UKC

A friend is currently in hospital with the above, after having found he felt light headed and was seeing stars, and didn't have the energy/ability to walk so much, and called an ambulance.

From what I gather, they aren't of a kind serious enough for direct intervention, with him being given extra oxygen, and having some kind of plastic bag over his head into which tubes are fed, towards helping his airsacks to open up, and (as I understand it) a gradual process of helping the clots to safely disperse being the plan. 

I'm somewhat surprised at the age it's happened, with him being 41 (and 5 months), but he's smoked on and off since his mid teens, likes his takeaways, and goes through feast and famine phases regarding being active, so perhaps it shouldn't be too much of a surprise, but it's not something I imagined happening.

Have any of the UKC medics got any top tips on how to best make sure it doesn't happen again?

Many thanks.

Your mate's best bet is for him to ask the doc that's treating him as he's the bloke with access to his past medical history, D dimer results, X ray and Well's score.

Probably not what you wanted to hear but still the sensible course to take.

Agree with Stichtplate, multiple risk factors for this sort of thing so I'd probably ignore any advice on here beyond the obvious lifestyle changes relating to what you list above, and go with the advice from those that actually have access to his history, test results etc etc.

Ta, that sounds logical, hopefully he'll take it on board, with the changes he's advised to make.

It's one of those things which make you glad to do a half good job at being healthy.

Stitchtplate speaks the truth. Always challenging to follow what’s going on via Chinese whispers. 
 

The body (99% of the time) sorts the clots out once correct blood thinners have been started; dissolving the clots rarely needed unless low blood pressure/collapse. Warfarin long gone for this - apixiban or Rivaroxaban etc much easier to use. 
It sounds like they might also be on CPAP, which is a little unusual in uncomplicated pulmonary embolism. But long term, full recovery expected back to normal. Hope it all settles quickly for your friend. 
 

b

Thanks for that. I'll possibly be nudging him to stay off the takeaways, once he's out again.

Being on apixiban myself, I've wondered (but never actually asked the Dr) why my dad's still on warfarin and not been transferred over.

Usual reasons are relatively poor kidney function (the new drugs are cleared by the kidneys, so if kidneys not good then they tend to build up too much), mechanical heart valves (still need warfarin) and some rare conditions like anti phospholipid syndrome.

Blood tests still needed on the new ones but only annually

b

Cheers for that. I'd often wondered myself but hadn't quite got round to looking it up.

Thanks, as far as I'm aware his kidney function's ok but at 98 it isn't going to be as good as when he was younger. Can't remember when he started on warfarin but it's quite likely to be before stuff like apixiban was available, certainly he was in his 80's already by then (2003).

Heart valve replacement (+triple bypass @91) was organic - presumably porcine.

I'm a pharmacist, and I used to specialise in anticoagulation.

Even a fit 98 year old man is unlikely to have sufficiently good kidney function to take one of the newer anticoagulants.

A biologic valve replacement & heart bypass in themselves would not be reason to anticoagulate, so I assume he also has an irregular heart rhythm.  If he's stable on warfarin (ie doesn't need blood tests too often) then I'd leave well alone.

If he needs INR tests every week or so, I'd ask for a review of risk vs benefit.

I've had them.  The doctors will deal with that by putting him on blood thinners, potentially permanently if he has risk factors for a recurrence (I do as I've had multiple DVTs).

It happened to me about the same age.

They only use clot-dissolvers in severe cases as they can dissolve beneficial clots, e.g. if you had a severe bang to the head which had clotted successfully it could result in a stroke.  The usual approach is to use a NOAC/DOAC e.g. apixaban/rivaroxaban, or if it doesn't work (as it didn't for me) then resort to warfarin, which is nothing like as disastrous as it sounds.  The one effect it's had on my daily life is that I now do wear a cycle helmet, which I probably should have been doing anyway, as the consequence of a bang to the head is potentially higher.

If there were no obvious provoking factors (eg immobility, illness, recent surgery), then he's likely to be recommended to continue some sort of anticoagulant treatment long term to prevent recurrence.

Once upon a time, we would do fancy clotting tests. Now we realise there's not much point: if someone's had an unprovoked blood clot (DVT or PE) there's a 25% chance of recurrence in the next 3 years.  So we just recommend long term anticoagulation.

Obvs healthy lifestyle etc are important too.  Quitting smoking is always recommended.

I'm on warfarin because rivaroxaban didn't work - my leg (which contained the "original" DVT) reclotted.  In my case they think it's because I'm quite big and heavy and there isn't scope to vary the dose of NOAC/DOACs (but there is with warfarin) but it could be other reasons.

I'm now down to testing every 6 weeks and my INR has tested stable at 2.3 for months (on what is a quite high dose - 4 x 10mg and 3 x 9mg a week, FWIW).  Which can vary between people depending on consistency of e.g. diet; some people never quite stabilise.

