Carl is fundraising

Welshpool 10K for The ITP Support Association

£230.00 + £38.75 Gift Aid = £268.75
Donated to Carl’s £150.00 Goal
7
Sponsors

Carl’s story

I am running the Welshpool 10K run and here’s why…


Just when you thought that you were invincible. 


It’s the first bank holiday weekend of the year, the official start of the summer for most DJs especially those here in the UK. I was all set for four gigs over three days which included a celebrity wedding and performing after a highly regarded House music DJ only for the four to be cut down to two as I began to feel unwell during Friday’s events. 


During the first two events I noticed that my mouth was filling with blood blisters and I just wasn’t thinking straight.  Me being me, I initially thought that the blisters in my mouth were ulcers and that maybe I was just coming down with something, so I continued to perform at the events and then headed to my hotel to rest. 


After three to four hours sleep I woke to find that the blood blisters had got worse, literally bursting left, right and centre. I had also developed a rash on my forearms and lower legs (Petechiae) that I thought I could wash away in the shower! I immediately called my wife Angharad who suggested that I called for an ambulance, which would then lead to me being taken to the nearest hospital, Warrington. 


Initially I was treated for potentially having meningitis, which is scary enough! Several hours later I would be informed that this wasn’t the case, in fact I had somehow kick started a condition called immune thrombocytopenic purpura, otherwise known as ITP. 


In short, ITP is a bleeding disorder in which the immune system destroys platelets. Platelets are necessary for normal blood clotting, assisting in healing cuts and so much more. This rare condition affects around three to four thousand people here in the UK and when diagnosed as an adult it is highly likely to be chronic. So far no cure has been found however there are several treatments that can help those suffering enter remission for months, if not many years. No one knows why this condition exists or why it can be triggered to affect your immune system. 


The average human has a platelet count of 150 – 400, when I was initially diagnosed at the hospital I had a count of 2. Within the space of two days I had a count of 0! Any external or internal bleeding could’ve literally killed me there on the spot. 


As it was the bank holiday weekend and as the hospital didn’t have a haematology ward there was a lot of confusion between the doctors and nurses on the various wards I was situated until a haematologist from another hospital began to advise them on the next steps. Initially I was put onto a corticosteroid treatment, prednisone, combined with an IVIG, intravenous immunoglobulin. After five days in the hospital I finally got to meet a haematologist who advised that my platelet count had improved, climbing to 18 and that he was happy for me to return home and seek advice from a haematologist local to where I live thereafter, who was based at Shrewsbury.


So I was at home, on steroids and wondering what had happened to me, what had I done to allow my body to do this to me, what could I have done to prevent this? 


None of the answers were coming to me and in fact I worked myself into such a huge frenzy that I suffered with the worse headache I’ve ever had in my life, I wouldn’t even wish it on my own worse enemy, I don’t think I have an enemy anyway, but still it was ridiculously painful and trying to hold back the tears made it worse. 


I returned to hospital as advised by my GP and we would discover that my platelets had dropped again to a count of 6. Under new haematology advice I was placed on a higher dosage and a stronger steroid, dexamethasone, combined with another IVIG transfusion.


I would then remain in Shrewsbury hospital for just over a week where my platelet count would improve and I was allowed to leave with a count of 89, the highest since my initial admission. I was so relieved, yes the number was far from the average but it had climbed to a count higher than what was considered too dangerous to even operate on someone. 


So I returned home, happy that my platelet count had improved however I wasn’t fully happy. The side effects of the treatment actually messed up my body. I could barely walk. My muscle memory had almost disappeared. The other thing that they forget to tell you about being on steroids is that you are hungry 99.99% of the day.  I was literally making myself a meal every hour, not healthy food either, endless amounts of chocolate, crisps, sweets, bacon, portion sizes bigger than my stomach, I piled on near on three stone in a few weeks, pushing my weight up from thirteen to sixteen stone. I also couldn’t sleep very well, I was wide awake every morning between three and four, just wanting to go down to the kitchen to smash a bowl of cereal followed by toast, then some French delicacy and then the piece de resistance a full on English breakfast, every day. 


Mentally, I wasn’t in the right place. I had mood swings I never even knew I could have and I didn’t want to leave the house. I felt like everyone was looking at me. My first real day of full interaction was at my community’s yearly carnival and although everyone involved put on a fantastic day and everyone I met were incredibly supportive I just didn’t want to be there. However, it was so important that I was, this was when things would turn around for me.   


Whilst in hospital, my parents suggested that they got me an exercise bike for my birthday, which I was lucky enough to spend at home with my family. So, a week or so later there I was, at home alone with an exercise bike. 


