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multiple blood clots in lungs

2 months ago•85 Replies

I was diagnosed with multiple blood clots in my lungs in December. I’ve been put on Rivaoxaban.

When I started it i was told by my cardiologist consultant that I would be breathing much better after 8 weeks. But I’ve been in it 10 weeks now and still my breathing is no better.

Can anyone tell me how long it can realistically take to dissolve these clots and get my breathing better.???

I also have constant upper back pain - nit spinal - feels more muscular which I’ve had for a long time & I’ve just read that blood clots can cause back pain/ache

Any help please

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130396

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catgirls19762 months ago

Your body will dissolve the clots over time now you are on your treatment.

I went through this back in 2017 and physically I felt better after starting the treatment quite quickly but everyone is different.

130396 in reply to catgirls19762 months ago

Hi Catgirl

Was your breathing bad ?

My consultant said I’d be breathing much better after 8 weeks but it’s now 10 weeks and breathing still the same.

I’m worried as I’ve had this trouble breathing for at least 3 years so thinking my blood clots may be solid

catgirls1976 in reply to 1303962 months ago

Not after I had started my treatment it wasn't as it got better in a few days.

130396 in reply to catgirls19762 months ago

you must’ve only just got them then as I’ve been taking my Rivaoxaban for 10 weeks now and no improvements

Alberta562 months ago

Only your doctor can help you with this. I'd suggest you ring your consultant's secretary.

130396 in reply to Alberta562 months ago

my dr said should be breathing much better in 8 weeks - it’s now -10 weeks with no improvement .

I was hoping that someone who’d be in the sane position could reply

CDPO16 in reply to 1303962 months ago

As Alberta said, the best course of action would be to phone your consultants secretary and voice your concerns to her. She can pass the information onto your specialist.

130396 in reply to CDPO162 months ago

I’ve got a follow up private appointment booked for March

1303962 months ago

it costs £180 a phone call and so I’ll have to wait until I see him in mid March

garshe in reply to 1303962 months ago

£180 for a phone call ???? I ring my husband's and my Consultants secretary also e.mail them and it's a normal phone call charge. I can see you are in UK also so why is that price xSheila

130396 in reply to garshe2 months ago

that’s what I got charged for a 4 minute phone call when he phoned to tell me the results of the scan.

Tykelady in reply to 1303962 months ago

You were charged £180 when he phoned you? I would look into that.

garshe in reply to 1303962 months ago

You obviously see your Consultant Privately I find the NHS fantastic and the Respiratory team who work with the Consultant also fantastic. I can call them anytime for advice and they even come to my house if needed. They sort my medication with my GP if any problems. Taking the stress out of everything. And all FREE.

I can also get to speak to my Gp as long as I phone 8.30am -11.am and he or she will call me back. I don't usually go thro GP as prefer my Respiratory team as specialize in COPD.

I live in South Wales, UK. And am very happy with the service I get Free.

Hope you get your results soon.

xxSheila 🤞👍

130396 in reply to garshe2 months ago

my respiratory team on nhs were rubbish!!!

Was seeing them for over a year and they said I was breathless because I’d put in weight over lockdown.

My gut was telling me to look further so it was a private cardiologist who did the relevant scan abd hence results were multiple blood clots in both lungs

So for me the nhs team were not doing their job and let me down badly

Izb1 in reply to garshe2 months ago

You are very lucky with your care Sheila, I dont know anybody who has this level of attention and think it must be because you are in Wales. The husband of one of my neighbours has really bad copd and look's near to deaths door and has to struggle out to the gp and hospital with virtually no home care. Shame it isnt the same for all area's but make the most of it while you can x

130396 in reply to Izb12 months ago

I agree it must be Sheila’s area.

I’m in West Sussex and the care hete is abysmal

Izb1 in reply to 1303962 months ago

Same here in Manchester x

CDPO16 in reply to Izb12 months ago

I agree Irene. I have a lot of support but nowhere near the level of care Sheila has. I've commented to her before how fortunate she is.

130396 in reply to CDPO162 months ago

I don’t have any support that’s why I had to go private.

