MPN Voice
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Blood Clots

Hi I stubbed my toes last week as I got out of bed in the dark and forgot my suitcase was on the floor as I was flying off to Malta the next morning. It was soooo painful. Over the course of the week the pain in my foot became excruciating and I couldn't put any weight on it but after a few ibuprofen I was mobile again. Long story short, I then became really breathless. On my return to England I visited the doctors and they sent me to the hospital for some tests. I was diagnosed today with Multiple Pulmonary Embolisms, I have been put on Warfarin and Heparin injections and will be back at the hospital on Thursday for further treatment. I am totally devastated and shocked. I am on 1000mg of Hydroxycarbamide daily, and 1500 mg at weekends, also 75 mg aspirin (well not now). Has anyone else experienced similar on medication? I would love to hear what I might expect? Thank you x

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Had you had blood clots before you were diagnosed? I worry about flying causing a blood clot(dvt) so I don’t fly over 4 hours - on 10 hydrea a week and aspirin. Yours was caused by a toe knock !!!! Lucky you made it to hospital on time !!!!!!!

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Hi Mardi I have never had a blood clot in my life. I have flown regularly all my life, long haul, medium haul and short haul. I adore travel. I am only 59 and apart from the usual ET symptoms I experience from time to time I have always been fairly fit and active. Its early days at the moment but I do hope this doesn't scare me to change my way of life too much. I was scared to move in bed last night never mind travel LOL.

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Hi Mallard,

So sorry to hear of this news; must be a very worrying time for you. I hope that someone can reassure you in the questions that you ask.

It’s stories like yours that really highlight the seriousness of our conditions.

Wishing you well

Mary x

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Hi Mary thank you for your reply. Yes you are right it is a worrying time and my family are terrified. (not feeling too brave myself) I had to shout this morning "yes I am still here" when I woke up this morning lol. It's early days, hopefully I will be less afraid as time passes. I am still under Critical Care and have to inject myself with heparin in my stomach and take high doses of Warfarin for the time being. I also have to take it easy and not get breathless so good excuse to catch up on all those movies and box sets I've been meaning to get around to.

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HI Mallard, I am sorry to hear this, I hope you feel better soon, take care of yourself. Maz x

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Thanks Maz x

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Hi Mallard. Oh my goodness . I read your post and was shocked that something so simple as stubbing your toe could result in something so serious. Just goes to show how careful we need to be and not to ignore any unusual symptoms.

Hope you are taking it easy and looking after yourself.

Mandy

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Thanks Mandy

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Hopefully you addressed any and all questions you had/have to the doctor, altho I realize sometimes--right at the time--you don't think about asking those questions... Just follow whatever instructions he gave you and take very good care of yourself...Did your dr say this might have been a problem BEFORE your stubbed toes accident? ... If so it might be a blessing that this happened to 'find it out'.... so that you could receive the proper medication.

Mallard you CAN be OK!...it just bears attention and watching...but not panicking... Many people live with this... Just MAKE SURE you are getting answers and good direction from your doctor....this will help to give you peace of mind. Take the best of care.

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Thank you so much for your encouraging words Betty30. Its early days for me and I am aware that I need to keep calm and not to panic too much. Its funny you should mention this might have been a problem before I stubbed my toes, because I have been struggling with breathlessness for some time, mainly stairs, hills, etc. always chastising myself that I need to brush up on my fitness. Maybe you are right the injury to my foot just made me do something about it. The thing is my foot and calf are fine now and look normal, so it does make me wonder..... I spoke to my GP, and MPN team and they seem to think its my underlying MPN. Either way, its another thing I have to learn to adjust to. I'm sure I will be find once the dust settles, I am still under emergency care and am off there this morning for more checks and to adjust the warfarin and heparin. Thank you.

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Sorry to hear about your PEs. I suffered with PEs last year, was hospitalised and now take Rivaroxaban daily (anti coagulant). I was on Hydroxy and Aspirin at the time, so it was a shock to suffer from blood clots. I had been confined to bed with flu and chest infection, so that possibly could have been the cause of mine. Some 10 months later I am still experiencing breathing problems and am awaiting results of more tests. I know our blood is thicker with our MPNs, but I hadn't expected clots on my lungs. Do hope everything works out ok for you. Do let us know how you get on. Best wishes.

