clotting whilst on warfarin for clots in lungs.

[Digger031145]

I’ve been trying to find out why I’ve had breathlessness for 3 years.

In 2021 NHS pulmonary consultant arranged Ct scan abd lung function tests. Lung function tests results said good.

Ct scan revealed very mild dry bronchiectasis and very mild emphysema - both too mild to be classed as COPD.

Was discharged from hospital as they concluded that my breathing problem was caused by 2.5kg weight gain through lockdown and de conditioning through lockdown.

This didn’t sit right with me so I paid to see private cardiologist. He did various heart tests and sent me for VQ scan.

He got results back same day of the scan. He phoned & told me I had multiple blood clots in both lungs and put me on Rivaoxaban. After 4 months I saw him again and because my breathing was no better he arranged another VQ scan .

This showed even more clots & bigger ones so I was put on warfarin. So far I’d spent almost 3k on consultations and the tests that I hadn’t have done privately.

I asked my Gp to send me for a second opinion to a pulmonologist at a different hospital.

I saw a new consultant at a different hospital who arranged a CTPA scan with contrast which I had in October last year.

2 weeks ago I received the results and was very shocked by the letter.

In the letter he said I was being referred to Royal Brompton Hospital as it seems I am still clotting even though on warfarin and my doses of Hydroxycarbamide have been increased to get my platelets under rangev now 346.

3 days after I got his letter I had a phone call from Brompton giving me an appointment for 1st March.

Today I’ve had to have a special blood test called an APS test which has to go to London for testing.

From the letter it’s saying the blood clots have caused pulmonary hypertension

@MazD

[hunter5582]

Sorry to hear that you are having such significant struggles with thrombosis. You were very wise to pay attention to what your body was telling you. Your self-advocacy likely saved your life.

It sounds like you are on a path to finding a better treatment plan. It will be very important to ensure tight collaboration between pulmonology and your MPN care team. It will be essential to consult with a MPN Specialist who is familiar with treatment resistant thrombocytosis cases like what you are experiencing.

It sounds like you are an excellent advocate for yourself. As you have demonstrated, we must be able to take responsibility for ensuring we receive the care we need and able to serve as our own case managers.

Please do let us know how things are going as you travel this journey. What you are learning and doing to manage your care is an excellent example for all of us. Wishing you all the best as you move forward.

[Digger031145 in reply to hunter5582]

my haematologist team were the ones who arranged this special APS blood test that I had this morning.

It’s to see why I’m still clotting on warfarin !!!

It’s been courierd up to london for specialist testing but takes a month to get results

Thanks Hunter

[hunter5582 in reply to Digger031145]

Please do let us know what you learn. Meanwhile, you may find this of interest as you try to understand what is going on. It helps to have a basic understanding of Hemostasis - Coagulation Cascade, as well as the types of medications used to prevent thrombosis. This allows you to better understand the commentary from your care team.

youtube.com/watch?v=SGzp9wq...(Not working as expected?)

youtube.com/watch?v=1L5ztli...(Not working as expected?)

youtube.com/watch?v=4uPPPtf...(Not working as expected?)

[Dlaczego1948 in reply to hunter5582]

I have had blood clots on the lungs and am on hydro..... and on warfarin as well, I have regular warfarin checks and my blood range is between 2 to 3 . This has been the case for several years. I have Jak2. My platelets are up and down, the dose differs, I get tired and breathless as well.

[hunter5582 in reply to Dlaczego1948]

Sorry to hear about the ongoing struggles. I hope you have the opportunity to consult with a MPN Specialist given what you describe.