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exemption by virtue of potentially fatal condition

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13 years 4 months ago #34236 by Callisto
Hi Dave
Yes i have seen The ST Thomas,s team, they were nice but to no avail.
Have been on anticoags for some time now, at 45 i am not that likely to even conceive now so time is running out for me. Just have to keep on going.
Callisto

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  • originaldave
13 years 4 months ago #34247 by originaldave
Callisto wrote:

Hi Dave
Yes i have seen The ST Thomas,s team, they were nice but to no avail.
Have been on anticoags for some time now, at 45 i am not that likely to even conceive now so time is running out for me. Just have to keep on going.
Callisto


thats a shame :( what are you using to stop clots ? plavix ? clexane ? hope its not warfin .... did you see the wall full of pictures of babies ?

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  • sludgeblood
  • Topic Author
13 years 4 months ago #34250 by sludgeblood
Thanks for answers so far - even though not quite the assurance I was looking for.
It might be helpful to correct a few assumptions. Whilst it is mostly women who suffer from Hughes (APS), there are a few of us men who do too. I was diagnosed with the condition when it had another name, before Prof Hughes had his name put to it. Warfarin/Coumadin does help but it is not a cure and nor is it guaranteed to stop clotting. I've had strokes and TIA's, and PEs, whilst being on warfarin. I am engaged in a balancing act all the time trying to avoid situations that might lead t more clots. Whilst men are spared the dreadful miscarriage problems women may suffer, there are also many other effects which can be an issue that greatly affect quality of life and one's ability to work eg joint pain and something other sufferers will recognise which we call brain fog. As Prof Hughes has said, the condition can cause problems wherever there is blood in the body. That's why my repeat script sheets runs to three full pages of various drugs.
I am under St Thoms, and Prof Hughes, and others - but all this talk of challenges to those of us on ICB or whatever just completely drains me.
Pse excuse the ramble.
Many Thanks

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  • originaldave
13 years 4 months ago #34258 by originaldave
sludgeblood wrote:

Thanks for answers so far - even though not quite the assurance I was looking for.
It might be helpful to correct a few assumptions. Whilst it is mostly women who suffer from Hughes (APS), there are a few of us men who do too. I was diagnosed with the condition when it had another name, before Prof Hughes had his name put to it. Warfarin/Coumadin does help but it is not a cure and nor is it guaranteed to stop clotting. I've had strokes and TIA's, and PEs, whilst being on warfarin. I am engaged in a balancing act all the time trying to avoid situations that might lead t more clots. Whilst men are spared the dreadful miscarriage problems women may suffer, there are also many other effects which can be an issue that greatly affect quality of life and one's ability to work eg joint pain and something other sufferers will recognise which we call brain fog. As Prof Hughes has said, the condition can cause problems wherever there is blood in the body. That's why my repeat script sheets runs to three full pages of various drugs.
I am under St Thoms, and Prof Hughes, and others - but all this talk of challenges to those of us on ICB or whatever just completely drains me.
Pse excuse the ramble.
Many Thanks



its no ramble and spot on nine times more women have the problem than men

the symptoms you have make me think your inr is not stable... how often do you get it checked ?and if its not have you thought of asking for them to try something else ? like clexane?

ps know both the prof and his buddy dr cruze ;)

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  • Taffy
13 years 4 months ago #34262 by Taffy
I dont think you will find that APS allows you to claim exemption. Yes in its full blown capacity, you can have a fatal stroke but they argue that with the daily dose of plavix, warfarin or heparin, you will remain stable.
This isnt entirely true - I have pre Leaukemia - a Blasting of the Red cells in the Marrow,[ Jak2 gene] one side effect is CLOTS,, ive been hospitalised for many- having done the round of Calf, Lungs, then small Bowel[ caused removal] to the POINT- Ive been on warphrine for may yrs and still managed to gain a Clot with My INR in access of 2.5 ..Heparin was used in all my ops to stabalisze the Blood- and HERES the PUNCH line- on one Op ,the heperin TURNED toatlly against the Platlets , detroying them, leaving me to bleed to death on the Operating Table - it was touch and go for weeks after-

Want Im saying is what works in the Body today , will and can go AWOL as when it chooses... Im no longer able to take Morphine, tramadol, andy codiene based Drugs DUE to the same Problem - speaking of which Ive another op next week to remove more clots hanging from the Liver[ symptom of the Blood condition] - so those who believe in a Higher Diety- your prayers are welcome-

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  • Taffy
13 years 4 months ago #34263 by Taffy
ps not are you only prone to clots, but clots cause strokes, aneurisms[sp] , heart attacks , I mpathise somewhat WITH the OP[ Orignal Poster ]

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