DVT and Saddle PE 2 weeks ago, now scared and confused

Sorry to hear that you are unwell, as difficult as it is at times, try to remain calm. When I was 18 I had a massive clot in my shoulder which also lead to multiple PE's. I was in hospital for 2 weeks at the time, and I think I was heparin for 48 hours prior to clexane injections and warfarin. Although everyone handles things differently, perhaps I appreciate how worried you must be.

I'm quite shocked how you have been handled by the hospital, and I guess thats really indicative of the state of some parts of the NHS. By the way I'm now 36 still on warfarin and continually have to chase things up. Don't be too alarmed as in my case I experienced subsequent clotting in my early twenties and the PE's were caught too late and have had a pulmonary endarterectomy operation last year to remove them.

Firstly, a volatile INR can be quite normal so I wouldn't worry too much that it is, however you need to make sure that you don't fall below the lower threshold. Are you working? If so and depending upon whether you will have to take warfarin for life, I suggest getting a home testing kit. I bought my own, due to the inconvenience of the clinic times for someone who works. It also allows me to monitor my levels much more regularly, but I am at high risk of clotting anyway so this may not be necessary for yourself. 6 months on warfarin doesn't seem that long. Initially I was on it for a year, and then when I clotted again I was put on it for life.

First thing is you need to be prepared to almost take charge of the condition, don't be afraid to ask anything, express your concerns to doctors, your GP and anyone else at clinics. If you don't feel you get a satisfactory answer then be prepared to keep pushing until you are. Unfortunately you will find, or at least I did that PE's are quite rare so not everyone in the medical profession has experience with them. Make no bones about it, it is a serious condition, however it is treatable. The best advice I can give and any decent doctor will, is listen to your body. So from what you say it sounds like your body still needs rest, just give it the time that it needs. If they have caught them early then there is no reason why you won't go back to full health, even if they say you need to be on warfarin for life, then its not a major inconvenience, well to me anyway. If you are currently finding it difficult to get around at the moment, then speak to the hospital they should be able to provide transport for you to and from clincs. The risk of cardiac arrest is because the clotting in the lungs restrict the blood flow, increasing the pressure and thus putting strain on the heart. However, the biggest risk of all is to have this and for it to go undiagnosed.

As I mentioned you should get back to full fitness, and yes you'll be able to fly I haven't stopped flying and as the doctor said to me given you're warfarin you're now probably the least at risk of clotting when flying. I'm not a doctor but I'd say you are at less risk now of collapse, since you are being treated. Again, just be sensible give yourself some time to recover before trying anything too strenuous. 

One thing you should bare in mind, and this is in a small number of cases, for which I am one, is that for some people the clots in the lungs do not disperse. This can lead to something called CTEPH chronic thrombo embolic pulmonary hypertension. Please, please don't worry about this for now, firstly see how you progress on the warfarin treatment. In my case after a couple of years I still didn't get back to full fitness when I had seen many others who had in a short space of time. I was referred to a specialist centre and I have to say they have been excellent. But again this is only in a small number of cases, but is one of the complicating risks that can occur.

I completely understand you're scared, but the main thing is that you are now diagnosed and thus treatable. Be prepared to ask, when you go to the clinc ask if you could speak to a doctor there, as they usual have one assigned to the clinic. Give your body some rest rest for a few more weeks, take it easy to begin with.

Not sure if any of that helps!     

it can take a while to settle warfarin and it can change

it takes a while to get over all of these traumas set yourself 01/08/

Talk to gp about painful leg

Are you working or unemployed I'm thinking of your journey

whilst on warfarin the CLOTS will dissolve

You are gonna try and bounce back as soon as you can, and 'get over it'. It may not be so straightforward. My experience has been like a 'yo yo' path to recovery...and I'm still on that path.

May '14 DVT, Oct 14 PE, Dec 14- Chesty cough!!! What a nightmare!!!,

My energy is slowly returning, i'm taking a much steadier approach to fitness. I now listen to my body and go with it- rest, sleep, strain etc...

My diet has changed these pass three months and porridge is now a major component in my diet, i target to drink more fluids frequently 2-3ltrs daily.

My complexion has improved.

Pls do not rush back to full fitness, just go with it and take it very steady. I used to love exercise and did it quite intensively -

'I want to feel back on top!.'

There's no need to live in denial. Things happen.

A temporary loss, can be offset by growing as a person.

The people around you may not fully understand this, it's as much of a shock to them, as it is to you.

The quintessential difference is that you will be reminded by 'it' with each painful/tight breath, strange heartbeat, or twinge/s in leg/s, lung/s or heart at times...

I care. We've got to adjust...

so sorry to hear you're ill.

I was diagnosed with multiple PE in my main pulmonary arteries last week. I was in hospital for 2 nights and released with warfarin & timsaparin. Unfortunately my blood has started to thicken again as my blood gets used to the medication.

i had DVT & PE in 2003 and was on warfarin then for 6 months and had to wear the TED stocking for the same period. I could still fly after the warfarin ended, I ust needed to speak to my doctor and they gave me the injections to thin my blood for the flight.

now 12 years later I've got more clots. This is due to me being immobile after an operation even though I was on injections for 3 weeks after it. My 2003 clots were also due to a long haul flight, a long coach journey and going on the pill. I'm no longer allowed to take the combination pill. As this my second lot of clots Im no longer allowed to give blood & I'll be on warfarin for life. I too am waiting for the echo scan.

it is scary having the clots, I'm worried too but I know for me it's the shock of having them again as none of the ob tests were abnormal. But doctors aired on side of caution this time and pushed for further tests due to my history. Last time I was misdiagnosed 4 times,told Togo to the gym as it was poor circulation... This broke the clots off to my lungs.

i was asked this time if I had counselling on taking warfarin last time...I didn't but will be pushing for it this time.

good luck On your journey. 😃😊