It is Christmas Day and I think I'm d... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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It is Christmas Day and I think I'm developing PE's again. What do I do?

anniesensi profile image

Two days ago my INR dropped to 1.9, my target is 3-4. I incresed my Acecoumarol to 9mg for two days, (tonight being the second) and had 40mg Clexane yesterday morning and another 40mg this morning.

I had a slight cold for a few days around the time of my INR dropping, previously it had been 4.9

My history is, as far as APS goes: a stroke, ischemic legs, arterial clot requiring surgery... multiple PE's, oh and a TIA.

So... what do do... do you think the Clexane means I'm ok?

22 Replies

Merry Christmas Annesensi! Christmas day or not, I would be on the phone to my nearest ER and ask that specific question of a qualified person. It's that nurses job to find someone on call familiar with your case. Someone is covering your doctor, believe me. That somebody is probably a resident learning under him and this is his opportunity to cover for the big guy so maybe he'll be able to tell you via phone or maybe you'll have to make a visit. If you make a visit remember there will be people there far worse off than you and maybe bring a few cookies to share with the ER nurses. But it is definitely worth contacting the ER this morning. That way we'll be sure to have you up and about by the New Year, huh? Be prepared for a crowd at the ER. My family owned an ambulance company and inevitably my Dad would have 15 to 20 trips a holiday. No matter what time my poor mom served dinner, he would inevitably be called out in the middle and we would all be said and wait for dessert in case he got back. But usually the calls were back to back because people thought, "Oh,once a year just one drink. or just one more cookie or people get upset way past their resonable limit (my dad thought this the worst because it was so controllable and therefore unecessary byt family can be a very stressfull group!)

Anyway, call the ER and tell them what you said here. Make sure you are talking to the MD on call for APS (rheumatology/hemotology or even Neurology as a last resort. You should be able to get an answer that will hold you till your regular MD can call back. Good luck. Wish I had more to offer.

Smiles, hugs, prayers and a happy holiday for you!


Hi annie

If you're not feeling well or are worried at all you must contact nhs direct or get to A &E, irrespective of what day it is. You need to speak to a professional and get your INR checked.

Perhaps the stress of the day and build up to it has had an effect too.

Hope the girls have enjoyed the day, but put yourself first now to make sure you're ok.

Let us know how you are.

Jane x

Hi both of you,

Thanks for that advice. I have been a bit stubborn, I haven't checked these e-mails until now, and I am agreeing with you... This is the first Christmas I have had at home with just my partner and his boys and my girls! So I've been keeping busy, keeping the heart pumping as much as possible. But, I am feeling a familiar feeling in my chest.

So I am going to e-mail my nurse, I think it will go to the on-call, and wait to see what they say.

And thank you so much for taking the time to check in on here on Christmas day, I haven't wanted to worry my family, so I haven't said much, just that I\m feeling a bit breathless. But I know what I must do.


MaryF profile image

Yes to all of above, as who really would want to leave Christmas fun and wish to go off and get checked out unless some worryingly familiar signs were there... and if all ok, you have lost nothing. Happy Christmas. Mary F x

Hi Annie

Did you go get checked out hon?? Hope you ok!

Take care love n gentle hugs Sheena xxxxx :-) :-) :-)

Hi, I think it's just a chest infection. I don't feel worse... Thank you all for your kind thoughts, I hope you had a lovely Christmas xxx

Hope all ok with you? Please let us know. x

anniesensi profile image
anniesensi in reply to

I will, thank you. I think I'm ok, I think I have a chest infection. I'm not coughing, but I'm not getting worse either. I am not as breathless. It was the breathlessness that worried me...

Thank you all for caring xxx

Annie, did you speak and get direction from your nurse? Have you even heard back from anyone? Did you go to the ER. I don't think you are listening to your body. You, yourself said this is a familiar feeling and you know you ought to make an ER visit, Christmas day or not. Well, Christmas is over and now it's time to get some medical opinion. You really can't afford to guess with two girls, a new man and his boys. Family blending is careful work and you have to be fit for it to work. So, please, please, let me know that you have spoken with medical people whom have directed you and you are not GUESSING you have a chest infection. If it is an infection you need an antibiotic. Stop it before it gets worse. I know you don't need to hear this from me, but I am genuinely worried about you, and the fact that YOU aren't worried. Please, make the phone call to medical personnel and let the site know. I'll check in later and bug you again if you don't. It's the only sensible thing to do.



Hi Annie,

Just echoing Canary and bugging you too!!

How you doing?!?

Hope Christmas went well and the new family mixed well.

