Covid-19 and blood clotting: What does anyone make... - MPN Voice

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Covid-19 and blood clotting

Hat3 profile image
Hat3
72 Replies

What does anyone make of recent reports of growing evidence that Covid-19 can cause blood clotting abnormalities in patients, which could increase their risk of death?

The study, published in the British Journal of Haematology, says that researchers at the Irish Centre for Vascular Biology, RCSI and St James’s Hospital, Dublin, have reported finding that patients with severe coronavirus infection have micro blood clots in their lungs – something they say is not seen in other lung conditions, and could explain why people with severe Covid-19 have a drastic drop in blood oxygen levels.

I have ET and am now wondering whether this means coronavirus poses an even greater risk than we thought.

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Hat3 profile image
Hat3
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72 Replies
Raphael_UK profile image
Raphael_UK

I’m in hospital now, got coronavirus about 4 weeks, now I seems to have a clot in my lungs and maybe heart, had CT scans but it’s not clear so I’m having another scan with dye. Have ET 3 years on Peg.

Dazakella2010 profile image
Dazakella2010 in reply toRaphael_UK

Oh my goodness... I do hope everything goes ok..... please keep us updated.... sending you lots of love

Raphael_UK profile image
Raphael_UK in reply toDazakella2010

Thank you, I don’t feel too bad.

EleanorPV profile image
EleanorPV in reply toRaphael_UK

Sending you lots of support. Updated us I'm also on Peg.

mhos61 profile image
mhos61 in reply toRaphael_UK

Oh Raff, I was wondering how you were doing. I’m so sorry to hear this. You’ll be in good hands. Wishing you best wishes and a speedy recovery.

Incidentally, a friend of mine in a different town has had the virus, she wasn’t too bad symptom wise, but her husband was taken in to hospital by ambulance with breathing problems (pneumonia), they also scanned him to look for clots, so it must be a manifestation expected with this virus. He doesn’t have an MPN.

Best of wishes

Mary xx

Raphael_UK profile image
Raphael_UK in reply tomhos61

Thanks Mary, I don’t feel too bad just very bored.

mhos61 profile image
mhos61 in reply toRaphael_UK

Thoughts are with you!

mjfin72 profile image
mjfin72 in reply toRaphael_UK

Wishing you well and a speedy recovery.

Mandy

Mazcd profile image
MazcdPartnerMPNVoice in reply toRaphael_UK

Hi Raff, sorry to hear this, but glad to hear that you don't feel too bad, that is good, hope you can get home soon. Best wishes, Maz

Raphael_UK profile image
Raphael_UK in reply toMazcd

Thank you Maz

linphy profile image
linphy in reply toRaphael_UK

Wishing you a speedy recovery

Tico profile image
Tico in reply toRaphael_UK

Hi Raff. Wishing you a speedy recovery,keep us updated. Glad your not feeling too bad. Sending warm wishes to you. Tina.xx🤗

Grumpyfairy profile image
Grumpyfairy in reply toRaphael_UK

Wishing you a speedy recovery

Superwoman profile image
Superwoman in reply toRaphael_UK

Sorry to hear this, let’s hope you are up on your feet’s soon.

Jean

paintbox profile image
paintbox in reply toRaphael_UK

Sorry to hear that you're suffering with Covid19. I really hope you recover fully soon. ATB to you x

ntrahan1998 profile image
ntrahan1998 in reply toRaphael_UK

Praying for a speedy recovery. God bless you!

Raphael_UK profile image
Raphael_UK in reply tontrahan1998

Thank you

Simris profile image
Simris in reply toRaphael_UK

Hi Raphael_UK,

Thoughts and prayers with you and big hugs from me ❤️ ❤️

Love Phyllis x

Raphael_UK profile image
Raphael_UK in reply toSimris

Ahhh thank you Phyllis x

Chel1 profile image
Chel1 in reply toRaphael_UK

So sorry to hear this hope all goes well

Mal42 profile image
Mal42 in reply toRaphael_UK

So sorry to hear this, I hope you get well soon. Mal

Bluetop profile image
Bluetop in reply toRaphael_UK

Best wishes for a speedy recovery. Glad you are not feeling too bad.

