Sticky Blood-Hughes Syndrome Support

good reason to follow your paper work ????????????????

i just went thru the hole problem of believing in my docs , actually that has not changed, at least not to much , my problem is that they dont talk to much at all, not with each other, i found a major problem with my doc s------------ this going to be a major problem with my appt. tomorrow,???????? just when you think you are all set you find your not ????????????????? gruuuuuuur- o well tha ts life in our world -------------------- happy ---me--

7 Replies

Hi jet

I think we all understand your frustration hon. Docs and their egos, grrrrr!!!

I hope tomorrow goes ok, more explaining everything again!!!

Gentle hugs love sheena xxxxxxxx :-) :-) :-)


Yes, I too can relate. My TIAs and mini-stroke continued for an additional 3 months due to unshared lab results. Good luck and let us know.


o well went to see surgeon yesterday- many x-rays and tests, progressive a.v.n. in right fermal,i was told there was a 70 % chance they may not operate on me because of my many blood problems.if he sees any sign of colapse in bone its off for ever, conditions set are , 1 st i need a hemo on board [ he has one he likes to use }2 nd dc Chou has to be in agreement, he wants to install a filter in groin area in vein called big blue- temporary or permanant ?? he isnt sure yet.and of course all dc s notes not complete or correct[ that doesnt surprise me] it almost got trashed when he found out about the latest dia. severe obstuctive sleep apnea. i tryed to get him to go by my records and he just kept on with his comp.finally he took my notes to finish appt.-- wow that was close.risk factor very high, thats why now or never ,the progression is alot faster than they expected the aps and other blood problems now to blame.gotta get going on this ,e-mailed Chous office last nite ,this is where it has to start. any help or concerns from you guys would be great, as i dont know ??? thanks ----jet


So sorry to hear about your results :( you know where I am if you want to talk, keep possitive bud.....Suzypawz


Sorry to read that you are experiencing added problems with something that is one of my biggest moans, namely the lack of a Hughes aware doctor overseeing, and taking responsibility for the information etc coming on to our files from several different clinical departments. I was very luck for many years when I lived near Oxford, in having one very nice and exceedingly competent consultant and he ably interpreted the input from the various other specialist he sent me to see.

Now, in another part of the country, I have seen over ten consultants in almost as many departments in the last few years, plus St Thoms and Prof H, but nobody seems to bother reading what others have said - and as we all know, Hughes cannot be treated in isolation. My GP, who is on a steep learning curve about Hughes, is very helpful but I think there is a case for some people having a hospital consultant with overall responsibility. I hope that you get over all the obstacles added to your concerns.


thanks for the support , its alot off work, just to feel so miserable sometimes, it makes you wonder some times if its worth it. thanks again --- jet


It's well worth it matey,I like your sense of humour, keep you chin up....or else I'll have to hitch hike, swim, hitch hike again & probably have to get the broom out for a little flight get to yours & kick you up the bum with my goth boots!!! : )

thinking of you, dont get down :( or we will too, Suez :)


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