From a young age Darren experienced blood clots, wishing more was known about the cause, his account tells of his struggle and of the immense impact blood clots have had on his life.
My name is Darren and I am a 43 year old man with a long history of DVT’s from my feet to my stomach and back and I will try to put my story into words for the first time.
I was a normal 12 year old boy who loved being part of a military family with high hopes of joining up myself.
I loved being outdoors and going camping regularly and I would have considered myself to be quite fit despite my love of food. My troubles started when I woke up with a very intense pain in the bottom of my spine that caused great pain and discomfort to walk but I continued to try. I was told after a phone consultation that I had sciatica and I was to lay down and avoid movement as much as possible. It was the early 90’s so treatments and attitudes were different. I did as I was told for about a week and moved from the couch to my bed on Wednesday night. When I woke up on Thursday I was able to sit upright with a lot less pain and thought I was almost sorted but when I stood up and tried to walk I was unable to and fell to the ground. I looked at my right leg and it was 4 times the size of my left leg and very purple. I was carried to the back of a van and lay there freaking out, going to the doctors, with the thought that I was going to have my leg cut off which the conversations that 4 GP’s and a surgical registrar were having didn’t help.
After I had been in the hospital for hours and had every blood test and scan possible, I was diagnosed with a very large blood clot in my right thigh and the remnants of 4 clots in the base of my spine. I spent the next year getting blood clot after blood clot and no one could figure out why it was happening even though I was full of Heparin. I was given Warfarin to thin my blood when I wasn’t in hospital, but the Hematologists couldn’t get it to stabilize and I continued to have repeated clots. I was then sent to Professor Ludlum at the Edinburgh Royal Infirmary where I went through a barrage of blood tests, scans and poking and prodding from what felt like every doctor in the hospital every day for over a month.
I remember feeling like I was the only teenager in the world who suffered from DVT’s because the youngest person on my ward after me was in his late 40’s and the majority of patients were in their 50’s to 80’s but I tried to fill my time helping the nurses where I could and doing shop runs in my wheelchair for the other patients.
It took almost 4 years before I was diagnosed with a protein C&S deficiency but still no one could tell me why I was having so many clots and why my Warfarin wouldn’t stabilize. Despite all the problems I was having I still had the dream of joining the armed forces so I went to the Army Recruitment Office and was told that my dream wouldn’t and couldn’t happen due to the anticoagulants and the seriousness of my condition. At that point I went into deep depression and turned away from the, to me, pointless treatment and hospital visits. Due to my excruciating pain 24 hours a day I was on a cocktail of opioid pain relief, and I started drinking very regularly, yes I was 16 and very independent, which in hindsight wasn’t my best decision but in my depressed head I couldn’t be doing myself any more harm than my body was already doing. I started only going to the hospital and reporting my many regular clots when I thought it was serious enough.
In my mid 20’s and after years of regular blood clots, blood tests every day for periods of time and somewhat regular and long hospital stays I started to develop Venous Leg Ulcers on both my legs on my shin area which caused my legs to split with the pressure from my Compression Stockings and I started many different treatments to try and stop the ulcers from getting worse i.e compression bandaging which caused me even more pain and then non-compression bandaging and an assortment of creams and lotions that haven’t helped. By this time I was in a wheelchair anytime I had to walk as the pain was so unbearable and the cocktail of pain relief wasn’t very effective and I had many meetings with many doctors with the view of a double above thigh amputation but I had to fight against that as I was very worried about where my still regular blood clots would develop and justifiably so. At this point I threw myself into a college course to successfully get the qualifications I had missed in my younger years due to not attending school or sitting exams. I then somehow managed to get my HNC in computing and started my HND but 6 months in I ended up in hospital for 6 months due to blood clots in my groin which meant I was even unable to sit and propel my wheelchair. By this point Professor Ludlum had retired and I had to tell every doctor or Hematologist my story at every single appointment purely because I had to see so many new and different doctors and I started to slip back into my deep depression and stopped all my treatment again, yet another bad decision.
Now in my mid 30’s I am heavily addicted to my very strong pain relief and plodding through each blood clot and Venous Leg Ulcers that now go from my ankles to below my calf muscles on both legs. I have now started to develop regular bouts of Cellulitis in my legs, groin, back and stomach. I have managed to get out of my wheelchair after 3 years of hard work and excruciating pain because I was told that it would help my ulcers and Cellulitis but alas it hasn’t.
I then started to feel a very familiar pain in my stomach area but was constantly told it was impossible to have blood clots in my stomach but I insisted I was sent for an Ultrasound scan and It turned out I had 6 clots in my stomach, just my luck to get the impossible and no one could tell me why until a GP visit to yet another new doctor quite a few months latter. She started to tell me how she found it really interesting that I had no Inferior Vena Cava (IVC) which in her opinion would explain why I had blood vessels large enough in my stomach to support blood clots. I am yet to get proper confirmation if this is the reason but I do know that the body creates new blood vessels to either replace broken or blocked vessels or to get around the blockages (Angiogenesis).
I am now in my 40’s and I have been clean from any and all Morphin pain relief for 61/2 to 7 years and all I take is Dihydrocodeine which is useless and life is very hard. I now have ulcers all the way around both my lower legs which are bandaged 24/7 and I now change them myself or with the help of my misses. I made a very hard decision years ago to not have any biological children of my own due to the fear of passing my condition onto the next generation. Now my life consists of laying in bed if I’m not driving my family to places or appointments or if I’m lucky I can sit on the couch.
I battle pain and depression every day and I am at a loss as to what to do next. I feel that someone somewhere in the NHS should have an interest in learning from my 30+ years of experience to help others hopefully not have to go through what I’ve been through but all I seem to do is explain my condition and get told there’s nothing that can be done which drives me crazy.
The biggest piece of information I can give to new blood clot patients is to move and push through the pain to get mobile again.
Being told to not move 30+ years ago was the worst advice I was given although I now understand that no one could have guessed what road my health was going to take. There was no family connection to blood clots until 19 years after my first 4 clots when my mum started to have them in her legs and one in her brain, thankfully with no major side effects. I have a cousin around my age on my dad’s side who has blood clots in her arms and my dad had one after a motorbike accident in his younger days and he had a stroke during a knee replacement operation which ultimately caused him to pass away. In my mind the clotting condition being passed from both parents’ sides is perhaps why my condition is as bad as it is and it has hopefully ended, in my family, with me as my sister has never had a clot and she is 5 years older than me.
It has now got to the point where it’s pointless going for a scan when I have a blood clot because they can’t tell what’s old and what’s new. If I was to guess I would say I’ve had well over 100 clots in my legs, groin, back and stomach in my 30+ years and all I want out off this is, to the best of my ability, to help others and I have always said that I would go to any appointment or scans to make this happen but I have never been asked.
I hope in the future that any doctor in the world will give good advice to any patient from all walks of life and all blood clots can be dissolved quicker with less long-term side effects.