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

Chest and lungs
1

I was rushed into hospital 2 weeks ago and eventually diagnosed, after a CT scan, with DVT and a Saddle PE. The clot in the lungs was very large and there is also one in the calf. This has been attributed to a few long haul flights in recent months. I had a heart echo scan and was told my heart was enlarged due to the strain it has been under.  Was given injections of Tinzaparin whilst in hospital and started on Warfarin. Due to the pressure on beds I was not on the ward I should have been on and doctors had to travel from the other end of the large teaching hospital to see me each day.  I never saw the same person twice and was given much conflicting information, was given an incorrect dose of warfarin once and a blood test was 'lost' once.  My INR was, and still is, all over the place and I was told that I am very sensitive to Warfarin.  I was sent home after a week with daily visits required to the  Acute Medical Assessment Unit for blood testing.  I am expecting to be referred to the hospital Warfarin clinic this coming week.  I have been told that another heart echo scan will be arranged for approx 6 weeks time when I will also 'see someone'.  I understand that I will be on Warfarin for at least 6 months and possible for life.  My case will be reviewed in 6 months time.  In the meantime I find myself very confused as to what I should be experiencing now and what risks I may still be subject to, (I was told at one stage that I was in imminent danger of cardiac arrest or respiratory failure).  I feel fine when at rest but struggle with breathlessness and pain in the leg, (from the blood clot?), when walking.  Getting to and from the hospital is proving very difficult as I am travelling on my own on public transport. To be honest I feel really scared!  I have no idea who I can discuss my fears with and am not in contact with anyone medical who can answer the many question that keep jumping into my mind.  For instance, would wearing a compression stocking help with the leg problem?  Am I still at risk of sudden collapse.  What happens to the clots, could the remaining one in my leg still travel to the lung? Will I ever get back to full fitness? Will I ever be able to fly long distance again or will it be too risky?  I just wish there was someone, either medical or with personal experience that I could discuss all this with. Anyone else in a similar position?

Thanks for reading, even just writing this down has helped a little!!

2

Hi Allexie,

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!     

 

3

Brilliant answer

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

4

Wow...many, many thanks colossus, you have no idea how much I appreciate your reply, thank you so much for taking the time to respond.  So much of what you say corresponds with the little bits of info I was given in hospital and also the research I have done since.  I asked at the Acute Assessment `clinic why they didn't use the instant 'finger prick' test system, (I believe it is similar to the home testing kit), and was told that they do not feel it is reliable!  I understand that some Warfarin Clinics do use this system though???  Very confusing.  Although my time is very much my own, (early retirement), I am finding it takes a good half a day traveling to and fro to hospital appointments which is very exhausting at the moment.  I have always been very fit and active so this 'being ill' is all new to me.  In fact it was probably the long haul flights to Peru to walk the Inca Trail that caused the problem!  Must say that when at rest I do not feel at all ill and friends seem to assume that I am back to normal.  One friend drove me to M & S this afternoon for food shopping and wandered off in the store.  I have never been so glad to find the shoe department and its seating area!!!  What you said about being on Warfarin when flying and being at least risk of clotting because of it also confirms what one medic said. I'm relieved to hear that my dreams of continuing to spend my retirement travelling to far flung places may not be in jeapardy.  I'm sorry to hear that your condition did not resolve itself quickly and I will bear in mind what you mentioned about CTEPH.  I send you my best wishes and please be assured that your reply has helped me enormously!!!

5

Many thanks gillian 81509 for your response.  I guess I am just impatient wanting matters to resolve themselves NOW!!   I have just made an appointment to see my GP, (thanks for giving me the 'push'wink, about the leg problem.  At least it will give me a chance to discuss this one aspect at least!  In the meantime I guess it is just a case of onwards and ...er umm....onwards!!

Many thanks again

6

Your not alone m8. For now, keep taking your medicine and get your bloods checked. Going by public/private transport is gonna cost.

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...

7

Thank you so much for your response.  You are so right about being reminded of 'it'!  Night times are the worst....being aware of the heart beating.... Is it racing? Did it miss a beat? Why is my breathing more laboured?  Does my leg hurt more than usual?  Not so bad during the day when there are distractions but in the middle of a sleepless night it is all so hard to deal with.

