Survived a Pulmonary Embolism and scared!

I am a 40 year old woman who was diagnosed with multiple clots in the arteries to both lungs back in February. After 2 weeks in hospital, I was discharged and am on warfarin for life as the cause of the emboli remains unknown. Life has been a rollercoaster ever since! I was given very little information about what to expect post PE and have extreme fatigue, chest pain, shortness of breath, palpitations and tachycardia. Occasionally, I experience similar symptoms to those I had prior to diagnosis and am never sure whether that is normal or requires an ambulance! My doctors seem pretty blasé about it all but my consultant has ordered an echocardiogram, a lung function test and 24 hour holter monitoring. Most of the time, I feel like they are humouring me and think me somewhat paranoid, but to be quite honest, I’m terrified. I feel like a ticking timebomb. My INR seems to swing from far too low, to far too high (7.4 last week). It is either low enough to worry about another clot forming, or high enough to worry about haemorrhaging. Is anyone else out there as terrified as I am?! Feel much better just writing all that down…….

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  • You defo not on your own .. Most try to put brave face on it I know a few docs should try living with our symptoms ... Perhaps gp's docs would be tad more human if they did eh.

    Good thing is you survived all ways a plus when it comes to diseases and docs ... Sounds like your condition is being well managed AM sure hospital would not discharge you if the was stuff lurking.

    It defo takes time to feel tad better IF ever but the worse thing is to worry .. Swelling of arms neck face is good indication of how your hearts copping .

    Ad try not to worry warrefrain is good stuff.

  • You poor thing, yea docs are like that" it's because they do not have our life," it sounds horrendous ,I hope you get over all this ,and begin to feel more relaxed,private is probably the only way to go when it is so dodgy like you, NHS has to work under so much pressure there is more negligence than ever, in the UK. How can one trust them??

  • I know how you feel...many times I think the doctors treat me like the little boy who crys wolf. I have a chronic terminal lung disease U.I.P. it's under the I.P.F. (idiopathic pulmonary fibrosis ) umbrella. For me in the last 10 months I lost 2 siblings to massive heart attack, both who had a check up within the last 8 weeks of their life. Both were from a widow maker left coranary artery blockage. So I ask my doctor what test could be done to see if I have a blockage in any of my coranary arteries cause I want to fix that asap. She did an EKG it was normal and I will have an adenosine nuclear stress test since because of my lungs I am unable to do the treadmill stress test. Many times I get the feeling that my doctor just wants me to nod and say ok, but it becomes a fear when family members one older and one younger die very unexpectedly. The point is a doctor should be able to help you understand and explain when one needs to be worried especially if you are clearly voicing your concerns. I hope you get all the answers you need so you can live a full life free from fear.

  • Hiya-like you I had a P.E in the lungs and survived to tell the tale. It is a scary time afterwards, wondering if every ache and funny feeling is it happening again, but being anxious can cause these problems too. You are under the care of the hospital and the doctor and having all the tests so that is a good thing. With warfarin you should be aware of some foods that can make your warfarin work better than on other days so giving a higher INR. If you look up on the Internet, it lists foods (mostly green veggies) to have in moderation. i know it is hard, but try to make ways to help calm yourself down, maybe yoga or meditation. If you are worried, you can always call the GP or NHS direct ( they have been very good when I have used them) and they can advise you. Good luck.

  • Hi, I've not had PE myself, but a friend had some serious PE's about 12 years ago. He is now 67 and is still managing OK, he has regular checks for his warfarin and other meds. He has had a couple of episodes since, but a short spell in hospital and he can do things normally again.

  • I have been on Warfarin for some years now and still get the occasional wild deviation Diet and a regular routine are, I believe, helpful in getting control of your bodies reaction. The list of foods to take in minimal quantities is on the leaflet that comes with the tablets. I have cut out alcohol altogether as the easiest option but if you continue to take it then make sure that is the same quantity on a regular basis so that the warfarin dose can be matched to avoid raising your INR too much. I only have things like Broccoli occasionally as that contains vitamin K occasionally. Make sure you have blood tests on a regular basis and you can live a normal life. Don't worry, the medics were not humouring you, they are making sure that there were no other factors present which were detrimental to your welfare. They don't usually spend money without just cause. Have faith in you doctors and try and relax into what could be a long time to come and enjoy life as much as possible. A daily dose of some of the humour on these pages would not go amiss.

  • Hi there, please visit another community group on Health Unlocked: Hughes Syndrome Forum (go to the green bar above, "My communities", "browse communities", enter "hughes syndrome forum", sign up and ask some questions). There are some very knowledgeable people on there discussing INR and warfarin and how to manage them with food and medication within acceptable ranges. I hope you are feeling a bit betterxxx

  • I survived a very scary and massive PE back in 2002 and have been on warfarin ever since. Your INR needs to be better managed. It should not oscillate wildly if monitored correctly. Does your surgery offer the pin prick meter reading, which takes no more than 5 minutes. If your INR is outside the target range, they should adjust your dose and test again, a week later. When everything is stable, you should go no more than 10 weeks between tests. If they're not giving you this service, you will need to demand it, or seek a better medical practice. It's your life, and you're worth it.

  • Hi all, Thanks for the replies! Nice to chat to some people who know. My haematologist has decided to switch me to one of the newer anticoagulants which is a relief. Apparently, they are much more stable with fewer interactions with other drugs, food and alcohol etc. They also don't require the monitoring that warfarin does. So! Just waiting for the heart and lung tests now and should have a better idea of where I am. I agree with you andmikel, humour is always a good way forward..... good for the soul!

    Thanks again peeps, and please keep in touch.

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