Fragmin and warfarin : I have calmed... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Fragmin and warfarin

judes
judes

I have calmed down enough to write this post, took me a couple of hours.

I’m currently in hosp with nasty pneumonia not for the first time this year, my heart and lungs are knackered and are on their last legs certainly living on borrowed time now, docs are somewhat surprised I’m still here. I have told everyone I will live to be 100 just to annoy everyone.

My INR has dropped to 2.5 then 2.1 then 2 like a lot of others when my INR drops below 3 it’s the joy of Fragmin til it gets back to 3 or thereabouts. Like many it’s taken a long time to get primary doctors to understand this, one would have thought hosp consultants would know better.

Do they heck as like I was told that you can’t have warfarin and Fragmin together, I was so cross I just sat their with my mouth open, and off the docs went.

Once I realised just what had been said I was furious I’m sure steam was coming out of my ears.

I raised an incident form within the ward, the nurses completely agreed with me, sent an email to management and tomorrow will contact the warfarin nurses.

This sort of behaviour is unacceptable and putting our lives at risk of clots and death. I may not have long but certainly don’t want it shortened by some dickhead of a doc. My sons favourite word is dickhead, he’s 24 and should know better but in this case I think he’s right.

If dont get anywhere I will certainly go to the press I’m that cross.

Love and hugs to all stay safe stay well

J

16 Replies
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So sorry this is happening i wish you the best🙏🏼

KellyInTexas
KellyInTexasAdministrator

And they call themselves Doctors?!

I’m honestly shocked.

Very sorry you are feeling rotten ( and have lungs to match.)

Feel better soon- drink extra right now to help that blood and thin mucus ...

Please keep us updated.

So sorry to hear, best wishes!

I do understand when they dont specialise in the conditions we have but they seek specialist help rather than point blank refuse.If he is a specialist he should know better.Hope someone makes sense of this soon for you and you get comfortable and on the mend

Hi Judes,

As I read a little from earlier days here I understand that you do not have a Specialist for your APS also you did not know who was responsible for your Warfarin-treatment. But you said you did selftest.

You do need a Specialist who will take care of your different symptoms and if you have Parkinson (?) and lung-issues you should hav an Echocardiogrphy with doppler.

I guess you have now stopped smoking. Do you have high bloodpressure as that goes sometimes with lung/heart-issues in APS in rare cases.

Fight to get a Specialist!! We must do that all of us. This is a rare illness and difficult to handle for the Doctors as most of them do not understand that most of our problems has to do with our too sticky blood. If you have got APS that is.

HollyHeski
HollyHeskiAdministrator

Your steam is keeping me warm!! Keep fighting them and I hope you get the correct treatment today.

Keep wiggling those hands and toes to keep circulation as good as poss while your layed up.

Wishing you a speedy back to quality health xxxx

I do have an APS specialist at St Thomas’s who I can phone if needed as they are 200 miles away. I do get the local hosp to copy everything to St Thomas’s

My local anticoagulant team are very good, and we discuss dosage etc and they listen to what I say.

I have had an echocardiogram which showed a few probs, well more than a few, but we get on with it.

Many many thanks for all your good wishes it means a lot to me, I’m feeling tired but that’s hosp for you. I am on the mend and hopefully will be home soon.

Love and hugs

J

Sound off! You're not just venting, you're helping future patients!

I do try to educate people it’s so important. It’s slightly better now than when I was diagnosed some 20+ years ago, but medical staff still need to be kept informed. The more you talk about it the better it is

J

HollyHeski
HollyHeskiAdministrator in reply to judes

I hope youve had your fragment today?

Whenever I go into local hospital I inform St Thomas team, in the past ive asked then to call but they never do so I do it myself immediately!

Similar to you, I've had an argument about having clopidogrel and aspirin on top of my clexane! I have a bag ready at all times and hide it, so if they don't give me my dose I do it myself (I didnt say all that officially Lol)!!

Hoping you get well soon and manage to get home xx

KellyInTexas
KellyInTexasAdministrator in reply to HollyHeski

Didn’t read a thing there....🥰

That’s very crafty but what a good idea!

Have had my Fragmin today which is just as well as INR has dropped to 1.3, really don’t know why but prob the meds they are giving me.

I need to see my kitties!!

J

MaryF
MaryFAdministrator

Good for you with your fighting spirit from a hospital bed, if they don't sort it... it leaves you no choice but to be politely assertive, best of luck and keep us posted. MaryF

I like the term ‘politely assertive’ some would say I’m a bossy grumpy old woman😂😂😂

Will update as soon as I know anything

J

KellyInTexas
KellyInTexasAdministrator in reply to judes

.... well, there is a time and a place. This is the time and place. Is there a hospital patient advocate for you? Just wondering how that might work?

Yes every English hosp has an organisation called PALS, patient advocacy liaison service, who can act for patients.

Oddly enough I’ve never needed their services managed to sort things out myself😁😁

Will give a full update tomorrow

Love and hugs

J

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