8

I try and keep myself occupied during the day and go to bed ready to sleep early.

When I'm awake/nd at night sometimes,...i do not procrastinate...

go to toilet if need to - don't hold it in..- use bottle, bed pan or toilet

drink fluids if thirsty...

eat if hungry...

do a 'to do' list for the morning

and so on......

once settled,..

I lie down in a comfortable position, may be lean over to the left slightly in an uprightish position- legs slightly raised - pillow under feet...and refect, relax muscles and just go with it... 

You may be feel lonely, but you are not alone.

9

Hi Allexie

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. 😃😊

10

Were you diagnosed with first onset or after really being ill

11

Were you diagnosed correctly or after many mis diagnosis

12

Were you diagnosed correctly using the proper system or after numerous 'unwell'episodes

13

Hi

i was misdiagnosed in 2003, told I had poor circulation and to go to the gym, the clots broke from my leg to my lungs because of it. I continued to have a bruise on my leg & my leg continued to swell so I continued to go to the doctor.... On the fourth visit I was told to rest & if I had the problem the following day I should go to A&E - I di & within 30 minutes I was admitted & kept in for5 days,

this is time the doctors have been great, they have aired on side of caution & sent me for further tests due to my history & that's how I was diagnosed within 3 hours of first going to the doctors I was admitted to hospital and given timsaparin. I can't fault them this time.... So far

14

Allexie,

I still read these threads, the internet is an amazing resource of information and may be complicated to navigate at times. You will read different peoples experiences of PE, treatments, research etc. May be a lot of information and clutter.

Anyway.

I'm still here, on the yo-yo (less turbulent) mend....(in my case, it still takes time).....btw..I'm finding that porridge helps balance my sugar salt levels and is quite nutritious with dried fruit or some honey, I found out recently it's also good for lowering cholesterol. I am not aware of any allergies associated with porridge, pls check if not eaten before.

I also have plenty of fluids every day, and am striving towards getting more sunlight (lucky me smile ) and started taking standard multivitamins and minerals and omega 3 capsules. That's my (simple core) diet taken care of...

Forgot to add, I drink less coffee and tea now; I find caffeine makes my heart beats faster.

After a busy or boring day, I enjoy quiet, and on that note, I'm off to sleep. Good night.

15

I was studying for my A'levels at the time and Initially I noticed that my arm started to ache after prolonged periods of writing, I didn't think too much of it as I felt fine at all other times. This continued for about a year in total, and by the end of that period I had developed a huge lump in my armpit, my right arm would swell whenever I used it, I went from being an extremely fit long distance runner to someone who got out of breath from just going up the stairs at home. I started to suffer from really bad bed sweats, I would literally wake up in a soaking bed. 

I went to my GP with the above symptoms, he didn't really seem to know what could be causing it, but referred me to a specialist. I received an appointment for 2 months time. One day my arm was swollen so bad that it actually went black. My parents took to A&E, and a french doctor basically knew straight away said I was coming in. The chest x-ray confirmed that my heart was extremely swollen. She said that I wouldn't be alive in 2 weeks let alone 2 months.

Second episode I started to recognise similar sensations, went back to the GP. He was actually rather patronising and suggested that I was just having panic attacks and should try breathing into a paper bag!! So I went to the consultant under private health instead.

Sorry a rather long winded explanation but basically my GP has failed to diagnose twice. Hospital consultants have been excellent with their diagnosis. 

 

16

Hi Curlyhairdo!

Thank you for your response and so sorry to hear that you have had a recurrence.  I guess that possibility is going to be another worry for us all in the future.  Glad to hear that you were still able to fly after your first 'episode'.  I saw my GP the other day and he mentioned that I could have the Tins injections if and when I feel like flying again.  I also got a prescription for the compression stocking but i'm not getting on too well with it.  I'm wondering if it isn't too big as it comes too high up my leg which results in 'roll down' and becomes quite painful!  I have gone back to wearing my old travel stocking, (which did nothing to prevent the PE!!), but which seems to provide comfortable support.  I'm a bit confused about this as I wasn't given any instructions whether to wear them for 24 hrs per day or just on waking and moving about??  Your comment about counselling re taking Warfarin has intrigued me as I have not heard of that.  Actually it would be great to have counselling re the whole DVT/PE experience!