My surgery offered me inhalers that’s it and the hospital were absolutely awful

Jaybird19 in reply to 1303962 months ago

hospitals vary . i have two at nearly same distance away . worked at one in 70.s and stayed two years. in that time changed what i could but now have to go there reluctantly if ambulance is involved .i moved to the other half a mile further away to work for l amost 25 years and was there as patient too. i always ask to go there but to no avail .

i see lung consultants there for many years but presest one is not informative and which i am not happy about , he is cjust doging around , cannot sit still while talking and n just offers different inhaler every time i go . i went to manchester where i went through a number of tests much more thorough. then had scan b in august but heard no more so asked secretary here to sort that for me and in meantime he offered me a consultation on the manchester scan but said that he couldnt comment on the scan done there in manchester as he hadnt done it hinmself !! so i cancelled it ansd asked to go back to manchester to see consultant there !

JetJet in reply to 1303962 months ago

Now that you have a diagnosis I would ask your GP to refer you to relevant NHS department then you will able to seek support going forwards without having to pay if this is unaffordable.

garshe in reply to Izb12 months ago

Yes I am fortunate. I have two teams. Respiratory team and a new one The Copd Team . My nebuliser broke so they brought me a new one to the house.. they speak to me every week just to check and I can contact them Mon -friday between 8.30am-4 pm . Its brilliant they also work with my Consultant really fab. xxSheila 🤞👍⚘💕

130396 in reply to garshe2 months ago

Lucy you

garshe in reply to 1303962 months ago

👍👍💕⚘

Izb1 in reply to garshe2 months ago

Think I will move to Wales lol x

130396 in reply to Izb12 months ago

Me too. Likely to live longer under their fabulous NHS

garshe in reply to Izb12 months ago

You're Welcome. Cymru am Byth.Love to have you as a neighbour and I'll introduce you to my Respiritory Team lol 🤣🤣🤣👍⚘💕

Izb1 in reply to garshe2 months ago

You just never know, my daughter lives in Pontcanna and is a lovely part of Wales x

catgirls1976 in reply to Izb12 months ago

Yes I know Pontcanna and the Cathedral Road area very well!

CDPO16 in reply to 1303962 months ago

The cost of that call should be his if he phoned you

130396 in reply to CDPO162 months ago

he did phone me so he’s charged me for it .

CDPO16 in reply to 1303962 months ago

So it was considered to be a consultation. Makes sense if you are being treated privately.

130396 in reply to CDPO162 months ago

I had to go private as nhs consultants discharged me. Now using my overdraft to pay for it

Izb1 in reply to 1303962 months ago

I was discharged by the hospital consultant, saying there was nothing more they could do for me. If I have any future problems I will go back to my gp and ask him to refer me to a bronch specialist at a different hospital as the one I had was pretty useless x

130396 in reply to Izb12 months ago

what did you have wrong with you???

Izb1 in reply to 1303962 months ago

I have bronchiectasis and rheumatoid arthritis. I had severe infections in all my sinus's after a bad cold, at the time I didnt know what was wrong with me. I had an over production of mucus which was choking and a terrible cough. After seeing my gp and the consultant for well over 12 months I was finally sent to ent and a ct scan showed up the infections, 6 weeks on a low dose antibiotic helped but by then i needed a sinus op, that took 2 years and the surgeon messed that up by putting a hole in my septum. I could go on but wont, needless to say i dont have a very good opinion about the nhs and have learned to speak my mind. Littlepom is a staunch supporter of us bronchs and tells us what to do and was one of my first contacts on the site and she is right in saying find a specialist in your area and tell the gp to refer you. Its the only way to get the correct treatment x

130396 in reply to Izb12 months ago

so you don’t have blood clots in your lungs?

What area do you live?

Izb1 in reply to 1303962 months ago

Sorry no I dont have blood clots and live in Manchester x

130396 in reply to CDPO162 months ago

no choice unfortunately

CDPO16 in reply to 1303962 months ago

Sorry about that.

theomus in reply to garshe2 months ago

Garshe, I think the £180 must have been his charge for a telephone consultation, not for a simple call. Please ring his secretary and ask for a face-to-face appointment.

130396 in reply to theomus2 months ago

I’m seeing him in March.

I do think he must’ve charged for a telephone consultation although it was only 4 minutes whilst I was driving to work

theomus in reply to 1303962 months ago

If your next consultation is just a few days away, perhaps it's not worth changing it, but, if your appointment is later in the month, you could ask for it to be brought forward.

In any case, you should certainly query the amount charged: £180 would be rather expensive, even for a standard face-to-face appointment, but for a 4-minute telephone consultation it would be excessive. I hope it's just a clerical error.

