Last week, I had some bleeding, really unexpected, as gone through the menopause and out the other side or so I thought - well based on me taking warfarin and my INR was 3.9 I had to go to the hospital to get checked - the doctor there has said, there was a tablet/injection (sorry already forgot which) which would stop the blood flow to my uterus - and yes it was safe with warfarin - we went through my medical history and I was surprised he said he knew about APS so I thought "result" this doesn't happen often. Anyhow, he decided to scan me first and take it from there, as and my INR had gone down from the previous day to 2.4 for me to go to my GP for referral to Gyny - jeepers sorry hope this makes sense! - anyhow went to my GP as bleeding was getting worse, I told her about the drug the hospital was going to give me, she said she just wanted to check it would be ok - yes she said it's fine with warfarin, on no no no she said, you didn't have this med did you? I told her no, she said thank goodness, you cannot take it with APS!!
How are we patients ever going to get well if doctors cannot get it right, and who is to say, we are not better as we may of been given wrong drugs in the past! And worse still how to work out who is right and who is wrong, and they all seem to know what they are talking about right?
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Lesley_D
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You have to be in control of your own health you may know more than your Doctor get as much Info as you can I know it's not good enough but many years ago Illnesses like Post Viral Syndrome M.S and Post Traumatic Stress Disorder were Imagined all in the mind we have come a long way Good Luck x
I am sorry to hear what you are going through!! This is the biggest issue with APS and this is why APS is so important, i went to a Hospital where the doc told me i could not have APS its a womans diesease!!
I think this is not going to be won on the short term but with awarness and training and the campaign work we and HSF and other charities do this will change the only thing i do is if they want me to take anew med i check the lable and if says do not take with blood thinners or heart etc i call the APS nurse at St Thoms and ask them to check with consultant it would be ok?
sprry it is not a clear answer but hang on in there
I had something simular, they took me off warfin & gave me Lovenox, 3 shots a day until everything was where they could do surgery. I was losing so much blood they were weighting it. They would change my tucks and while doing so another amount of blood would just all of a sudden spirt out. While I was on Lovenox I was off warfin. The day of surgery they just didn't give me the Lovenox. Happy to say it worked out fine. Of course I went into menopause immediately, and the hysterectomy was a new kind where they put very warm water in your uterus and then they did a laproscopy for removal of tubes & ovaries. But the whole time I was in the hospital (11days) I was always talking to the doctors because they aren't as informed as we patients are. It takes lots of reading, etc!!!!!!!
Good luck to you and fight for what you believe!!!!!!!
amen- you have to stay on top of your game- you cant rely on espeacially, new doc s , at least till they gain your trust, and respect .thats why on Paddys blog on getting and studying your records and info is so very important . the big plus for me anyways was piece of mind . i was sure and confident on just what was going on. also you were exactly rite in getting another opinion.sorry you had to go thru what you did. a couple of times when i was addmitted to the E.R,.the doc s tried to give me ibuprofen . which to me is a hugh mistake. i refused to take it or anything else for that matter till he contacted my nurse Kelly or my dr. Mmcall. he informed me HE WAS A DOCTER . i told him come back after he spoke to one of them !!! he came back after about 10 min. and said he had done it . and apologized. but!! i still would not take a thing till i got on my cell phone rite in front of him and called Kelly. poor Kelly said -this is the first time in my life i had a docter call me for an approval ?? o well you do what it takes in my book.-------------- the problem patient.-------jet
well its nearly 12 hours later and still not heard from the Haematology dept at hospital, was reassured that I was going to get a phone call soon (have been trying since 3pm) for result of INR, went for bloods for 8am this morning. Excuses - Drs are busy, I explained to the nurse, that I was getting nose bleeds and blood spots in mouth, this morning, but still no comeback, gave home and mobile and have been on edge since. I am going to take a smaller dose and ring them at 8 tomorrow if they do not ring. This really annoys me, there is no plan and despite the consultants saying they will get a plan etc. Thank goodness for St Thomas hospital. With all the problems with APS I am one step ahead now and since being referred to St Thomas am getting confident in speaking up. Infact I am going to contact the consultant and say my peace about how the staff are here.
This is the trouble, no one looks at the files I have and I have to repeat everything.
Daisy do you still go to St T's? I am going for the first time on 5 April after hopeless treatment locally. I was told though that St T's are now seeing patients only once and then referring them back to their local rheumatology department - heaven help me! Has this been your experience?
On the subject of doctors, I persuaded my friend to have the lupus anticoagulant test and the anti cardiolipin test done. Her doctor told her that she would do them for her but this wasn't routine as the doctors are discouraged from doing non standard tests and they can't understand them anyway!
Schadenfreunde. I had always assumed (hoped?) that Hughes patients on your side of the pond fared a lot better in the physician lottery then us Yanks . Apparently not. Sympathies. (You know we're all a bunch of hysterical females -- and the occasional male -- don't you? )
Just yesterday the NY Times magazine had a medical mystery piece on a poor guy who had excruciating abdominal pain. Multiple ER visits and a hospitalization later he went back to the hospital, still with no diagnosis. Turns out he had porphyria -- on his first hospital visit the test was run but he had been discharged before the results came back. He was diagnosed because his (new) doctor insisted on reading the whole chart! (Imagine that!)
I wonder if more men don't get diagnosed, because the ladies have the miscarriages? If we have more than 2 it is checked, but! the guys don't have this, so often get missed?!
KJay I live in kent but was referred to St Thomas' for other health problems which led to my being diagnosed with APSand am seen every three months by haematology. I think if you are more confident with St Thomas' you can ask to have all your appointments with them. I have all my hospital appointments there as I have absolutely no confidence in Medway for anything. The staff at St. Thomas' are lovely and if nothing else they are very thorough in their investigations
Many thanks for the replies Lesley and Alison. I will take your advice Alison and ask if I can have all my appointments at St Thomas'. I too have absolutely no confidence in Gloucester Royal either and would just end up at square one again if I was referred back there. I'll keep my fingers crossed!
I have been referred to St T's and got another appointment for 6 months. I know that some departments under Rheumatology at Guys have started a system where you only see a Consultant once after you have been referred and then get sent back to your GP. If you need to go back then you need to be re-referred.
In my case I know that the drug I am on, the GP has said has to be managed under the care of a Hospital Clinic. This may be why I get continuing care. This may also be a PCT funding issue - what they are prepared to pay etc. Perhaps its worth asking your GP when you are referred if it going to be a once only or a continuous care referral.
Sadly diagnosis and treatment, knowledge by docs has a long way to go.
I had 8 miscarriages, years of fertility treatments a dvt and pulmonary embolism and still local hospitals really got no idea, I lucky a Gp listened when i asked to be tested for Hughes.
Still at local hospitals I mention Hughes/Aps and they look at me like I've grown another head. Some have heard of lupus, though even then knowledge is scanty.
Like Lynn one of the meds I take my Gp will not manage, so on shared care with St T's. Thankfully!!
I hope one day, soon! It will get easier, so others have an easier path.
I guess every day needs to be an 'educate a doctor day'!!! (badges n tee-shirts maybe)???? Working on it!!! Lol....
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How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
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