In some ways I prefer warfarin as it doesn't give me any side effects at all, rivaroxaban seemed to give me mild itching in the few hours after taking it.  I reduced the annoyance of that by taking it just before bed and sleeping through it, but it wasn't nice per-se.  It's also a very well known and well understood drug as it's been in use for something like 50-odd years, so there are unlikely to be any possible future surprises.

Clots can be caused by all sorts of things, there was no suggestion at all in my case of it being lifestyle related, though we can't quite confirm what.  I suspect it was due to damage caused in a serious bike accident in my 20s as I've had issues with my right leg ever since, which the consultant thought plausible but not provable.  I was treated for DVT about 5 years ago with rivaroxaban, but if it didn't work this time it possibly didn't clear it fully last time either.

The other potential factor in mine, again not something they'd really dig into but plausibly relevant, is a low resting heart rate (in the 40s) which combined with being tall could mean very slow blood flow in my extremities, plus as I do IT I have a sedentary job, put all that together and...

Ta, there's no question of changing him off warfarin, just wondered why he'd never been moved onto the newer ones that don't need regular testing.

And you're right about the irregular, used to get AF (aren't I lucky to inherit that) and has had a pacemaker for many years.

Aah, interesting. He's rather tall (6 foot 6 I guess), and has had long spells of being sedentary, sometimes due to mental health and lounging about playing computer games (months or more, but my memory fades when I try and remember if it was years long at times). 

Would you say that it's one of those thing where the cause doesn't have to be lifestyle related, but that once they arrive lifestyle (and diet) can be what one needs to think about to keep them at bay?

It's good to hear from somebody who has had them, and gone on to be fine.

Sort of.  There was never a big thing made of that other than a suggestion that I need to lose weight (and I do, and am doing) - the main driver behind that was that I might be able to try NOAC/DOACs instead when a bit lighter, but not only that, apparently the pressure on the veins from carrying fat on the upper legs can slow blood flow.

That said my lifestyle isn't that terrible, I just eat too much, not necessarily of "bad" foods, and I don't smoke and never did, never appealed to me.  Alcohol consumption isn't really a risk factor as alcohol thins the blood slightly if anything (though not massively, the main reason for it having an effect when on warfarin is that it slows the elimination of that).

I do have an element of post-thrombotic syndrome in my right leg, possibly because it's a second clot.  This is caused by damage to the "return valves" in the vein caused by the pressure built up behind the DVT when it's there.  This means it can get uncomfortable if sat down all day so it does force me to go out for a lunchtime walk!

PEs near enough always come from breaking off a DVT, the blood is generally moving quickly through the lungs even with a low heart rate so they tend not to form there unless there are really extenuating circumstances (e.g. COVID or one of the hypercoagulability syndromes).  It might be that his DVT is asymptomatic, in which case good, as mine was really very painful once it got big enough and there is still a bit of permanent swelling in my right calf and ankle (though people don't notice until I point it out even though I'm a near full-time shorts wearer).

They're not disastrous overall.  PE has a 30% fatality rate untreated which is slightly sobering (DVTs don't kill people, only if they break off and become PEs), but that is slightly misleading on its own, partly because people do tend to get them treated, and partly because it's skewed by age.  It's also impossible for a DVT to cause a stroke directly unless you have a hole in your heart, which is reassuring - it can't get past the lungs and so can't get to the brain.

What is interesting with me is how long it may have been going on for.  I've had breathing issues since I dropped out of Lakes in a Day in 2017 after failing to get up Helvellyn with what felt like an asthma attack, and I was diagnosed with asthma after that.  I do indeed have a bit of very mild asthma probably brought on by chronic acid reflux* so inhaler use ekes out a bit of extra performance, but after several months of warfarin and a rescan confirming the lung clots have gone (they don't rescan for DVTs) my breathing is pretty much back where it was pre 2017.  Which is good now, but does mean I was potentially walking round with undiagnosed DVT and PE for about 3 years - slightly sobering!  I did have a scan back in 2017 but they didn't see anything, but it's possible they missed it - when you look at the pictures it is not particularly easy to see.

FWIW I was only admitted inpatient for 3 days and often they don't bother at all.  With me the admission was because my body had whacked my blood pressure right up to compensate for the lack of oxygen getting to organs, 180 over something, and they were concerned about stroke risk from that (so the opposite of a clot! ) so wanted to keep an eye on me.  If this doesn't happen admission isn't a given.  It dropped very quickly once anticoagulation (initially heparin) was started.

With regard to warfarin when my leg reclotted on the rivaroxaban I wasn't too happy about it for a few reasons - partly it sounds really nasty (but isn't meant to - WARF refers to the Wisconsin Alumni Research Foundation and "arin" is just a coumarin, that type of medication, though I bet they did think it sounded cool) but also because of the lifestyle stuff.  However I have found most of the rumoured stuff isn't really true...

