Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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off warfarin today!

jmac67
jmac67
im six months out and today 6pm came and went - i didnt take any warfarin and hope its the start of a new beginning for me! fingers crossed - i fully expect the nerves to kick in over the next few days and to feel every little niggle - and probably panic greatly and have a few trips to A&E over the coming weeks, months as i get used to the new me. (infact i will probably never travel further than a 10 mile radius from the local hospital - lol).
I havent been on here much for the last month and have just followed the post re hobbies - it was such a breath of fresh air!
The weather here has been amazing over the last week so ive been stretching myself a lot more and even walked the dog yesterday - thats a big plus for me - shes a big dog (bernese mountain dog) and i just havent had the energy to do this since october. Gradually i am getting better, more energetic - the sunshine helps - i am able to do a little more each week but still have days when i know i have done way too much and i suffer a bit - suffering now mainly consists of breathlessness (at the time ive done too much) and my heatpad on my back for a few hours usually eases the ache in my chest. I am still only working 3 days rather than 5 but plan to add in another day very soon - my dr is being great in supporting my slow phased return to work (although i think my boss is getting a bit fed up with me).
I will keep you all updated and be on here for support - cos i know you are all great when i need you! x
jmac67
jmac67
saw dr - he says dont worry - tested blood and i used an automated BP machine they have that will link in to my medical records, they will contact me if there are any issues. whew!
jmac67
jmac67
feeling a bit better today, breathing easier, still short of breath if i do too much but optimistic that my aches and pains over the last week have just been me thinking im super woman again!
deleted_user
deleted_user
You are really making me look forward to my last Warfarin day!! I know I will freak out, but I've been exhausted since I started warfarin, not to mention GI troubles have been 100x worse, oh, and I really wouldn't mind getting some of my hair back either!! :)
jmac67
jmac67
im not sure whats going on! i feel as soon as i do anything im done in - dont have much energy this week at all - last week on the other hand i had bags of the stuff - thats what you get when you use it all up in one go! roll on the good days! im back to work tomorrow after 2 weeks holidays - it could be interesting! im only doing 3 days this week so hope to manage that ok.
jmac67
jmac67
Ok, it's time for u all to have a laugh, at my expense of course! Today I left work an hour early to go to a&e as I thought I had more clots. Heart racing, feeling clammy, chest tight and hot. Chest xray and blood tests were done and I'm clear. Infact the d dimer test was on the low end of low rather than raised! I felt terrible for wasting their time but the dr was really nice and said I was right to go, have to admit I'm glad I went cos I would have just ended up there tonight if I hadn't. It was inevitable I would panic & go at some time...... Oops. I was merely paving the way for all of u that are due to come off soon, so that you know it's ok if u end up doing the same. and now time for chocolate I think......
TossNTurn
TossNTurn
I did two repeat tests to the ER after my PEs too. Nothing but anxiety both times. I did feel a little silly (especially the time when I called the ambulance), but better to get checked out than spend all night worrying about it.

A few repeat trips to the ER are totally a rite of passage with PE recovery. You've made it!

As for the chocolate ... wanna share?
deleted_user
deleted_user
It's great to be off Warfarin. (I stopped taking it 8 days ago after PEs 6 months ago). I'm interested in knowing what others recommend now. I'm drinking lots of water and steering clear of food with high Vitamin K in. (I really don't want another PE so making lifestyle changes I can do to avoid them). I don't eat food or have hot drinks after 8pm (so that I don't sweat at all over night - in the weeks before my PE I had many night sweats and wonder whether the associated dehydration was a factor). I also wear flight socks for car journies > 1 hour, and drink lots of water while driving. These all seem like sensible precautions, but I'm interested to hear other's views.
Thougths and best wishes are with you jmac. I know just how you feel. Any slight pain or being short of breath and you worry. Look after yourself and I'm sure you'll be OK.
jmac67
jmac67
today has been a slightly better day - around early evening i kind of got a new lease of life and did some light housework - and that was after being in work today too! now im suffering as a result - im actually in pain now rather than the discomfort that i used to feel - think another trip to the dr is going to be happenning soon - the pain is middle of my back - to the back but kind of under my ribs if you know what i mean,. possibly the onset of a chest infections but things seem to be clear at the moment. wish it would all just go away (thats the polite version of how i feel!!!!) i dont want to tell lies but when someone asks me how im feeling today i really wish it could be answered 'great thanks'......hopefully soon.
deleted_user
deleted_user
Just keep taking little steps, I think you're doing great. :)
deleted_user
deleted_user
I agree!! You're doing great! I'm having a complete meltdown today and I'm still on warfarin with an INR of 2.5. My doctor is out of town, my psychiatrist is worthless and I'm not getting my weekly reassurance that I'm ok. (Yes, that's how pathetic I've become!).
jmac67
jmac67
you all cheer me up! thanks guys!!! i am feeling a bit better today - managed to walk my wee girl to school, have done some light housework and have enjoyed my day off today so far - still doing my phased return so im on a 3 day week this week - i can honestly say that i needed that time off to recharge my batteries today - pain lastnight felt kind of different however today i would describe it again as in my lungs so im happy just to plod on, well just now anyway. i was starting to question myself lastnight - is it my lungs or something else in that area - breathing is ok. Problem is that i am 6 1/2 months out and its getting painful now? i only had pain the first 2 days - the rest of the time i would say it was more of a discomfort - recently ive considered pain killers which in my opinion doesnt seem right after all this time - if it continues into next week i will definitely return to the dr - again! she honestly must be sick of the sight of me by now. its a lovely sunny day here (still cold though) so i think i will get some fresh air this afternoon.
deleted_user
deleted_user
Some may disagree with me, but I've found that if I start to have some kind of pain in my chest I will take half a tylenol. Not enough to kill major pain, but if the pain goes away or significantly reduces, I can calm myself down better b/c half a tylenol wouldn't cut the pain of something really serious. Also, if the same pain comes back later I feel a little better about ignoring it! I don't do this often, but every once in a while when I get an odd pain in my chest.
TossNTurn
TossNTurn
I didn't develop any pain until about five weeks out and even then it came and went depending on how hard I was pushing myself. Even now, if I'm out on a walk in the cold wind or something, I'll start to get a touch of an ache between my shoulder blades. That's pain I only had with the PE. Doesn't worry me any more, but I've had a couple years to get used to it.

Checking in with the doc is always a good idea if it is causing you stress. As for the Tylenol, if it works, go for it! Sometimes these treatments are more mental than physical...
jmac67
jmac67
well guys im pleased to say that the week has turned out to be much better as its gone on! i walked the dog on wednesday and managed to walk back and forth to school for my wee girl - started to feel more energetic and managed work much better on thursday. Tonight i have a night out with colleagues from work - it will be my first night out since August last year! New shoes at the ready! Gin & Tonic here i come - note to self - DO NOT OVER DO IT!!!! Roll on the weekend.....
jmac67
jmac67
i dont mean do not over do it with the G&T i mean energy wise - lol - im not much of a drinker - think max capacity will be 2 this evening - maybe 3 - cheap date or what...