multiple blood clots in lungs

[Digger031145]

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

[Digger031145]

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

[Alberta56]

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

[Digger031145 in reply to Alberta56]

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 Digger031145]

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.

[Digger031145 in reply to CDPO16]

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

[Digger031145]

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

[Digger031145]

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

[garshe in reply to Digger031145]

£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

[Digger031145 in reply to garshe]

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 Digger031145]

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

[garshe in reply to Digger031145]

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 🤞👍

[Digger031145 in reply to garshe]

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 garshe]

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

[Digger031145 in reply to Izb1]

I agree it must be Sheila’s area.

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

[Izb1 in reply to Digger031145]

Same here in Manchester x

[CDPO16 in reply to Izb1]

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.

[Digger031145 in reply to CDPO16]

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 Digger031145]

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 Digger031145]

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 Izb1]

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 🤞👍⚘💕

[Digger031145 in reply to garshe]

Lucy you

[garshe in reply to Digger031145]

👍👍💕⚘

[Izb1 in reply to garshe]

Think I will move to Wales lol x

[Digger031145 in reply to Izb1]

Me too. Likely to live longer under their fabulous NHS

[garshe in reply to Izb1]

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 garshe]

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

[CDPO16 in reply to Digger031145]

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

[Digger031145 in reply to CDPO16]

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

[CDPO16 in reply to Digger031145]

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

[Digger031145 in reply to CDPO16]

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

[Izb1 in reply to Digger031145]

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

[Digger031145 in reply to Izb1]

what did you have wrong with you???

[Izb1 in reply to Digger031145]

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

[Digger031145 in reply to Izb1]

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

What area do you live?

[Izb1 in reply to Digger031145]

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

[Digger031145 in reply to CDPO16]

no choice unfortunately

[CDPO16 in reply to Digger031145]

Sorry about that.

[theomus in reply to garshe]

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.

[Digger031145 in reply to theomus]

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 Digger031145]

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.

[Digger031145 in reply to theomus]

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

[garshe in reply to theomus]

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 theomus]

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

[mar4nur in reply to Digger031145]

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 mar4nur]

And me xxSheila 🤞👍⚘💕

[Digger031145 in reply to garshe]

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

[garshe in reply to Digger031145]

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 💕⚘

[Digger031145 in reply to mar4nur]

this was the consultant himself who phoned me not his secretary

[Digger031145 in reply to mar4nur]

is that private or nhs ?

[Tia4209]

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.

[Digger031145 in reply to Tia4209]

which fb group is good with this type of problem?

[Tia4209 in reply to Digger031145]

Pulmonary Embolism Support Group.

[Digger031145 in reply to Tia4209]

Tia thank you very much x

[Tia4209 in reply to Digger031145]

You are welcome

[Digger031145 in reply to Tia4209]

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

[powderpuff]

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?

[Digger031145 in reply to powderpuff]

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

[K2a4n805]

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!

[Digger031145 in reply to K2a4n805]

was it a VQ scan that showed them?

[K2a4n805 in reply to Digger031145]

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

[Digger031145]

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

[Digger031145]

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 Digger031145]

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

[Digger031145]

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?

[Digger031145]

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

[Miles62]

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

[Digger031145 in reply to Miles62]

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.

[Digger031145]

did you have multiple clots?

If so how long did it take to get better?

[Miles62]

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

[Digger031145 in reply to Miles62]

were you unwell before the pneumonia?

[Miles62]

no I walked about 2 1/2 hours a day

[Digger031145 in reply to Miles62]

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

[Miles62]

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

[Digger031145]

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

[Digger031145]

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