Rumour: you have to treat yourself as really breakable and stop doing anything slightly risky e.g. climbing or cycling (if you look at any of the "survivor's" sites you will see lots of this)

Truth: you are at slightly elevated risk and are well advised to get checked out if you get a bang to the head, and may wish to consider increased helmet use (I do now always wear a cycle helmet, I sometimes didn't before, and I'll wear a climbing helmet more than before too - but these are all generally prudent anyway).  Playing rugby or heading the ball at football would probably be ill advised, but my ball skills are terrible anyway.  Also, the only thing that seems to bleed a lot is razor nicks, so keep the styptic pencil to hand!

Rumour: you can't drink alcohol

Truth: you can, but if you have a really heavy night it can knock your INR up somewhat, so the thing to avoid is getting ratted to the point of falling over and banging your head (elevated INR + bang to the head = higher risk of internal bleeding and stroke).  Given the hangovers I get this is rather more alcohol than I ever choose to drink anyway, and provided you don't do it every night it will settle again.  But equally if you do drink a pint or two every night, that is consistent and so your dose will be set based on it.

The nurse said to me "the reason we don't like younger people being on warfarin is that they get drunk and fall over and bang their head" - quite a good way of putting it!

Rumour: you can take hardly any medication because it interacts

Truth: A lot does, but Dr Google is quite useful, or if it's confusing ask your GP

Rumour: you can't eat X, Y or Z

Truth: There are no banned foods, though supposedly cranberry juice is discouraged because it has an INR-raising effect.  For anything else you just need to be vaguely consistent, and if you binge on sprouts once a year your INR will soon work its way back to normal - indeed the Vitamin K which brings INR down might offset the increase from all the Christmas booze a bit!

Rumour: the test is a massive faff

Truth: many GPs now have a machine so it's 5 minutes with the nurse, or you can buy your own (though they are £500 so you probably don't need to!)  If your GP doesn't and you have a choice of surgeries (depending on catchments) it may be worth hunting round for one that does.

Though of course none of that applies to DOAC/NOACs if they are working.  If they are stick with them as it does slightly reduce the hassle and supposedly they have a slightly lower risk with regard to head injuries.

I mention INR a lot, it means International Normalised Ratio, and is the ratio of how long your blood takes to clot against how long it would in an average person.  So my last test had an INR of 2.3, which means my blood takes 2.3 times longer to clot than an average person.  My untreated INR was actually 0.9 which is maybe slightly contributory, though 0.9-1.1 is a normal range untreated.  NOAC/DOACs don't affect INR directly so the test is not relevant to those and any result may be misleading.  Injected heparin (which is what they start you on when you first go in for treatment) also doesn't affect INR but still anticoagulates - and is no fun at all because it feels like you've been thumped hard where you inject it for a while and you end up covered in bruises from the injections.

Oh, er, NOAC/DOAC = Noval Oral Anticoagulant / Direct-acting Oral Anticoagulant - rivaroxaban, apixaban, dabigatran and no doubt others I've not heard of.  All of them act in a less "blunt instrument" manner but in essence do the same thing. 

* I tried taking over the counter PPIs for that and it did bring slight improvement, but unfortunately for me they cause massive rapid weight gain (a known but poorly understood side effect) so they are not an option for me.  Unfortunately ranitidine, the other option, makes me really itchy, so I'm left with Gaviscon and occasional blue inhaler use.

Every day's a learning day - the Wisconsin Alumni Research Foundation I had never heard of! Thanks  

Re the asthma, occasional blue inhaler usage is definitely discouraged these days. Strong evidence for the use of one of the combined inhalers (symbicort, vannair, Duoresp Spiromax or whatever bonkers name they are running with this month). Basically, the inhaler needs to contain a mixture of budesonide and eformoterol and you just use it when you feel you need it. As needed ventolin in asthma is unfortunately well shown to be associated with worse asthma outcomes and higher risk of hospital visits and severe illness. Might be worth having a chat with your GP about it - the key words being "anti-inflammatory releiver therapy" or "Smart therapy".

good luck

b

Interesting, thanks, I will have to discuss that at my next asthma review.

Um, I think you've sort of got it a bit confused.

Occasional salbutamol use is fine. Regular, frequent salbutamol usage is not fine, because that means your asthma is badly controlled.

We still prescribe salbutamol (aka Ventolin) to be used when required.  But we know that if people need to use salbutamol frequently (more than 3 times /week), that's an indicator that their asthma is poorly controlled --> increased risk of asthma attacks, being so unwell you need hospital admission, and also increased risk of dying due to asthma.

