First Primary Doc App't Since PE

Hi Peter,

Thank you for the reassuring words. Every morning, I wake up thinking...I made it through another night. I feel so overly dramatic, but I realize you & others here know exactly what I mean. This forum is wonderful and I so appreciate the good advice and support.

Grace

Don't worry Grace - you are doing well. I spent the first 6 months leaving the front door unlocked so that someone could let my dogs out if I didn't make the morning. 

Still makes me smile when I think back  

Hiya grace.. sorry you to have had to go through having a PE..

But Peters is right in what he’s saying, I think because it’s such early days for you, it does play on your mind more, mines been 2+ years since having multi PE on one lung, and they still not sure where mine started so I’m on apixaban for life now, so consultant tells me, as they don’t want to take the risk.. my breathing is still bad, so just having more test to see why..

You will be ok, just take each days as it comes, and soon it will be put to the back of your mind..

Good luk, and keep talking on here, as we are always here to listen big hug 🤗x

Peter, I totally get why you felt that way! That's about where I'm at right now. But, day-by-day, I'm feeling more "normalized" and with the exception of my adult kids--everyone else in my world thinks PE is no big deal. We look & act pretty normal on the outside, but they have no clue how close we came to the brink and the physical and emotional challenges we're handling with PE.

What has helped to describe PE is to say it's a "heart attack in the lung" and then there is an aha moment. Not many friends know I have PE and I'm choosing to keep it that way for now, until I get my bearings. One friend I told is an internist, so she was the most supportive--immediately said, this is scary--and then went on to ease my mind after she kindly looked over my results. But, I had another friend say...oh yeah, my mother had it and the meds helped, not realizing there is a difference between a PE and a DVT. Treated it like I have a cold and it will be over in a few days. I wish.

Thank you, again, for the kind words and perspective. 

 

Hi Dawn,

Thank you--yeah, it stinks we have to be in the PE Club. I am also waiting to hear if I have a genetic link, which will mean I'm on meds for the rest of my life. I think your advice of taking each day as it comes is a good one. I'm just so grateful to have a new day to live and  once I know what to expect going forward, this will just be my new normal. One day at a time...

Thanks for the hug. Right back to ya 

Hiya grace.. how are you feeling today?? Yes I understand what you are saying, some people don’t understand how bad a PE can be to your life, my consult said I was lookey as the clot goes through your heart first then to the lungs 😧, so the pain I experienced a few times in the nite could of been the clot going through my heart ( so I was told ) I live on my own so very frightening to know that, so people don’t understand what PE is very bad ( or can be) like you said they seem to like say oh you be fine get over it 🤨 WHAT 

I must say I’m more at ease that I’m on apixaban for life, as think I’d be scared in case it happens again if I came of it... keep talking on here chic, as we have all been through the same so we understand how you feel, please keep intouch and let us know how you are going 🤗x

Hi Dawn,

Wow. Didn't know the clot goes through the heart first to reach the lung We are very lucky, indeed.

Last night, I had severe pain on the right side after having none for a few days. Called my doctor because I didn't know if this was an "old" clot the Xarelto wouldn't "fix." He said to take my pain med, oxycodone, which I did, but had a terrible reaction to it. Thought I was having a heart attack--numbness of left side & both hands, intense chest pain, dizziness. My husband took me to ER to check it out & when I got there my BP was 197/100. Fortunately, tests showed it wasn't my heart, but a likely reaction to this medication. I won't be taking it again! It is too strong for me!!

I can see why being on the meds for life would give a sense of security. So, if that's my route, I'd be fine with it. It's lifesaving. Sounds like you are doing well, so it gives me hope.

Thanks for your words of support. This is a great forum with such nice people.

Hi again Grace - forgot to mention the random chest pains.  They seem to be pretty common, but should not be too severe.  Also worth knowing - it's not the Xarelto (or any of the anticoagulants) that dissovles the clots. It's you body that will do that.  It is possible that some clots may not dissolve (they would become scars), but that is not always the case and many have no trace of the clots on recovery.

Sounds like a bit of a nightmare with oxycodone. Unfortunately, asprin and nsaid's are not suitable when on anticoagulants, so you are left with just opioids (like oxycodone) and paracetamol.  Bit of a pain that (no pun intended). 

HTH

Peter

Peter, that is helpful...I've noticed my chest feels weird at times...it's the pain on my right flank that's so bothersome. Oxycodone is a nuclear bomb of a pill for me...how do people even get hooked on it? It's awful. Guess Motrin wouldn't help either?

Hi Grace,

Well, Motrin is an NSAID, so theoretically should not be used with anticoagulants. Probably best to check with your specialist and follow his guidance.