Cassie11 profile image
Cassie11 in reply toRaphael_UK

So sorry to hear this, but I know this disease affects various organs, no consolation to you though. Wishing you all the best for a good recovery, Cassie11 x

Susana7 profile image
Susana7 in reply toRaphael_UK

Oh Raff, so sorry to read this... I am still surprised you even got coronavirus with all the precautions you took, very unlucky. It is reassuring that you are not feeling awful. I hope they are taking good care of you in hospital. Are you in Watford? I wish you a speedy recovery. 💛💛💛

Raphael_UK profile image
Raphael_UK in reply toSusana7

Hi Susanna, I was being so careful but it seems I caught this at the doctors. I feel ok now. I am in Watford, they are just dealing with the after affects of Covid. They did the swab test so I know I’m clear of it now, not sure why but they did it twice, at least I don’t need to worry about passing it on to my wife. I hope you well Raff x

Susana7 profile image
Susana7 in reply toRaphael_UK

Oh that is good news, at least the virus is gone, your wife is safe and you should hopefully have immunity. I hope the clots will resolve soon and you can return home. All well with me, I have been self-isolating for around 46 days now (although not shielding, never got the letter). All the best, Susana xxx

OHalloran profile image
OHalloran in reply toRaphael_UK

Wishing you a speedy recovery and best wishes.

Wyebird profile image
Wyebird in reply toRaphael_UK

Oh gosh you keep well and keep us informed. Wishing you a speedy recovery

amhann profile image
amhann in reply toRaphael_UK

Hello Raph - sorry only just read that you’ve had complications + not been able to stop home - wishing you a very speedy recovery. Anne-Marie x

light profile image
light in reply toRaphael_UK

May God send you healing blessings and may His healing spirit work through minds and hands off medical professionals. Amen

Raphael_UK profile image
Raphael_UK in reply tolight

Thank you so much, feeling blessed.

hunter5582 profile image
hunter5582 in reply toRaphael_UK

Wising you a speedy recovery my friend. I am glad to hear that your feel well enough that boredom is an issue. I can certainly sympathize and have experienced the same when confined to bed and/or room. Also wishing you vast sums of entertainment and amusement upon your release.

Raphael_UK profile image
Raphael_UK in reply tohunter5582

Thank you, I’ve just been doing the rounds chatting to all the patients so I’m not quite so bored. Most of the patients are post Covid lung damage, some pretty horrendous stories. I’m lucky I feel ok.

hunter5582 profile image
hunter5582 in reply toRaphael_UK

Glad to hear that both for your sake and for all the rest of us with MPNs. Many MPNers are quite worried about whether they will be at increased risk it they contract COVID19. Please keep us up-to-date on your recovery. It is encouraging news for all of us.

Raphael_UK profile image
Raphael_UK in reply tohunter5582

I don’t know whether my problems were in anyway connected with ET but one thing was for sure every one in my ward who obviously doesn’t have ET were much more sick than me. So I don’t think we are any worse off than anyone. This Covid is so variable that some people get mild symptoms, some people who I am here with in hospital have horrendous symptoms.

hunter5582 profile image
hunter5582 in reply toRaphael_UK

This COVID19 is a mystery. Hopefully the reasons for the variability in its presentation will become clear. I am glad to hear examples of having a MPN not changing the outcome of this virus. Hopefully your experience will be a trend that continues.

JP1952 profile image
JP1952 in reply toRaphael_UK

Such good news that you're feeling better, and on the road to full recovery. It's a very positive message for the rest of us. Little bit worrying that you caught it at the docs. Best wishes.

Jeanne

Raphael_UK profile image
Raphael_UK in reply toJP1952

I can’t be 100% sure I got it at the doctors, but I did get all the government text to say be extra careful so I was self isolating, not even allowing my kids/grandchildren to come round but I had a GP appointment and they wanted me to come in. Later that day they closed the surgery even though people had appointments because someone had gone to the surgery with Covid 19. May be a coincidence. But I can’t think how else I could have caught it. My GP also caught it and he was really ill.