So we are keen to optimise the "preventer" treatment (the inhaler that you use morning & night, every single day) so that people hardly ever need to use their salbutamol.  The ideal scenario is that the salbutamol lives in your pocket and reaches its expiry date before you've used it up, but you've got it on hand just in case.

Sometimes we use MART (maintenance and reliever therapy - using one of the combined inhalers) to achieve this, but not always - it depends on the patient.  Sometimes they just need a clear explanation of why using their Pulmicort inhaler (steroid only) every day is so important, and what we're trying to achieve with treatment.

It turns out he may be allowed to leave within the next couple of days now, which is welcome.

Good stuff, hope he recovers as soon as possible (though it can take some time, he'll probably notice continued improvements over a few months).

His girlfriend has just posted on facebook about improving her health, re diet and exercise, I reckon he'll be living with her for a while, until he moves out (they only really moved in together because of lockdown, towards keeping one another cheerier). Possibly he'll have nowhere to turn, his girlfriend keeping him healthier and his oldest friend asking if he is being.

Ben B is in NZ? It could be different there. My wife is a US physician and final year HemOnc fellow (Internal Medicine residency completed) and is often surprised by differences in treatment between the US and UK.

Ask him what medication has recently been administered, clotting may be a result of vaccination for covid 19 

Iain is right, there are some differences between NZ and UK practice. The majority of specialist societies and guidelines published internationally now reflect the updated GINA (Global Initiative for Asthma) 2021 quidance, though the trickle-through to everyday practice can be slow. The 2019 BTS/SIGN guidance in the UK is out-of-date - occasional  ventolin (salbutamol) should no longer considered "fine" (in asthma - the evidence is different for COPD).

"For safety, GINA no longer recommends treatment of asthma in adults and adolescents with [ventolin] alone. All adults and adolescents should receive ICS-containing controller [i.e. symbicort, vannair] treatment to reduce their risk of serious exacerbations and to control symptoms. "

Because the combination inhaler is not licensed for asthma in the US, hardly anyone in the US (relatively speaking) goes down this route despite the strong and consistent evidence base.

For further reading, Richard Beasley's studies from the Wellington group are a good place to start if anyone is interested in the science. Asthma is a variable condition with fluctuations over time, and the move to "permit" people to tailor their inhaler use to their requirements, is increasingly a model involving engagement ahead of "being told what to do because we know best". Having said which, I have plenty of people under my care on fixed dose regimes because they prefer them, or other circumstances where once daily supervised dosing makes more sense (e.g. in people with memory issues). 

As ever there isn't a one size fits all answer, but as needed AIR/MART is probably the closest we have for adults with asthma.

cheers

b

A specific type of clotting is, yes, of the AstraZeneca vaccine specifically, but it's very easily identified because it is very unusual in how it appears*.  Same with clotting from COVID itself.  If it was that type they would have identified it very easily from the CT scan they will have carried out to diagnose PE.

Either way it's of no relevance because the treatment is the same - anticoagulants.

The only time the treatment differs with clotting is that clot-dissolving medication will be used if and only if the clot is an immediate risk to life (or a limb's survival).  Most of them aren't, so anticoagulation is used as it poses a far lower risk.

* PEs form from a broken off piece of clot from a DVT, the AZ vaccine related clots were forming directly in very unusual places.  This would make them look very different on a scan.

You can reverse warfarin and it’s effects so elderly people at risk of falling and bumping their head are often kept on warfarin and those less likely are kept on the newer agents that are harder or not possible to reverse / block. 
PE is a funny old condition, we saw masses in Covid but they can hit people for no apparent reason. Generally, to avoid , keep active ,fit , ( consider need for OCP if female )  hydrated and avoid long periods ( 3 hours ) of leg rest in cramped environments ( cars etc) . 
treatment is based on ‘ provoked’ - a cause found , or un provoked - the latter generally had longer anticoagulant treatment. 
hope all goes well . 

Good to hear single inhaler use isn’t just a Christchurch trend! Our local Resp consultants very keen on it, calling it the biggest change in asthma management for decades. My (probably limited) understanding is that more recent evidence shows that it helps across all severities of asthma, not just mod-severe. I hope my understanding is correct as I’ve been enthusiastically switching all my asthmatic patients onto single inhaler therapy, maybe with the exception of those that use less than a single blue inhaler a year.

I like the simplicity of it: it’s rare to have a significant change in management that doesn’t make things more complex!

Absolutely no help whatsoever. Sincerely hope you're attempting to troll.

So far this thread was much better than I expected, professionals and Neil with first hand experience as a patient and a seemingly measured view of his treatment.

This is exactly why my advice initially was "Ignore anything on here" and until your post I was thankfully wrong.

I’m sure Lutz and Mike will be all over it like a flannel!

TBH even less than one salbutamol a year is probably still better with AIR. Novel-START trial pretty much nailed it. Good to see it’s getting out there more, delighted to hear you are on the wagon  

b