Now, over the past 15 years since leaving home and moving to London to pursue my career in the music industry I had never, ever taken exercise seriously. Yes, there were a few gym memberships where the only person benefitting from it were the shareholders and I tried so hard to get back into football but because of my travelling across the world at weekends it was difficult to commit. 


Please consider that now, after being diagnosed with ITP, I was advised that I could no longer play full contact sport. That’s a hard thing to take, even if I wasn’t participating at a decent level, I still couldn’t play 5-a-side!


So I finally get on the exercise bike and I start peddling away. Two minutes into it and my legs are shaking and I couldn’t do any more. The steroid treatment had really taken its toll on my body. I could’ve just given up then and there, I felt like this was my life, I was going to feel like this forever. 


I remember I tried again the next day, I think I recall that I was on it for at least 5 minutes, suddenly with this improvement I felt a positive mind-set install itself in my brain and after further conversations with my haematologist we decided it would be best for me to start weaning myself off the steroids, I wasn’t myself, I didn’t want to be unhappy, miserable or a couch potato. 


It would later turn out that the steroids weren’t doing anything to help me anyway. More treatment options were then exercised. 


I started a new treatment. This time I was to receive an IV infusion of Rituximab, a treatment that is usually given to cancer patients alongside chemotherapy. This process would involve a weekly treatment session that lasted 6 hours over four weeks.


After the first week my platelet count had not improved and my haematologist started to mention the other potential treatments that I should consider. Within these treatments included the option to remove my spleen. 


It was at this point that I decided that I wasn’t going to let anyone remove any part of my body unless I was knocking on deaths door.


I wasn’t to have any further blood tests for another four weeks after the final Rituximab IV infusion. During this time I focussed on eating better and I continued to ride my exercise bike, clocking up over 250 kilometres with my legs feeling a lot stronger along the way, which helped! 


So four weeks passed and it was the day of the blood test. I was incredibly nervous, I think I went to the toilet at least three times in between having the blood drained from my vein and seeing my consultant! 


The results were very, very positive. My platelet count had risen to 132! That’s just 18 under the average count. Both my consultant and I were really encouraged by this and I am now waiting in anticipation for my next platelet count, which will be on Friday the 27thof September, a special date as it falls during Global ITP Awareness Week.


I don’t just think that it has been a focus on the fitness and diet side of things that has assisted in a higher platelet count. I 100% believe that although they definitely contributed towards it, a happy state of mind has been essential. I’ve cut back on things that caused unnecessary stress and introduced things into my life that I want to do.


I’m now coaching junior football twice a week at Llanfair United and Newtown Academy, I’ve already gained my Football Association of Wales Junior Leaders award and I’m about to undertake my C certificate.


I’m back in the gym, eating as clean as possible, the odd cake here and there isn’t going to hurt too much and I’m spending more time with my family who more than deserve it. 


My family have been amazing, my wife has been incredibly patient and my two sons have brought so much happiness into our lives. Our extended family and friends have been there for us and we will be forever grateful for their help and love. 


I’ve got a long way to go but I think I’ve established that if I’m happy, fit and healthy then I’ll be more useful to everyone around me!


Who knows, perhaps I’ll be above average and the haematologist will tell me that I can play contact sports again. I know that I am going to own that pitch during my first 5-a-side game back! 


So, this is why I am running the Welshpool 10K. I’m doing it to raise funds for the ITP Support Association who dedicate their time to promote and improve the general welfare of patients and their families by providing information, feedback from medical seminars, a listening ear and so much more. 


Thank you so much for reading my story. I know that it was a long one but as you’ve got this far I would really appreciate your sponsorship, no matter how small or large.


Thank-you!

Carl x


All funds raised will be passed to the charity irrespective of whether my target is reached, not reached or exceeded.


Updates


The ITP Support Association

The ITP Support Association is the sole UK registered charity supporting and representing the interests of patients, and the families of patients, with Immune Thrombocytopenia (formerly known as Idiopathic Thrombocytopenic Purpura), and funding research into the causes and best management of ITP.

The ITP Support Association was formed in 1995 to provide information and a support network for adults, and parents of children, with ITP.


Immune Thrombocytopenia is a frightening rare bleeding disorder in which the body’s immune system destroys platelets in the blood. Unlike autoimmune diseases such as rheumatoid arthritis and MS it is not progressive as the risk of bleeding exists from the day the disease develops. It can arise in anyone at any age, and affects three to four thousand adults and children in the UK. Its symptoms vary from one sufferer to another but include nose bleeds, mouth blisters, heavy periods, large multi colour bruises, petechiae, fatigue and, on rare occasions, internal bleeding. Treatments, which all have their dangers and drawbacks, are not always effective in raising the platelet count, and only rarely cure the disease.

Registered Charity Number: 1064480.

Find out more about The ITP Support Association

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