Lack Of Advice from Unknowledable Doctors??!!

Hi All

If you are reading this, there is a chance, that like me you are doing as much research on this condition as possible. I do this because, I feel that the lack of knowledge form the Doctors that we have spoken to is scarily daunting!

I am the long term partner of 'a person who clots'! He chooses not to look at ANYTHING on the net to do with his illness as he is not too academic (being more of a practical person, in job and life) and feels that he would mis read articles and worry himslelf into depression!

I, on the other hand can handle stress quite well, and although not medically trained (which is a huge porblem), I am able to disipher/understand about 40% of the medical jargon that I have read.

My partner became extremely ill about 3 years ago, and although we begged the GP to refer us to specialists (his doctor said he was suffering form SADS and should try Yoga), he was eventually rushed into hospital, and then another hospital with what they eventually diagnosed as a blood clot in his Portal Vein (to his liver). He had a metal stent put in and was sent home after around 6 months in hospital. N.B Please note that this is EXTEMELY RARE

We were not given any info on clots and were just told that it was a sponanteous / one of clot.

Then Jan 07 (a few years later) aged 30, he was rushed into hospital again (this time our daughter was present during this stressful ordeal) and he was diagnosed with a PE in his lungs. Again his GP failed to diagnose this and even though looking back retropectively Richard had all the symptoms of a PE, his Gp told him he had asthma- and even though his condition deteriated over a 6 month period to the point where he couldn't even walk more than 10 steps without struggling for breath, his GP still did not diagnose -even with a recent history of clotting!

Since then, alhtough the doctors and specialists that we encounter(Richard attends regular Liver and lung clinics) are specialised in their own fields, none of them can tell Richard WHY he clots or what tests have been done to find out WHY.

His GP refuses to send him to a blood specialist as he says it is pointless because what ever the reason - it is irrelevant because Warfarin is the only therapy!

If you ask a dotor for advice on flying (richards parents live abroad) no one will give an informed answer and they all sit on the fence.

Richard has over the past week experienced sharp pains in his thighs and is reluctant to approach his GP, beacause he is made to feel as if he is a hyperchondriac.

We have never been told whether Richard had a DVT in his leg or thigh, they merely said when he had his PE that they never found the DVT but there must have been one somewhere!

I have done further research today and found that Post Thrombotic Syndrome can occur AFTER someone has suffered with a DVT. There are preventative measures which one can take to try to combat this i.e. FITTED compression stockings and elevating Leg at evenings (simple low cost measures). We were not told any of this, but in my opinion SHOULD have been.

Anyone who has suffered a DVT look this up and act accordingly - PREVENTION is the best medicine.

My bit of advice would be - DONt rely on Doctors to give you professional expert advice on this issue (unless you are seeing a GOOD blood specialist), do as much research as possible WITHOUT becoming TOO obsessed or depressed. Become your own specialist.

Reading an article from Lifeblood (a young UK charity dedicated to this condition), it has researched that NOT enough is know about blood clots by the professionals OR more frustrating what is know in preventative measures is nt IMPLEMENTED.

Good Luck Everyone

Stay positive - healthy mind and all that. There is always someone worse off (touch wood).

Kind Regards

Kelly

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