Hi Peter,
I hope you're right! But, even if I have to stay on the med, I'm OK with it. I'm just hoping I don't get any side effects from Xarelto. So far, so good.
Best,
Grace
Dawn, I've decided not to stop taking my med for a day of skiing--too scary. I'll be sitting it out & not skiing at all. I did have a sip of wine with dinner with lots of water and that was just fine. Moderation in all things...
Did you say you had problems on Xarelto & switched meds?
Hugs grace ... think for you best to keeping taking meds as all you do is worry at ‘ what if ‘ yeah I think u be fine with your wine, don’t give up on life altogether lol..
I was on Rixaban ( think that’s how you say it) just for a few months, and I seem to feel sick a lot with it, so consultant put me on apixaban and Iv been fine with that the last few years 🤗xx
Dawn, I hate taking meds, but it is what it is...I've been having an issue with pressure on my left temple for a few days now. Of course, I'm worried there's bleeding or some other horrible thing going on. It's a 2 on a scale of 10. Is this maybe a common thing with Xarelto or something I should call my doctor about tomorrow?
HIya grace .. did you get to the doc? It could be the med, that’s what I got on the first lot.. so always worth just asking and see what they say..
I know what you mean once you’ve had a PE we seem to be waiting for the next one, even tho we are on blood thinners... it still plays on your mind...
I hope you sort out what’s wrong, good luk big hug 🤗x
Hi Dawn...my doctor's office called back & their thought was it's a sinus issue, absent any other symptoms. I noticed someone posted that they also got a feeling of pressure and tingling on Xarelto, so who knows. I don't have any tingling...
I'm overly sensitive to any new aches and worrying about the next shoe to drop. Guess this just takes awhile to settle in and feel secure that the med is working. It's just been one month for me. I can hardly believe it even happened...
Did you stock up on the gauze pads that stop bleeding quickly? Saw those on another forum. Guess they are specifically made for people on blood thinners. Seems like a good idea.
Thanks for answering my questions and hugs right back to you...
Hiya grace... if you keep having probs that don’t go away ask to change, it was my consultant that said change, not my doc, he was going to take me off blood thinners, and consultant had to write to them and say no way am I to come this med...
No the only thing Iv got is the med band on my wrist, which I were all the time xx
Dawn, I feel like I'm in limbo caught between my primary doc & hematologist. I have no follow-up plan--how long on the blood thinner, check-ups, etc. When I ask my hematologist a question on his web portal, his nurse calls me back, and last time referred me to my primary doc. I don't know who is in charge! Do I just go back to my primary for follow up?
Hi grace.. I saw my consultant in December two years ago, and that’s Wen I knew I had PE, and he put me on blood thinners, and then I had appointment with him 12 weeks later to see how I was coping on blood thinners, he then changed my med as didn’t suit me... so I had to come bk to him again 8 weeks later... after then it’s my doc that I see if there is a prob, and if there is he sends me back to see my consultant again.... so it was the hospital I had my checkup with, and doc if I need to...
Iv been bk to my consultant, as breathing still bad wen I walk, so he as said because the clot as to go through your heart first, then in to lungs, my heart is still working to fast, and they need to slow it down with meds, and this is all to do with PE...
So for checkups like this I have to see my consultant, and if I need to change meds again it’s my consultant I see, as they know more about PE then your normal doc..
Hope that can help you at all, but that’s the way it is for me in the UK ..
🤗x
Thanks, Dawn, and sorry you are having issues with your breathing. Sure does take awhile for the body to heal. Hope the new med helps you.
I wound up messaging my primary doc & he recommended I see my hematologist to get a game plan to help both of us manage my risk. It's unclear what my chances are for another clot, but my hematologist has said they are 20% if I'm not coagulated. Think I'll be on them for at least a year, but likely for life. There are no surefire ways for docs to know and recent studies are recommending lifetime blood thinners for unprovoked clots. Like you, I want to be safe and don't want to play Russian Roulette with my life. My big worry is cranial bleeding, which I understand increases with age There is so much research going on and soon the FDA is expected to OK an antidote for Xarelto, so things will change and give us all peace of mind. Also, I read that should there be a bleeding issue, docs can replace the lost blood until the thinner med wears off (24 hours), so that made me feel better. I also have my bracelet on!
