Hi everyone, I wanted to follow up on a post which I found really helpful from ETinNYC a few days ago regarding blood clots and whether fellow MPNers had experienced blood clots and many of you kindly shared your experiences. Following on from this, I was wondering if those of you who have experienced blood clots would mind sharing the symptoms you experienced?
The reason I am asking is because last weekend I had a trip to A & E to check for a clot in my lung due to a severe pain I was experiencing when I was breathing but thankfully clots were ruled out. The doc told me to come in at the first sign of any clots but what should we be looking out for? I have read the NHS info on clots they gave me but always good to hear from fellow MPN ers.
I am 47 years old JAK2 positive and diagnosed 2 years ago and always happy to learn as am hoping to be living a long time with this!
Many thanks.
Written by
Lola367
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What a good question. My MPN was diagnosed when both my lungs were discovered to have multiple clots in each. My symptoms were an inability to breath & articulate. The sounds I made seemed more like a stroke. Two years earlier I was asymptomatic with PE’s. Later I had 1-2 more episodes both of which presented with shortness of breath but not extremely so. Many clots originate in legs & then travel to organs. . Sometimes clots in legs cause swelling, pink or reddish color & pain. But I don’t know if clots going to your heart or brain have symptoms before causing a stroke or heat attack. I was put on blood thinners after my episode of not being able to breath. This would be a good topic for a program.
Hi - I was diagnosed with Myelofibrosis in July 2021. On the 24th August I tripped and injured my arm. It was about 8pm and we were still under Covid restrictions. My husband took me to A&E where he had to leave me. I had X-rays done.
After a couple of hours a very harassed doctor told me I had broken my arm - but it was the bank holiday weekend and there wasn’t a fracture clinic until the 31st. She gave me a sling and told me to go home and stay as immobile as possible.
I was in severe pain so I went home and took to my bed. Four days later I got up to sit in the armchair and watch TV. After a couple of hours I began to feel a deep pain in my chest. I also wondered what a blood clot felt like….
I rang 111 who quickly referred me to 999. They said they would dispatch an ambulance - which arrived after 40 minutes. I had multiple pulmonary embolisms. I was admitted, treated with blood thinners and discharged after 4 days.
After 2 months I was told I had a broken shoulder and needed a replacement- which I finally got after 6 months.
I remain on a low dose of Apixabam. I attribute the embolisms to being told not to move and I’ve had no further episodes.
I apologised to the paramedics - as you do- in case I was wasting their time. They’d googled Myelofibrosis and were thrilled to be meeting a 1 in 300,000 patient! They told me I must never hesitate to ring 999 if I have any unusual pain or symptoms.
sorry to hear about what happened, my golden rule is keep moving and keep the blood pumping. The problem is of course the shoulder doc likely didn’t understand your MPN issues ie increased risk of clot.
Thank you so much for sharing this katiewalsh and sorry to hear you have experienced clots in your lungs. If you don't mind me asking, what kind of tests / scans did you have to have to confirm the clots? I agree it would be a really good topic for one of the MPN Voice webinars.
I've never had a clot but did want to reply that the symptoms one experiences will vary greatly because it depends on where the clot is located (ie lungs, heart, leg, etc)
I had scans in the hospital. I think although I am more at risk because of the Myelofibrosis it was the inactivity that caused the clots. I had two lots of surgery connected with the shoulder and I just stopped the blood thinners two days before. I had no trouble with the surgery.
I have had general breathlessness over a period of 5 years plus but usually associated with chest infections which, in my case always linger. In Oct 21, I was put on steroids for about 5 months during which I felt awful and recognise now I did not move enough. I did odd things around the house but basically moved from chair to bed (Can't believe now I was so stupid.)
My coughing/chest improved so the steroids finished around the beginning of March, 22 and I began to feel better but in mid April, I had pains in my chest. I went to A and E and after 4 hours saw a doctor who finished up giving me morphine (wonderful!) and arranging a scan which showed clots in both lungs.
Further scans show the clots have gone but I remain on daily aspirin (75mg) and 20 mg rivaroxaban. The breathlessness remained so the chest consultant recommended inhalers (preventive and treatment) to be used daily. I continued to feel awful but no pain, and felt the inhalers made matters worse not better. The consultant then suggested a different inhaler and increased the dose. After trying them for a very short time, I decided - on my own initiative- to discontinue their use and have felt better ever since.
I had drawn the chest consultant's attention to my MPN status and she was aware I was taking HU. There was no mention of either in letters sent subsequently. My haem has been very supportive - she listened to me! - and has reduced my daily dose of HU from 1,000 to 1,000 one day and 500 the next. I feel so much better with the breathlessness much reduced. This, I suspect but cannot prove, is because of discontinuing the inhalers and reducing (albeit by very little) the HU.
I am due to see the chest consultant in Aug when I will have to account for ignoring her advice. I am incredibly embarrassed by this but unrepentant. I have written such a long post hoping it will help people to realise the importance of 'moving' when given steroids. I cannot believe I was so stupid. Sallie
Hi Sallie, thanks for sharing your experience, it sounds like you have been through the mill but glad you are feeling better. Best of luck for your appt.
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