Chronic Thromboembolic Disease

[SparklyUnicorn2]

Hello I'm a newbie to this group👋.

Yesterday I was given a diagnosis of having Chronic Thromboembolic Disease(CTED). I don't really don't know much about it yet.Was wondering if anyone on here also has this condition?

Bit of background story.I was hospitalised Oct last year with extensive pulmonary embolisms on both my lungs. Since then I've been on Apixaban. Over the last year I've continued to have issues with breathlessness and fatigue.Had lots of tests done echos,lung function and most recent VQ scan. Last scan showed I still have extensive clots on my lungs that haven't dissolved and possible new ones.Going to be put on Warafarin and referred to Scotland's heart and lung centre.

All a bit overwhelming at the moment

[annienell]

Welcome to the forum! I can understand why you are feeling overwhelmed at the moment, but you've come to the right place for support and advice. I'm sorry I can't help with this, though some of our lovely members may be along shortly with more knowledge of your condition.

I suggest you call the BLF Helpline (03000 030 555) and speak to one of their expert nurses. I'm sure they will have advice for you.

Best wishes, Annienell

[SparklyUnicorn2 in reply to annienell]

Thank You🙂

[sassy59]

Welcome to the forum and hope you get some replies soon.

Take care xxxxx

[SparklyUnicorn2 in reply to sassy59]

Thank You🙂

[Shazrab]

Hi sparklyUnicorn what a great name . I understand what you’re going through I had a VQ scan that showed approximately 14 small blood clots in both lungs , my consultant didn’t believe the tests results as he put me on apixiban I got another VQ scan and had more blood clots this time about 20 there was rather a large debate going on regarding it all I won’t go into it all again as iv wrote a few long posts Reg it but maybe you could look back at my posts. I know how frightening this all can be , I was sent a letter telling me I had thrombotic lung disease and was to see a vascular surgeon but they changed their mind . I just wanted you to know I’m thinking of you and all goes well when you go to the heart & lung centre for in Scotland it’s ment to be one of the best hospitals. So try not to worry too much as you’ll be well looked after and maybe once you’ve seen the consultant there they might put your mind at rest . Good luck with everything and it would be great to see how you get on do please keep in touch . All the very best for your appointment, it’s easy for me to say don’t worry but it doesn’t help I’m doing said this to you . Please do as I do keep coming on and talking it does help when others can comfort you . Good luck 🌹🌹

[SparklyUnicorn2 in reply to Shazrab]

Thank You such much for your reply your words were very comforting.I'll definitely have a read over your previous posts❤

[Katinka46]

Hello SparklyUnicorn2 . I have CTED. Long story. I assume you are being referred to the pulmonary vascular disease unit in Glasgow? And that you have had tests for pulmonary hypertension? This usually shows on echos first and then the next test is right heart catheterisation. If you have CTEPH then there is an operation for that. Pulmonary endarterectomy, this only done at Papworth but they have an excellent success rate. I belong to a Facebook group for CTEPH. Would you be interested in that? If so I will private message you about it. Sorry, was that all a bit much?

It is a subject close to my heart, literally...

All the best

Kate x

[SparklyUnicorn2 in reply to Katinka46]

Hi Kate,

Thank you so much for replying. Wasn't too much at all,nice to know that someone else has what I'm experiencing.I know CTED is pretty rare so wasn't sure if anyone would know what I was talking about🙂

Yeah it's the Golden Jubilee I've been referred to just waiting for appointment. I've had 2 echos since being discharged last year and neither show signs of pulmonary hypertension although my CT scan did when I was originally admitted. I feel sometimes that I can feel my heart struggling especially when pushing buggy on an incline (I have a toddler &9yr old) which isn't great when I live at the top of a slope😏.

Yes I'd be interested in that Facebook group even though I don't have any diagnosis of CTEPH so far if that's allowed🙂

❤

[Katinka46]

Well I joined the UK CTEPH group but whether or not I have PH is a moot point. Echoes consistently show mild PH at rest but I believe that it shoots up on exercise, exacerbations and when I am asleep, (I know that’s weird, but I think it’s to do with the natural drop in oxygen sats during sleep). I will pm you about it. Looking forward to hearing how things go for you.

Kate xxx