I hope your breathing improves, Dawn. Have a good weekend! Thanks again for all the support. ((hugs))
Grace,
You will probably be glad to know that the half life of Xarelto in a healthy adult is around 5 - 8 hours. So the window of any bleed risk is small, negating the need for an antidote in most cases. Warfarin is very different, with a half life of some 30 hours or more, so an antidote is necessary.
HTH
Peter
(Dawn, sorry to hear about yor problems 2 odd years on. Sounds like you got hit quite hard )
P
Hi Peter,
Yes, I'm very glad to hear that--thank you!! Puts my mind at ease. There's so much I don't know...
I tried to get a 2nd appointment with my hematologist--at my primary doc's suggestion--and was "blocked" by his nurse. She told me I didn't need to see the doctor again for another year, unless I had issues/side effects. She also confirmed I had a 20% risk of recurrence if not coagulated, and a 60% chance of it being another PE, so I'm on lifelong Xarelto. I don't know what scoring model was used to come up with those percentages, but originally the doc used DASH to score my risk. It's all so mysterious and I've felt from the start this PE was "provoked" by the flu/immobilization, but both docs now disagree.
What really surprised me...the nurse said I shouldn't travel by air for ONE YEAR! Does that sound right to you? Being on a blood thinner, I should be one of the most protected people on the plane!
Thanks, again, for weighing in, Peter!
Hi Grace,
Luckily, I had a very different experience with my haematologist - it was he who explained the differences between the anticoagulants. You are not alone in the lack of information, though. Many on here have the same experience and my pulmonologist only answers direct questions. (Thoroughly nice chap, but it's like pulling teeth.....)
Surprised about the air travel ban - I can't remember exactly, but I was told a couple or three months just to be sure things had settled down (and I had many very large clots on both lungs, also unprovoked). Not sure I would take the nurse's word for that one year ban. Could you write to the haematologist for confirmation?
All the best
Peter
Thanks, Peter...I don't know what I'd do without this forum, and especially all the good advice and comforting words from you & Dawn.
My hematologist is one of the "best docs" in my area--with a long wait list. He is a lovely man, a rare blend of genius & compassion, and truly a miracle worker for many fighting cancer. So, I'm not too surprised he has a gatekeeper, the nurse with the attitude & so-so info. I probably didn't need his level of fire power for what I have, but a dear friend of mine is the one who recommended him, because he is so highly regarded--just not as "available" as I need. He even said in my first app't that I didn't need to see him again. When I wrote to him recently, his nurse replied From what you've said, it appears the UK docs are far more involved in after care, which is wonderful.
I wrote back to my primary doc, who usually defers to the hematologist whenever I ask him a question...so I'm caught in this weird state of limbo. But, I agree with what you've said. I've been reading on the forum & elsewhere, and the most I've seen on a travel ban is 6 months & that is for long haul trips. I've got a 3.5 hr trip coming up in April and that puts me at 3 months. But, I'm a "worrier" (can you tell?? lol) and I'll press my primary doc a bit to give me the OK to fly then. By next year (hopefully), I'll be able to do a long haul flight. I have a long bucket list of places to go that have been deferred for a lifetime of work, raising kids, paying tuitions...I'm in catch up mode!
Oh, and I had my first margarita last night since my PE, and I survived! Your early encouragement to keep enjoying the simple (allowable) pleasures was and is greatly appreciated. I know what answer I'd get if I ask "Nurse Ratched" about having a margarita
Stay well,
Grace
Hi Grace,
Now the gatekeeper nurse makes more sense. I guess men and women in his position needs some kind of filter.
On the flying side, I am sure you will be fine -- just walk around, drink plenty of fluids and no alcohol (I used to travel a great deal and those few maxims kept me fresh as a daisy, even after long haul flights).
Loved the reference to Nurse Ratched....(although the film itself left an indelible mark on me somewhere deep down).
Keep taking the tablets and keep on smiling......
All the best
Peter