Pulmonary embolism and wafarin treatement

[Gren]

my wife (64) was diag. with a PE earlier this year the 6 month treatment with warfarin is due to end in Nov we are both concerned that no obvious cause has been found for the condition and what happens when she stops taking the warfarin ? Will it re occur? Info from local Gp very basic unfortunately

[Bevvy]

Some years ago my dad had a similar situation - he had, had 1 PE (like you no obvious cause was found) and was on warfarin for some months and then stopped taking it. Basically he was told by his then consultant that if he had another PE he would then be on warfarin "for life". In my dad's case this is what subsequenlty happened.

No idea what increased risks are of having another PE if already had one though.

Does appear that your wife treatment is common practice.

Hope this helps

Bevvy

[Hidden]

Hi Gren, to my knowledge mostly PE is caused by DVT (deep vein thrombosis) any one at any age can have DVT the common causes are long periods of immobility. DVT (a blood clot in the vein). From memory PE can occur when part of the clot in the vein (DVT), breaks away and travels to the lung, then it can result in pulmonary embolism.

I am not a qualified medical professional, this information is from memory of my training as a complimentary therapist independent of NHS but the training is that of recognised qualifications. Included in my training was the study of physiology which included pathology.

I would speak to your wife's doctor about your concerns with stopping the warferin, see what he/she recommends. There is other medication that also helps keep the blood thinner that your doctor may think is safe for your wife to take as a precautionary measure or the doctor may want to continue monitoring your wife without further medication and make other tests to see how the blood flow and clotting is doing. Maybe ask about a gentle exercise programme that may be of help long term for your wife also.

I hope with some explanation your doctor can help alleviate your concerns. Also do try contacting the BLF helpline for more information. they are open Monday - Friday 10am to 6pm 03000 030 555.

All good wishes to you and your wife.

Zoee

[Lymdor]

Hello Gren

I was unlucky to have had a saddle PE in February this year (Saddle means both lung arteries are blocked by the clot) and came within minutes of dying! I was lucky that when I got to A&E a specialist consultant happened to be there catching up on paper work before she left for her wedding!

I have to add that I collapsed in the road outside my house and lay on the icy frosty ground for around forty minutes watching cars at the traffic lights stop and stare and ignore me until a young local girl passed by and came to my rescue! Unbelievable!

I was in Resus for 24 hours then in hospital for ten days. I was put on Warfarin and also had to inject myself with Clexaine (check the spelling! LOL) for several days after discharge.

In August (six months after the PE) I was told I could stop taking Warfarin as I had had no further PE's.

It is, my consultant told me, standard clinical practice to stop warfarin if there have been no further PE's. I have to confess that I was terrified that without the warfarin I could/would/might have another - thankfully ok so far!

At 58 I have been forced to retire, on a very limited pension, as I had to take it early.

Physically I can no longer work because of my health - not sure if these are standard symptoms post PE but I tire very easily, frequently have chest pains and dizziness and even walking 500 yards in the morning to get my papers exhausts me for a few hours or all day. I have explained these symptoms to my GP who prescribed Isotard which seemed to excaerbate the symptoms it was suppposed to stop! I frequently get "hot flushes" - never again will I dismiss menopausal women!

I have good days and bad days, on a good day I have to be careful not to do too much because I know I will be paying for it the next!

Your wife is lucky to have you to support her. Please feel free to contact me directly if you wish.

Kind regards

Lymdor

[warwickstag]

I had a massive PE in 2002 and was hospitalised for 5 weeks, but at the first outpatient review the consultant said you'll have to be on warfarin for life, no suggestion of choice. I saw no reason to argue as it's a minor inconvenience monitoring it regularly. I suggest you express your worries and ask to stay on it if this is your choice. Good Luck.

[huffy]

I also had a PE last September and was on Warfarin for 6 months. I did have an operation and flew abroad some weeks later but no obvious sign of DVT in legs. Medics said it could happen at any time (I have Bronchiectasis) and the obvious factors may have contributed to the PE but not necessarily so. Anyway it was really scary - it was picked up when I went for my usual check up and I mentioned I was finding it difficult to breathe and had to keep stopping when I was exerted. Consultant thought it was a PE so had a scan and then immediately put on Clexane injections and Warfarin. I understand your worries; I had them too. When I went back after 6 months my consultant was going to put me on Warfarin for life then changed his mind because everytime I use antibiotics (lots) it sent my readings haywire. So had a nuclear scan (not nice) so he can keep check of things in the future. Please try not to worry, its been 6 months since I came off Warfarin and I feel fine.

[buchanloon]

I had multiple P.E's. diagnosed in April 2011, apart from being off the Warfarin for 1 month (for tests at A.R.I.) I've now been on it 21 months+. The time I was 'weaned off' the medication I was very worried thinking I might have a re-occurence of the P.E.'s but I never, that was a scary time. As said back on the medication. If my consultant in Aberdeen said "right we're taking you off the W." I like you would be concerned, because again (like you) I didn't fit into any of the known 'high risk' groups. So I think you/I have to hope that what triggered the P.E.'s was an aberration & hopefully unlikely to happen again. Re your comment re your G.P. I don't blame you there. The 'general' aspect of their title is appropriate there , if it can't be cured with antibiotics or pain killers, I don't trust them the same. They're best to refer you to more specialised doctors, I've lost a lot of faith in some G.P.'s.

[Allnlu]

I had PE in my right lung after I returned from holiday last year. After hospitalisation for a week and six months anti coagulant treatment I simply get a letter to stop immediately. I was somewhat concerned that there was no consultation before termination especially as I am due to fly to Phucket a 12-13hr flight. I managed to get hold of my consultant and explained to him I was travelling and he put me back on warfarin straight away. This is a big care loophole and could cause deaths, especially if your older and don't understand these things. My INR has dropped to 1.5 so I have a matter of days to get it in the normal range before flying. My advice is if you had a PE get regular check-ups.