Love n gentle hugs Sheena xxxxx :-) :-) :-)

Gee Annie, It's been six hours and I hope you made that little trip to the emergency room. I wouldn't want to find out there's been an elephant sitting on your chest for six hours! Yes, it could happen to YOU!! Be safe. Speak with the emergency room. Chest things can develop very quickly and before you know it, it's pneumonia or worse. Why take that chance? Save your luck! Call and be certain. At least see if you need an antibiotic. Wouldn't it be silly not to let the people you love the most know that this disease is a part of you and it needs a little attention right now. RIGHT NOW~ I am sure they would want to take a little ride to the ER with you. You can explain the disease on the way, because if you're really trying to blend a new family honesty is the biggest part, both with yourself and them. It's a part of your life that will be a bother every once in a while and you hope it stays that way. If the disease gets worse - well it's the luck of the draw for all of us at this point. Now don't make me call England! (smiles)

Really, let the site know you have received medical advice. It's such a safe, sensible, 10 minute thing to do. Just call the Emergency Room. If they say not to worry then hip-hip-hooray, but don't chance it. Believe it or not you're important to somebody and how would you feel if they "just let it go" and "guessed" at ill feelings when they are "familiar ill feelings" and you know what to do.

I hope you are doing well and are just too busy to let the site know. But if we don't hear from you - Sheena and I will tag team bug you until we hear~ Big hugs.

Warm wishes,


Hi everyone, and thank you for your kind concern.

I have spoken with my Clinical Nurse Specialist at St Thomas' and he advised me to check my INR, then call out my GP. He is reassured by my INR which is now at 3.0, which is just in range, but has increased my Acenocoumarol for a frw more days anyway.

My GP came out this morning and checked me over, no sign of infection, no sign of DVT.

So I am reassured.

I am very glad to have such a good team over at Tommy's, and also very glad to have support on here.

Thank you, and I hope you all have a very safe, and healthy, happy new year.


Whew! (That's the sound of relief!) I'm so very glad you received advice from the professionals. I'm also glad you're GP was kind enough to come out to physically check you. Those words, " no sign of infection or DVT" are really great to hear. Well, it may have been just a scare this time, but don't let it make you hesitate to listen to your body next time. It's always safer. So very glad you are well and going into the new year happy and healthy.

Good luck in your blending of families. Bless you all for the new year.

Warm wishes,



Thank you Canary.

I think it was listening to my body that allowed me not to go into panic mode and to tentatively wait and see whilst listening to my body and being aware of the symptoms. But by being able to come on here and have a gentle freak out allowed me to get it all into perspective.

Yes, you are right - I have a fantastic medical team, and good fiends - online and in the real world too.


MaryF profile image
MaryFAdministrator in reply to anniesensi

Yes, well said you are the expert in this situation, we can all offer advise and plans, however you played the waiting game and in this particular instance you were spot on. Hope you continue to feel better. Mary F x

Count your blessings!

Warm wishes.


Every Day.

Hi Annie


So glad all checked out ok!!

Love n gentle hugs Sheena xxxxx :-) :-) :-)

anniesensi profile image
anniesensi in reply to jessielou

Thank you Sheena. I know, a relief indeed.

You know, it really helps to have this place where everybody not just understands, but KNOWS what life can be like being ill all the time. As in, everybody here has had to face their own mortality -- and that is a very difficult thing to do. Every time I go into hospital all I can think is that "I'm not ready yet!"

My new years resolution is one I have already started, and will continue... saying sorry to people who should be apologised to, re-aquainting with old friends, and not worrying anymore over those that don't seem to be such good friends after all. It's hard for people I know, but it's harder for us? Family is my priority. Family includes those wonderful unexpected friends who just come from nowhere.

The other resolution? Eat some greens everyday and stay out of hospital!

Go Annie!

Jade profile image
Jade in reply to anniesensi

I'm glad your news was good and that your GP came out, that is rare.

One word of caution watch the INR while introducing greens everyday then stick to the boring same amount everyday. Greens eaten randomly play havoc with INR. I know because I refuse to eat the same thing everyday and suffer for it.

Second that last resolution hon, but steady with the greens!! :-)

Hugs n love Sheena xxxxx :-) :-) :-)

I feel your pain - you poor thing! Why would they let you chance it! It seems you need something stronger to keep it steady so you don't have all those problems! You should be on Fragmin or Lovenox injections to keep you level. I do hear in U.K. and other countries they aren't so eager to do so. Seems they wait and see just how bad it can get before they give you the "good stuff". Tell them because of all that has happen to you, you want something stronger so all that doesn't happen to you again. Don't be afraid of complaining too much! It might help you have less incidents.

you are NOT alone

Debi in Fl w APS

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