Wishing you all the very best.  xx

17

Hi gillian81509

I had a small clot in the, (other), leg some 40+ years ago which was attributed to taking the contraceptive pill.  This time I did 4 long haul flights in 5 months and on returning from my last holiday in November I never really felt properly well.  I was a little breathless and had a very slight ache in my leg which I put down to the fact that I had spent 3 weeks at very high altitude, (16,000ft+), and had done a lot of hill walking and mountain climbing. (I walked part of the Inca Trail in Peru)  On returning home, the leg ache disappeared and I put my niggly health problems, (cough, lost voice, chestiness) down to the bug that everyone else seemed to be suffering from at the time. As things didn't improve I started to research my symptoms and I realised that it might be a DVT/PE.  I made an appointment to see my GP but couldn't get in until 6 days later.  The following day I almost collapsed with breathing difficulties and had to call NHS111 who sent a paramedic and ambulance.  I was diagnosed the next day.

18

Hi there

I am very interested in your diet tips...thank you for the info.  

I have been strictly vegetarian most of my adult life and love my mature cheeses and green veggies but have read in the 'Yellow Book' that they must be taken in moderation due to the high vit K they contain.  On the other hand the Warfarin Clinic people have said just to eat normally but not to consume large amounts of the vit K containing foods.  I mostly drink coffee but I do love my red wine and have been in the habit of having 2 largeish glasses every evening or when dining out.  The book seems to indicate that 2 units of alcohol are OK though. (Might have to start using a smaller glass sad)  The doctors said that I should start to feel better in 2-3 weeks and they seem to be right as I'm doing more and venturing out for short walks now.  I still feel very shocked but seem to spend less time worrying now.  Still can't get my INR anything like stable but I guess it's still early days, (now 3 weeks since admission to hospital and 2 weeks since discharge)

Many thanks to you, (and to everyone else who has responded), it really does help to read your comments.  xx

19

Good morning Allexie,

I have an addictive personality, moreso when I was younger, teens and twenties. I used to drink alcohol and indulge in recreational drugs, exercise and so on...

In my late twenties, i used to reflect on why I did such things and concluded, I wanted to fill a void in my life. And so, on a conscious/subconscious level for example I chose hitting a punch bag- being a young man, wanting to get fit and strong and be able to defend myself (two birds with one stone). I reached a point where I wanted guidance and looked for a trainer....

Going back to 'the yellow book', which confirms your limits for alcohol intake. I know red wine has plenty of antioxidants, and a little drink helps you lighten up after a tough day.

I have drunk alcohol twice since May last year, and following both occasions- felt it zapped my vigor. The hangovers didn't scare me or confuse me as I am experienced in this area and just go through the motions.

Because of my addictive personality, i am still looking for something to fulfil my insatiable appetite for physical, intellectual, emitional, spiritual, financial, material etc, etc, stimulus.

However, I'm finding PE puts a spanner in the works and my perfect aspirations, best of the best can do mantra, is now somewhat changed. I now expect less, as I am fortunate to be breathing and able. Albeit with occasional discomforts. I don't go out often, and so do not have the need to meet peer group expectations.

I have chosen a steady path to recovery. Whatever will be, will qi sara sara.

Atb.

20

Hi

When I was in hospital in 2003 with the DVT & PE my mum was diagnosed with breast cancer. mums fine now thankfully and been in remission for years but at the time it was scary.

I live in the south of England as my parents are in the north. I couldn't travel much to see her as I had my appointments down here. However things have changed now- I was in hospital this time up north.

I was off work a total of 17 weeks as I start to suffer stress as it hit me that I could have died & my mum. When mum had her chemo I would drink. I was warned that if I binged drank I could bleed internally but having little and often was ok within the guidelines.

This time round my blood was ok to be released from hospital but had started to thicken again so that I was back outside the safe zone - yesterday I got back inside so hopefully the next test will keep me in there but I know it's hit & miss to start with.

Hopefully this time round I won't have to be off work as long. I felt awful over the weekend but am starting to feel better x