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Hi Nivana thank you for taking the time to reply to my post. Wow so you had this too, I have so many questions, but I am sure I will have lots more before the week is over. The A&E team seem to think this is my underlying MPN, I have ET. I suppose I have been a bit naive because I thought because it was being controlled by meds, this couldn't happen. I have been breathless for a while but just put it down to the need to increase my fitness levels. The hospital liaised with my hematology team and apparently there are other blood thinners available which are supposed to be easier to manage than warfarin but they are not licensed for MPNs, so not sure about all that. Apparently both my lungs are peppered with clots and some of my lung tissue has infarcted. (died) So I am thinking could all that have happened just because of my foot or has something being going on for a while. Oh so many questions.........I am off to the hospital again at 10.00 am to be monitored. I have a horrible feeling this is going to be a regular thing for the time being. Best Wishes

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Hope all goes well for you. When I was diagnosed with the more substantial clot, I was told that I had been showering my lungs with small clots for a while, so that was the start of my breathlessness, which I thought was due to my slightly raised platelets. (I have ET and PCV). Take care

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That's really interesting nirvana- I have a lot to think about and a lot of questions to ask. I also have et/prv. Thank you

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Sorry to hear that! So the doctor was right in saying that Hydroxyurea does not protect against strokes and heart attacks!! Take care

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Hi Kelly that's what they seem to be implying? This is all new at the moment, I am sure as time goes on it will all become much clearer. Best wishes

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This is what a haem. told me a few days ago when I wasn’t sure what to decide. (about starting Hydro)

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Thank you

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Hi Mallard, I know how frightening this can be. I almost died when both lungs filled with blood clots. I couldn’t move or even speak. Fortunately my husband was home to call for an ambulance. I was in Intensive Care for 10 days, oxygen 24/7, even oxygen 24/7 at home for a few weeks. Had to use walker in house and apartment hallways for exercise with my spouse holding onto a huge belt wrapped around my waist to keep me from toppling over. What a sight I was. Now all better except for permanent lung damage & require oxygen when sleeping. Has anyone said the PE’s resulted from stubbing your toe? It was my hospitalization that led to the diagnosis of MPN. I’m on blood thinner for life and aspirin and Hydrea and manage fine. I’m on Eliquis because I couldn’t keep consistent levels with Warfarin. I like Eliquis because it’s unaffec by the amount of Vitamin K rich food I consume (leafy greens, etc.) Any prolonged sitting or bed rest requires compression hose and leg and arm motions to reduce risk of clots. If you can’t walk around, there are lots of leg/foot and arm exercises that should be done by all of us. Sure sounds like you had an awful scare. Thank goodness you’re ok now. Good Luck. Katie

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Hi again Mallard. The injections of Heparin will protect you from developing more clots until the Warfarin kicks in. I’ve had to use it numerous times before and after surgeries. And if you jab it in and inject quickly it hurts less. But it’s important that you keep moving but not overdue it until the clots dissolve. Hang in there. Believe me, some day it won’t be as frightening. Katie

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Hi Katie thank you so much for your replies. Gosh you have really been through it, haven't you, how terrifying for you and your family. I can't imagine being immobile and unable to speak, its scary just thinking about it. I am glad you are much improved. I suppose in the great scheme of things I have been lucky, I am still mobile and able to communicate. I am still a novice when it comes to all these names of blood thinners etc, but then I knew nothing about ET 5 years ago and feel like a professor now lol. Thank you for telling me about the Heparin that's comforting. I have to say I have never had to inject myself in my life and I was really scared about that but it was fine, I just bit the bullet as they say. I can't stop worrying about the future and how this is going to affect the quality of my life, but I should just be grateful I'm still alive and be more mindful of the moment and take each day at a time. I am off to the hospital now for further tests. I don't know whether to get the car out or the huskie team as we have a lot of snow and blizzard conditions at the moment. lol. Best Wishes.

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Hi. There a many on this site who’ve had ET for decades and are still doing well. I don’t know how old you are but I was told at age 62 that I’ll most likely die of something else. And now we have much more research and discovery so the future is encouraging. Where do you live so that you’re getting so much snow? Keep up your great sense of humor. Katie

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Thanks for your encouragement Katie - I am 59 and live in Lancashire- best wishes

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