130396 in reply to theomus2 months ago

it’s £250 for face to face. My appointment is booked for March 15th

garshe in reply to theomus2 months ago

Must have been .I am happy with the NHS service and cant complain. Just had cataract OP on NHS also. xxSheila ⚘💕

garshe in reply to theomus2 months ago

Yes I worked that one out. Ridiculous isnt it. xxSheila 💕💕

mar4nur in reply to 1303962 months ago

wow £180 . I,m in the uk and it doesn't cost me that amount. It only costs me the normal charge to phone my respiratory consultants secretary.

garshe in reply to mar4nur2 months ago

And me xxSheila 🤞👍⚘💕

130396 in reply to garshe2 months ago

is that private? And it was consultant who phoned me not secretary

garshe in reply to 1303962 months ago

Sorry is what Private. ??Well Private Consultations cost a fortune. It shouldn't be as they are the same ones who also work for the NHS.

I suppose you pay for their time as with NHS you get limited time. But I have always been really happy with my treatment. Even during Lockdown they called to my house . You should move to Wales lol. Only kidding.

I hope you get the results soon and the necessary treatment as this waiting must cause you stress and anxiety.

Sending love Sheila xx 💕⚘

130396 in reply to mar4nur2 months ago

this was the consultant himself who phoned me not his secretary

130396 in reply to mar4nur2 months ago

is that private or nhs ?

Tia42092 months ago

When I had blood clots, I was told it would take.6 months for everything to improve. There are some good support groups on Facebook, some people in the group that I am a member of, have said it can take up to two years to feel back to a pre clot state.

130396 in reply to Tia42092 months ago

which fb group is good with this type of problem?

Tia4209 in reply to 1303962 months ago

Pulmonary Embolism Support Group.

130396 in reply to Tia42092 months ago

Tia thank you very much x

Tia4209 in reply to 1303962 months ago

You are welcome

130396 in reply to Tia42092 months ago

I’ve requested to join one bit thetr were several listed so hope it’s the right one x

powderpuff in reply to 1303962 months ago

Haematology directed me here but there are many good online resources which might be useful to you. I also find the latest NICE guidance can be helpful in as much as you can understand diagnostic criteria & recommended treatments.

thrombosisuk.org/

130396 in reply to powderpuff2 months ago

I’ve looked at the link but don’t understand how it works

catgirls1976 in reply to Tia42092 months ago

When I was on the respiratory ward back in 2017 there was myself and another patient who was my age called Emma and the consultant had said to us full recovery on average is 6 months.

I am still friends with Emma now as she lives nearby and we meet regularly.

130396 in reply to catgirls19762 months ago

Did you have multiple blood clots? I’ve a feeling mine must be quite old and building up as my breathlessness started about 3 years agob

Can you breathe ok now? Did you ever have upper back pain between shoulder blades?

catgirls1976 in reply to 1303962 months ago

Yes I did have upper back pain before I got put on treatment and my breathing is fine now.

powderpuff2 months ago

While you would hope to see the start of improvement in that timescale, it would be optimistic to expect full recovery. After a clotting event last March, I was told 6 to 10 months. Recovery is obviously dependant on your unique situation & how the clotting event might have affected anything else. Are you in touch with any respiratory specialist or receiving any anticoagulant support?

130396 in reply to powderpuff2 months ago

the respiratory consultant who did the Ct scans said my breathlessness was due to putting on weight - haha just a stone over lockdown and I’m not big anyway.

So I ended up being diagnosed by a cardiologist who did the VQ scan. Which showed multiple clots in both lungs

powderpuff in reply to 1303962 months ago

So not a CT Angiogram with injected contrast? These show more detail & not just x sections & more than likely would have confirmed the clots.

The cardiologist is private? In you’re position I’d try to get referred back to the the NHS taking the evidence you’ve accumulated so far. I’m under the care of a Haematologist for on going care but other disciplines have been involved during the course of treatment-it’s a bottomless pit which might prove hideously expensive.

130396 in reply to powderpuff2 months ago

I had a normal Ct scan with & without contrast.

I then had an angiogram without contrast. Neither showed these multiple clots.

