David - My blood clots story - An occluded inferior vena cava
My story is a long one, starting in 2000 and is still ongoing. It is also a complex one in that I’ve had a rare type of deep vein thrombosis, technically it’s called an occluded inferior vena cava
I’ve had a rare type of deep vein thrombosis
Practically this means I had a blockage the size of a small golfball in the main vein back to the heart just above my legs. On 12 February 2000 I was rushed into hospital as my leg had swollen to twice its normal size, after a while in I was put on heparin and kept in hospital for two weeks, but the story didn’t stop there. No one really seemed to know in the local hospital what was going on, they knew it was a deep vein thrombosis but no more. After two weeks I was discharged when I could demonstrate that I could walk, but walking was a bit of an exaggeration, as I could only stumble three steps because of the pain.
I could only stumble three steps because of the pain
Luckily my partner gave me a lot of support over the next few weeks and months. My workplace allowed me to take time off and I also had medical insurance through the organisation, what I wasn’t expecting is that I would be off work for an entire year, unable to walk any distance for the first two to three months. The first few weeks were excruciating, I was prescribed powerful painkillers from the start which certainly helped. I often say this is how I gave up smoking because once they put me on morphine I really didn’t need nicotine. I was also put on warfarin and had to attend the warfarin clinic on a weekly basis. I felt a little bit unusual as I was only 40 at the time and the majority of patients at the clinic were over 20 or 30 years older than me and average.
The early stage: what is going on?
At this early stage I was surprised by the lack of curiosity by the health care staff and the hospital, I noticed that I had external veins on my stomach and at the top of my legs, it later transpired that this was my body doing an internal rewiring and its own version of a bypass. In fact the veins had grown so large on the surface that it looked like a fairly detailed map of Ireland on my stomach. The analogy I thought of was it was like there had been an accident on the M6 and all the traffic had taken the small A roads and these had been widened and expanded to take the additional traffic. This is what was happening in my inferior vena cava, without any medical intervention my body widened the secondary veins and bypassed the blockage.
I was readmitted to hospital briefly to check out the new veins but there was little that the staff could do so I was sent home again. By the spring I was still in great pain and I went to see an osteopath that I had been to quite regularly for the previous couple of years. He had suspected that there was a DVT and indeed a blockage in the inferior vena cava.
I definitely believe he saved my life at this stage as he was able to give me very sound advice to get the condition fully checked out, he told me to go to my GP and explain what he thought was happening.
Diagnosis: "You would be dead if that was the case"
When I went to the GP my suspicions that the medical profession weren’t really very familiar with complex DVT conditions was definitely confirmed. I told my GP about the osteopath suspicions about the inferior vena cava and she said "don't be ridiculous if you had that you'd be dead."
Later when it was definitely confirmed that I had a blockage I just concluded that probably I had been dead for a while and just not noticed!
I kept going, trying to get some explanation for what was really happening
Towards a sustainable solution
I kept going, trying to get some explanation for what was really happening because this really did not feel like a common or garden DVT. I used the medical insurance for my work and eventually after a few months saw a consultant who tried to put a catheter into my heart to see what was going on. It was at this point they recognised that they couldn’t get the camera into the heart because of the blockage. I was then referred to Prof Kevin Bernand at St Thomas's and Guys. He has since retired but he was the second person who I believe contributed to extending my life substantially.
Prof Bernand did three things:
- Scan He arranged for a full scan, normal bodies look like trees in the arrangement of the venous system, mine looked like a particularly messy plate of spaghetti. It was obvious from this that no surgery could help as to quote the Prof “the first decent vein you have got is in your big toe”, therefore no bypass would be possible. However the upside was that no clot could get past the blockage, as the professor said again “it’s as though somebody has tied a knot in the vein and this keeps you safe.”
- Compression he gave me a prescription for class II compression stockings and advice on which were the best providers. For the last 22 years I’ve been wearing Mediven class two below the knees compression. This compensates for the damage to the valves in my legs and also provides greater pressure for getting the blood out of my legs. On the NHS I could only get UK manufactured compression, which at the time only came in the colour “beige” and not class two. I have not had oedema, ulcers or other problems with my feet except the ongoing discolouration. I cannot prove that the compression has been responsible for this but what I can say is having worn compression diligently I do not have the problems commonly associated with major DVTs
- Hernia operation Unfortunately I also got a hernia around this time in my stomach, the professor performed an operation because he did not want anyone else going into that area as my physiology was anything but normal. This has been successful.
The medium-term
By the summer of 2000 I was well enough to walk half a mile, I thought therefore I should be going back to work, this was a very bad move. By the time I actually got into London and sat at my desk I was exhausted.
I spent the year exercising and re-building my strength
I actually thought that people thought I was being lazy because I was leaving early to get home and only working two days a week. In fact several months later I met someone who had seen me get on a bus going home and I thought they were going to be critical of me, but in fact he said “you looked so terrible I told all my colleagues that that was the last we would ever see of you”. It was at this point my wife rang my manager and my manager told me to go home and come back when I could. He arranged for cover and I was off for the remainder of the year returning to work in March 2001.
I spent the year exercising and re-building my strength. I went to the gym, swam and rested.
The next 20 Years
Since then I have worked for a further 20+ years, led teams and projects across Europe, started my own business, travelled widely, including to the USA, Vietnam and the Caribbean. I got married in 2002 and have recently retired.
As far as ongoing supervision of my condition, there has been very little. I stopped the warfarin after a few months once the consultant was satisfied my condition was not going to return. Apart from the compression there has been no medical intervention in the 20 years since. However I did about 10 years ago go and see a consultant who was very keen for his juniors to come and have a look at me because to quote “they probably wouldn’t see another one like this”. The conclusion was no medical intervention was possible.
However in 2016 I was diagnosed with atrial fibrillation so again I am now on blood thinners. I’ve had several blood tests and I’m pretty sure that I have not got any of the proteins that are normally associated with DVTs.
The future
I still struggle with walking uphill, I also get very tired very quickly, I can manage about an hour’s walking on the flat but will then have to stop and have a rest to recover. The one thing I really cannot do is stand up for any length of time, this restricts me in some of the events I can attend as I definitely need to sit, I avoid crowded trains, standing only events and anything that involves stairs in large numbers.
Apart from that I have maintained my health. I must admit I am actually quite amazed that 23 years on, at the age of 65, that I am:
a) still alive
b) still have my mobility
c) relatively healthy and able to live a full life and travel.
Conclusion
I'm still not convinced that the medical profession have a full understanding of the impact of these “rarer” types of blood clot. Looking at the literature I’m always disappointed by the lack of exposure given to the importance of compression, for myself this has been the game changer, although I acknowledge it may not be a universal solution that everyone.
It is a bit lonely, I have never met anyone else with this condition
It is a bit lonely, I have never met anyone else with this condition, I cannot find any statistics about mortality rates or prognoses or life expectancy. As I said at the start there has been very little curiosity shown about the nature of this condition. One interesting thing that I believe is happening is that the blockage has opened up to some extent, this may be due to carpal tunnelling. I only say this because I’ve noticed over time I have been able to walk further and quicker. It would be interesting to know what state my blood flow is in currently, and what I should expect to happen in the future based on other case studies.
I have given up explaining the condition because no-one gets it, but I often wonder what is actually happening. Have there been any medical advances? What would a scan show now?
Thank you for listening/reading my account, I hope you find it thought-provoking, entertaining, and interesting enough to encourage further research and support for people with conditions that fall just outside the normal.
David
by Andrew Kennedy
