Two years on and another DVT !

[berty bassett]

I haven’t read all the posts on here so will only give my pennies worth
I thought I had sprain my calf muscle a few years back and just tried to ignore it
It did go away and leg felt better , just to feel a bit rough and decide to go bed and sleep it off
I woke up a few hours later in pain the like I have never felt before in my side , couldn’t move couldn’t shout for help , my missus had to dress me and call an ambulance
Clots had hit my lungs - 3 I believe , backed the blood up and damaged heart and been on apixaban since
No hardship to take a few pills a day to help keep you kicking , I know what I would do - I consider myself lucky really as I look after myself reasonably well and got over it well - could have been a hell of a lot worse

 

[ColinJ]

I thought I had sprain my calf muscle a few years back and just tried to ignore it
It did go away and leg felt better , just to feel a bit rough and decide to go bed and sleep it off
I woke up a few hours later in pain the like I have never felt before in my side , couldn’t move couldn’t shout for help , my missus had to dress me and call an ambulance

Yikes - it's a good job that you weren't alone! I was when I collapsed with my first PE but I came round some time later and managed to crawl to the phone.

These days the INR tests (a measure of blood clotting time) for those on warfarin are usually done with a fingerprick sample analysed by a small handheld gadget but when I first went on the drug, I had to give a venous sample which was sent to a lab to be analysed.

One time I was having a chat with a nurse who was taking the blood sample from my arm. It turned out that she'd had a DVT/PE too and was also on warfarin...

She had been out in the garden with her husband and felt a sharp pain in one calf muscle. A few seconds later she noticed that she had become short of breath. She turned to her husband and basically said "Darling, you need to take me to hospital now, because I have a life-threatening illness!" He looked somewhat stunned, and asked what she was going on about. She said that she knew the signs and had felt the clot in her leg, and could immediately tell that it had broken up and some was now stuck in her lungs. He rushed her to A&E where tests were done which confirmed it... It was probably the quickest that anybody has ever received treatment for the condition!

 

[AlanW]

In an earlier post I said that in the beginning I was waiting for a CT scan and it was cancelled and it was never explained why after the GP had recommended one.

Talking to the GP last night I asked why, he said that while he was disappointed they had not done it, the reason given was to not increase the risk of promoting cancer cells from bombarding me with radiation. I was on the correct dosage and medication as a treatment plan for DVT so if a clot had moved to my lungs then a CT scan was deemed pointless as the treatment plan would be the same.

But meanwhile, Im now booked in to have a chest x-ray

So while I still remain short of breath its a waiting game now for the body to naturally breakdown the clot which could take weeks or months to clear according to the GP.

 

[ColinJ]

In an earlier post I said that in the beginning I was waiting for a CT scan and it was cancelled and it was never explained why after the GP had recommended one.

Talking to the GP last night I asked why, he said that while he was disappointed they had not done it, the reason given was to not increase the risk of promoting cancer cells from bombarding me with radiation. I was on the correct dosage and medication as a treatment plan for DVT so if a clot had moved to my lungs then a CT scan was deemed pointless as the treatment plan would be the same.

But meanwhile, Im now booked in to have a chest x-ray

So while I still remain short of breath its a waiting game now for the body to naturally breakdown the clot which could take weeks or months to clear according to the GP.

This is what I have to explain to everybody who asks me what I do if/when I think I am clotting again. I am already on the treatment for life, so it is a case of avoiding making things worse, and letting the body heal itself as well as it can. There is no point in me wasting my time and that of the NHS to confirm what we already know, only to be told to continue doing exactly what I was doing before... People don't accept that though. They seem to think that doctors are able to fix this kind of problem overnight.

I found that moderate exercise, avoiding dehydration, keeping the legs warm (cold blood is more clotty), and elevating the legs when resting did the trick for me the first couple of times. I also use a compression sleeve on the calf of the bad leg to reduce swelling.

 

[RichK]

Apologies for not reading the whole thread. I've been on anti-coagulants for about 11 years following two pulmonary embolisms (blood clots that lodge in lungs). Second was after I'd stopped taking the warfarin but means I'm now permanently back on them. Newer drugs (apixaban in my case) are much better than the older warfarin, with much less testing (once annually as opposed to every couple of weeks!) Once in the routine of taking them it's no so bad. I have some residual damage on one lung but nothing too serious (I only notice it occasionally). Doesn't stop me cycling (including some timetrialling).

 

[Chislenko]

My story echoes many others. PE first, rushed to hospital and treated.

Warfarin for six months.

Doctor. "Come off them for now and see how it goes"

Three months later a right leg DVT.

Now on Rivaroxaban for life. One little tablet per day to hopefully extend my days.

 

[AlanW]

I'm on Apixaban now, but tablets twice a day, currently 5mg each tablet, but the GP said that will reduce to 2.5mg twice a day after six months has pasted.
I was on 10mg twice a day in the first week.
I was hoping it would only be one tablet a day only coz lm terrible at remembering to take medication at the best of times!

 

[ColinJ]

I was hoping it would only be one tablet a day only coz lm terrible at remembering to take medication at the best of times!

I missed doses a couple of times early on, so now I have alarms set on my phone and make sure that I always have that with me.

Ha ha - today's 6 p.m. alarm has just gone off to remind me - hang on...

Ok, that's me taken care of for another day!

My dose gets adjusted according to blood test results so I don't necessarily take the same dose every day. Currently, I take less on Sundays and that is very easy to get wrong without a reminder. I set one alarm for each dosage so I have a Mon-Sat alarm which tells me to take 7 mg, and a Sun alarm which tells me to take 6 mg.

Even with the alarm, I was making mistakes. I would switch the alarm off as soon as it sounded and if anything happened before I could take the pills (knock at door, phone ringing etc.) I could get distracted and forget.

Now I take the phone to the drawer with the pills in, with the alarm still sounding. I take the pills and only then turn the alarm off. With this new system I haven't made a mistake in over 9 years.

I'd recommend that other forgetful medication takers adopt a similar approach.

My older sister has to take a bewildering set of different meds at different times so she has a special gadget which she calls 'the spaceship'. It has multiple alarms and locked compartments which only open when that particular cocktail of pills need to be taken. Her husband loads it up for her once a week. I think it is one of THESE.

 

[ianbarton]

I missed doses a couple of times early on, so now I have alarms set on my phone and make sure that I always have that with me.

A couple of years ago we went on a holiday in South Wales. I am on Warfarin and had forgotten to take my Warfarin with us. I contacted a local GP to see if they would give me an emergency prescription. The GP said he couldn't do that because I am English! Prescription medicines are free in Wales so we poor Englanders are at a disadvantage!

 

[ColinJ]

A couple of years ago we went on a holiday in South Wales. I am on Warfarin and had forgotten to take my Warfarin with us. I contacted a local GP to see if they would give me an emergency prescription. The GP said he couldn't do that because I am English! Prescription medicines are free in Wales so we poor Englanders are at a disadvantage!

Yikes!

When going away, I not only check that I have packed the cartons of pills, I also check inside the cartons to make sure that they contain enough pills to last the trip.

Prescription medicines are free in Wales so we poor Englanders are at a disadvantage!

English visiting Wales, yes, or if under 60 years old in England. I don't have to worry about charges now.

 

[ianbarton]

English visiting Wales, yes, or if under 60 years old in England. I don't have to worry about charges now.

I was over 60 when I forgot my tablets, but this didn't seem to make any difference. I think the NHS should make people aware of this situation. I am sure many other people have been caught out by assuming that they would get the same treatment in both Wales and England.