I don’t trust the nhs now after letting me down so badly

My consultant said I was a ticking time bomb

powderpuff in reply to 1303962 months ago

What if anything was going on with your health prior to the clots? Chest infections, pleurisy? How is the cardiologist explaining the clots or are they ‘unprovoked’?

130396 in reply to powderpuff2 months ago

I am assuming my clots have been caused by my high platelets as I have ET JAK2+.

I had pneumonia 27 years ago but that’s it. Hypothyroid but that doesn’t cause clots

powderpuff in reply to 1303962 months ago

So presumably you have Haemy care anyway? Blood clots seem to be indicated with your condition if platelets are unstable.

K2a4n8052 months ago

I too was diagnosed with multiple blood clots in lungs in December. I was put on APIXABAN and was told I would need to be reviewed in 3 months. I’m still getting chest pain, am slightly breathless but not just as bad as in December. Nobody seems to know what caused them!

130396 in reply to K2a4n8052 months ago

was it a VQ scan that showed them?

K2a4n805 in reply to 1303962 months ago

I think it was. I had so many tests, scans and xrays I lost count! Just hoping everything settles down soon.

Miles622 months ago

Hi.. I also had multiple blood clots but it was not diagnosed for several days when i got a CT scan. When I was admitted they said my lungs were lit up like a christmas tree but yet I did not have covid. The Drs. were very suprised I was very sick. I was not getting better and they did not know why after having several ultra sounds of my Heart and and xrays of my lungs. Thats when i was finally given a CT scan. They gave be several shots in my stomach of a blood thinner before putting me on Rivaoxaban as you have been. said it would be for 6 months and then another CT scan. I will get it in mid March. They sent me home on oxygen 16 hours a day for about a month I believe. Still have a oxygenator I bought I very seldom use it now. My lung and Heart Drs. told me after about 2 months to walk as i could. Get out in the fresh air and watch my oxy with a finger pulse oxy meter and seeing them 1 once a month. after about 4 months things started improving and the last month improved a lot. I walk alot which they said to just watch my oxy meter and rest if it went below 88%. which sometimes i would get out of breath and it would be at 84% but would come back up above 88% fairly quickly. They said i needed to work my lungs. My last appointment a week ago I was at 96% with a finger pulse meter . My heart Dr says if my CT scan comes out good next month i will stop the Rivaoxaban, I hope this helps. I never have had anything like this and when it hit it hit hard but i waited to long to go to the hospital. I always thought all I needed to do was work out harder which was the oppisite of what i should of done. I know this is long but i wanted to tell you exactly how i have done. I hope you will be the same after a while it will start to get better fairly quickly. They always told me the plan was for 6 months and then see where i was. Best of luck to you hope all works out. May Yahweh Heal you and Bless your Health

catgirls1976 in reply to Miles622 months ago

Originally when I started feeling unwell I thought I was unfit and needed to go on a diet but no I didn't as I was poorly!

130396 in reply to catgirls19762 months ago

did you have multiple clots?

If so how long did it take to get better?

catgirls1976 in reply to 1303962 months ago

At a and e they said to me I had clots in both lungs and they were keeping me in overnight to keep an eye on me!

Physically I started feeling better a few days after I had started my treatment and asked about what exercise was safe to do just before I left the ward and they said walking in great but to stop if I felt unwell or puffed out.

130396 in reply to catgirls19762 months ago

your clots must’ve been in early stages. I suspect mine started forming 3? Years ago

130396 in reply to Miles622 months ago

thank you.

Had you had your blood clots long as I think I must’ve had them building up for 3 urease when my breathing started getting worse.

Miles622 months ago

I don't know I came down with pneumonia and could not breathe and very weak or walk very far. Finally went to the ER and was admitted. They said i was really bad and spent 3 or 4 days in ICU they could not figure out why I was not doing better untill they did the CT scan with dye and said i was full of small blood clots in my lungs. After the shots in my stomach i went home soon afterwords

130396 in reply to Miles622 months ago

were you unwell before the pneumonia?

Miles622 months ago

no I walked about 2 1/2 hours a day

130396 in reply to Miles622 months ago

I walk a lot through the day too about 13,000 steps

Miles622 months ago

I would say you were doing about the same as me. Hopefully in a couple more months you will see a big improvement about the end of the 3rd month beginning of the 4th month my oxy level started rising and i started getting better

1303962 months ago

I’ve no idea how long I’ve had clots though could be 3 years or more as my breathing started deteriorating that long ago

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