Blood clot

[nivana]

Hi, been breathless for a while and ended up in hospital with a diagnosis of a blood clot on the lung. Quite scary, I just thought my breathlessness was due to my 'thicker blood' Now on another medication for 7 months. Has anyone else had this experience? Best wishes to all and have a good Easter.

[Helpatlast]

Goodness sorry you have had this and so glad you got to hospital and it is being sorted - no I have not experienced but it is indeed a "risk" for all us MPNers. All the best dear and you will soon be feeling much more comfortable.

[nivana in reply to Helpatlast]

Thank you.

[Mazcd Partner MPNVoice]

Hi Nivana, sorry to hear this, I do hope you are feeling a lot better. Have a lovely Easter. Maz

[nivana in reply to Mazcd]

Thanks Max - still breathless, but hopefully meds will start to dissolve it. Happy Easter to you too. Best wishes.

[nivana in reply to Mazcd]

Sorry about the Max - my spell check keeps changing words!!!

[Mazcd Partner MPNVoice in reply to nivana]

that's ok. x

[Inca]

How awful for you Nivana,hope you soon are well. I get very breathless ,as do many of us...has passed thru my mind about blood clotting,as my usual asthma inhaler does not help the sort of breathlessness I experience now sometimes.We do get some panic times. Very best to you for future health,speedy full recovery.

[nivana]

Thanks Inca for your kind message - still feeling about the same at the moment. Hopefully the meds will start to dissolve the clot soon and my breathing will improve. The hospital has said that in some cases clots do not dissolve and medication would have to be taken for life. I am hoping mine will dissolve and the breathlessness stop. Thanks again. Love and light

[cwayman11]

Wishing you a speedy recovery x

[nivana in reply to cwayman11]

Thank you. X

[RosemaryHarper]

I had a clot in the brain 11 weeks ago - I am now on Apixaban and Aspirin to help thin the blood. (PV was diagnosed at the same time and am on Hydroxycarbamide). I think it is just a matter of time for the clot to disperse - I have read that pineapple, apples and tea are all good clot busters. Take care of yourself and best wishes for a speedy recovery.

[nivana in reply to RosemaryHarper]

Thank you and I hope you are ok now. I will certainly make sure I eat more apples and pineapples! Take care and have a good Easter.

[Sallush]

Yes. I thought I had a weird version of flu as I was somewhat breathless - particularly when walking fast or upstairs. It's only when my left leg decided to swell and turn purple that I got really concerned.

I'm probably a bit of a bore to most people warning them about clots on the lung. They usually associate clots in the lungs as being painful. Mine wasn't - it was 'just' causing me breathing issues which I dismissed as something else.

Turns out I had two blood clots - one in the lungs and one in my groin. Already diagnosed with PV, they put me on Rivaoxaban as well as Hydroxy.

That was 18 months ago and I have probably never been physically fitter. I decided that I needed to try and be in better physical condition to try and combat the side effects of PV and the meds as well as the clots.

I also improved my diet by eating less processed foods and more fresh stuff. I try and do some brisk walking everyday and it does all seem to help.

Keep well and keep positive,

Happy Easter!

Sally

[nivana]

Gosh you went through it with two clots. Like you I thought a clot would be painful and just assumed it was my thick blood. The hospital said it must have come from my leg, but I don't remember having any pain there. I am also on Rivaroxaban as well as Hydroxy so hope it will dissolve soon. Yes, it has also made me think I need to take care of myself. Take care and best wishes and hugs to you.

[katiewalsh]

Hi. My MPN was diagnosed when I almost died from blood clots in my lungs. If my husband hadn't been home and heard my moan I would've died. I couldn't move or talk because both lungs were filled with clots. I had had blood clots in my lungs the year before and was put on warfarin but they took me off thinking I didn't need it anymore. It took just 10 days off warfarin for both lungs to fill with them. After that really bad episode when my blood thinner, warfarin, would slip below the therapeutic range I'd develop clots within 2 days so they put me on Eliquis. I have been clot free ever since but need to stay on it forever. One thing to know on any blood thinners is that a really hard fall can lead to internal bleeding and harm or even kill you so my Doc says if that happens I should go to the ER. Same is true if you're in a bad car accident and it causes a hard blow to your body. I haven't had any problems on Eliquis fortunately except for easy bruising. If your Doc thinks you need to be on blood thinners follow her/his advice. My lungs were permanently damaged and I now need oxygen when I sleep.

Try to take it easy and not strain your lungs until the clot dissolves. Good Luck.

Katie

[nivana in reply to katiewalsh]

Thanks so much for all your advice. What an awful experience you have had, it must have have been a dreadful ordeal for you. So glad you are keeping well on the meds. With all the feedback I have received it seems a number of us have suffered in varying degrees with blood clots.

Take care and thanks again. Best wishes and hugs.

[Buggerbear in reply to katiewalsh]

Hello Katie! I realize this was 4 years ago when you had the clots....hope you are doing better and the oxygen has helped you breathing!!

[katiewalsh in reply to Buggerbear]

Hi. Thanks for writing. Unfortunately because of the damage I’m now on oxygen 24/7 but hope it won’t be permanent & just be nocturnal. Hope you are well Happy Holidays. katie

[Buggerbear in reply to katiewalsh]

Thank you for answering!! I wish you the very best and hopefully your oxygen can be reduced to night only. I have PV and ET and had multiple clots in my lung in July....evidently it did a lot of damage and have had shortness of breath. My oncologist/hemo sent me to a pulmonary dr who said it is severe COPD and suggested oxygen at night. It has me scared to death cause I was told the lung would heal after PE's. but could take time. Happy holidays to you and again thank you!!

[katiewalsh in reply to Buggerbear]

I’m really sorry to hear you also have lung damage. Did you ever smoke or get exposed to bad chemicals? If not I don’t know how it could be COPD which is progressive. I’d like to know more about that. I did smoke & also have asthma. Did they explain that folks with reduced lung function must get their lung function as high as possible to make up for the deficit? Katie

[eastwood1932]

Hi, I am another one who as had blood clots in the lungs, they were elsewhere as well and the one in the leg artery that took me to hospital and they found the others then. I am on warfarin now and like others it is for life. As Katie says you must watch out for internal bleeds with this drug. I ended up having a haemorrhage after a bad coughing fit. But the main thing is that I have been on warfarin and aspirin now for 6 years and no more clots so life does continue. As has been said here, just follow your Drs advice, always better to be safer than sorry where clots are concerned I believe

Janet

[nivana]

Thanks for replying. I am pleased that after all you have experienced you are stable on warfarin. I am taking Rivaroxaban and hope this will get rid of the clot. They did tell me in hospital to look out for internal bleeding as well as avoiding knocks etc. Take care and enjoy the rest of the Easter break.