I had a holiday to Egypt planned and it was touch and go whether it not I would be able to go. Luckily I made a quick recovery and it was decided that some sun and relaxation was exactly what I needed - I definitely wasn't going to get those in the UK in January.


Soaking up some sunshine in Egypt :)
After my return from holiday, I cut my hours at work to four days a week. I also came home to a variety of letters from various hospital departments. One of these was from the gynaecological team in Bristol. My smear test had come back showing abnormal cells. I was referred quickly to the team at St. Michaels where further investigations were carried out and it was decided I should have a cone biopsy to remove these cells. Because I have an exceptionally low platelet count, any procedure like this requires a lot more planning and coordination than normal. I would need to have the op as an inpatient and a platelet transfusion needed to be arranged. In march 2014, I went in for the op and all went smoothly. Recovery was expected to take longer than with a regular patient and so I was signed off work for a further week and again, spent this being looked after by my parents. 

Between this minor op and December 2014, I was admitted to hospital a further 4 times, each time with colycystitis. It presented differently on every occasion which made it difficult for myself and the doctors to know right away what was wrong. I suffered a pain. In my left side below my rib cage, pain very lowing my pelvis, chest pains and other niggles. When it got to hospital admission number 5, I was getting to the point where I was scared to eat as we couldn't establish what was setting it off and usually gall bladder problems are exacerbated by fatty foods. I couldn't have my gall bladder removed as my liver is in too bad a state and my platelet count is very low meaning the normally routine procedure become a life threatening operation. Over the course of the year, the 'T' word had cropped up more and more. The admission in December seemed to be the final straw and it was decided that I would be out forward for transplant assessment.

Alongside these many hospital admissions, my diabetes was also not coming under control and in October 2014, the consultants reached the decision that gliclazide was doing nothing and so changed me to insulin. This was another scary hurdle. Despite having countless blood tests and procedures involving needles, I have a tendency to freak out about them a bit so the thought of actually injecting myself was a tricky one to come to terms with. I was persuaded by the fact that being on insulin would allow me a bit more freedom in my diet. After a few tears with the specialist nurse, I managed my first practise injection. Since then, it's been a bit up and down learning how to control my sugars and diet but now in August 2015, I'm starting to feel a bit more in control. 

One person in particular who has really helped me through this journey is my brother. As I mentioned earlier, he has never shown any resentment of the attention I received through the diagnosis period or since. A few years ago, he moved to the US to follow his dream of becoming a footballer. Part of his passion is for keeping a healthy mind and healthy body. He has helped me immensely by researching healthy eating and providing me with exceptional, in-depth advice about the sort of food I should be eating. He always makes sure this is backed up with research and tells me exactly why these foods are right for me. He also tries to keep me fit with advice for exercise regimes though sometimes he forgets that he's some kind of super-human exercise machine! 

The Super-Human, amazingly supportive 'little' brother :)


So here I am, keeping myself as well as I can whilst waiting for 'The Call' and hoping to share the rest of my journey with you. 


With my fabulous Mum in August 2014 

Thank you for getting this far and I hope my posts can be supportive, informative and entertaining

Keep Smiling :-)

2 comments:

  1. You sound like an amazing person. You didn't let your illness get in the way of your goals. I have a daughter who is 20 and she was also diagnosed at a very young age (14). When she had her first liver biopsy, they found scarring with cirrhosis. She also followed the standard protocol of Azathioprine and Prednisone. She had a very similar situation that you did with all the medications. For the first three years, she stayed in a chemical remission. For the past three years, we can't get her levels down. We were just told by her doctor that she will eventually need a transplant. I love your blog and I will look forward to following your posts. Sending you lots of hugs and prayers.

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  2. Thank you for your comment. I hope that you, your family and your daughter find this blog helpful. Please feel free to ask me any questions and I will do my best to answer. :)

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