As far as I can see, despite there being hunderds of painkillers on the market, there are only three types (all the variants being brands and/or combinations):

Opioid family of drugs

NSAIDS (including aspirin)

Paracetamol family of drugs

Anticoagulants takes out one of these, just leaving Paracetamol and opiods

Unless anyone knows better? (I would love to find another I could use).

HTH

Peter

 

Thanks, Peter! That is very helpful info--had no idea. Fortunately, the pain has subsided for now, so I hope it's gone. Wishful thinking.

Dawn, they didn't do an ultrasound, mostly because I wanted a quick read on what was going on & I suspected it was the pain pill. They did an EKG twice & matched it to my earlier ones and ran a blood test. But, if I have a recurrence, I will definitely request one. I've had a full heart workup where they shoot dye in your veins, etc. but I agree with you--better to go and be safe than sorry. 

I also have chills--have no idea what that's about. Had the flu in Dec. with severe chills, but they have lingered once in awhile, along with a cough. I read a Canadian study just released reports the flu can cause blood clots & heart attacks! Oh, and a slight taste of blood in my mouth, which has me gargling a lot! Guessing that's a Xarelto side effect, but I hope it doesn't worsen. 

 

Hi Peter & Dawn,

I wanted to report back with an update...I went to a hematologist after my primary doc diagnosed me with a clotting disorder, antiphospholipid syndrome, after running just one test, which is oftentimes a false positive when on a blood thinner. The hematologist ran more blood tests (I gave 42 vials of blood in a month) a full body CT Scan & scan of my legs. No clots in my legs, no clots in my lungs or scar tissue and everything else scanned was good/normal. My blood tests were negative for antiphospholipid syndrome and for Factor V Leiden. So, even though I had the flu/immobilization just before the PE, the hematologist is categorizing it as "unprovoked" so I will be on 20mg Xarelto indefinitely. I was hoping for 6 months...but, then again, I think I'd always be worried if I came off the blood thinner entirely. Better safe than sorry...and I'm relieved I don't have APS, which comes with a long list of complications. My primary diagnosing me prematurely with APS, telling me I'd develop lupus, etc. increased my anxiety tenfold. Glad I found a specialist to drill down and get a resolution for me quickly. 

Does this treatment sound right given this is my first PE?

Hiya grace ... I’m so glad you seem to have got yourself sorted out, or at least peace of mind... 

as much as we all don’t like taking meds, for ME I’m glad Iv got to stay in apixaban for life, as I’d be scared to death if I came off blood thinners incase a clot mite come back again, and next time I’m not so lucky to be here.. it just gives you a bit of peace in your mind..

You sound like they did every thing for you, to make sure all was ok, so I’m glad for you there, hope you feel some what better now big hug 🤗x

Thanks, Dawn...what you say is so true & I need to keep reminding myself of my new reality...better safe than sorry to take the med than not. My brain wants to go back to "normal" and my emotions are still catching up with the fact that I had a PE. I am so grateful to have gotten a resolution and to have everything checked out, so I have peace of mind and can move on. I'm tolerating Xarelto well thus far, and the hematologist said if I have trouble with bleeding, he'll just switch me to Eliquis.

Now, I'm trying to "push the envelope" on what I can and cannot do. My DH is taking me out to dinner tonight, and while I'd love to have a glass of wine with my pasta, I'm afraid to do it. I haven't asked my doc about an occasional glass of wine, but I've been reading mixed reviews. Maybe in a few months...He did say I could ski if I manage when I take my pill. Said to skip one before I ski & take it after my last run of the day, but I'm not willing to take the risk so soon. I dod get my medic alert bracelet tho!

So, I still have the fear...but I'm grateful to be here with life left to live. Thank you, again, for all the great support. Meant a lot to me to come here and vent and be understood fully. Hugs right back to you  xo

Hi Grace,

Treatment sounds good, so glad they are being so thorough and at least you know what it isn't now.  I am afraid that many PEs are finally characterised as "unprovoked", which is kind of a nonsense statement when you think about it - because something caused it, or it wouldn't have happened.

The good news is that they will probably monitor and, if nothing shows up, take you off the blood thinners in 6 months or so (yay!).

Hope you've got some blood left after all those tests 

All the best.

Peter

Hiya grace ... no I’d be worried to stop them for a day ski... knowing my luck that be a day wen I got another PE lol... 

I was on hospital last year, and it was a right pain getting in there, they had to send my hospital reports to a consultant to read up on, and check if ok to stop apixaban for a few days while I have the opp.... must admit I was nervous as scared in case I got another PE 🤔... 

think if your consultant said to stay on for life he will keep you on them... my consultant as said there was no way that I can stop taking them now, and must say glad..

As for the drink, apixaban is not the only med I’m on, I have to take 32 diffrent tablets aday, and I still have a drink wen I want to... life to short to not enjoy a drink now and again... it’s been ok with me and all my meds... 

well good luk and try to enjoy yourself now, not easy, but it will come to you 🤗x

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