Lena70 profile image
Lena70 in reply toRaphael_UK

Hello from Arkansas! I logged in here just to see how you are doing. I hope you get to go home soon.

KC63 profile image
KC63 in reply toRaphael_UK

Sorry to hear of complications. Hope you'll be home soon x

Alex9621 profile image
Alex9621 in reply toRaphael_UK

My prayers and thoughts will be with you.

Raphael_UK profile image
Raphael_UK in reply toAlex9621

Awww thank you. Raff

Cja1956 profile image
Cja1956 in reply toRaphael_UK

So sorry to hear that you are ill. Best wishes for a speedy recovery.

Cindy

Raphael_UK profile image
Raphael_UK in reply toCja1956

Thank you, I’m feeling better now.

Jlah profile image
Jlah in reply toRaphael_UK

Hi Ralph. I was wondering how you were. Sorry you had complications. I hope you continue to make a good recovery. Take care and take it easy. Jx

Raphael_UK profile image
Raphael_UK in reply toJlah

Hi ya, feel absolutely fine, but I’m still in hospital while they figure out how to get my heart rhythms back to normal and my resting heart rate back to 65 which it was instead of 110 which it seems to be stuck at. Also left side of my heart is a bit swollen. All post Covid damage. This all happened when I got Covid 19 but the doctor are not convinced as they don’t know enough about post Covid damage yet. Take care Raff

Dovme profile image
Dovme

Wishing you well

Raphael_UK profile image
Raphael_UK in reply toDovme

Thank you.

piggie50 profile image
piggie50

All good thoughts coming your way Raff, I hope you get well soon.

Judy xx

Raphael_UK profile image
Raphael_UK in reply topiggie50

Awww thank you.

Poppy6060 profile image
Poppy6060

Hope all goes well and wishing you better

Poppy

Mazcd profile image
MazcdPartnerMPNVoice

Hi Hat3, this has been raised on a couple of other posts and I had a reply from Prof Harrison, so will post it here as well for you:

Yes thrombosis is a problem. But we have no view that MPN increases that risk nor whether if you have had a thrombosis in the past that the risk is increased. Many patients with COVID-19 in hospital will receive anticoagulation protection with heparin and what the correct dose of that is forms part of some current research.

Hat3 profile image
Hat3 in reply toMazcd

Thanks Maz. Sorry for the repeat post - it's difficult to keep up with everything on the site!

Mazcd profile image
MazcdPartnerMPNVoice in reply toHat3

no worries, better to have it repeated than not on at all, that is what this forum is for, to keep people up-to-date with everything, so good that you did it. Best wishes, Maz

Simris profile image
Simris in reply toMazcd

Hi Maz,

Thanks for post at this worrying time, much appreciated ❤️

Love Phyllis xx

Cassie11 profile image
Cassie11 in reply toMazcd

Thanks for confirming what I heard at the webinar Maz.

Grumpyfairy profile image
Grumpyfairy

I’ve literally just read this, got me more concerned than I already was.

babbittybumble profile image
babbittybumble

Hello Raff . Hope you continue to get better. Take care Gill

Camelian profile image
Camelian

Hi Raf I'm glad you're starting to feel better take care.

Moonchild1 profile image
Moonchild1

Hello Raff hope you are on the mend soon, sending lots of love and positive thoughts,

Sue xxx

BeckyDing profile image
BeckyDing

Hi Raf

Sending lots of healing and positivity your way! Keep in touch and hope you are better and out of hospital very soon

Take care

Chaz1 profile image
Chaz1

Wishing you a speedy recovery Raff.

In response to the question have a look at the MPN voice/Leukaemia Care webinar video - available on FB to watch again. Prof Harrison said the indication is clots are from inflamation in Covid-19 rather than the reasons MPN patients are at increased risk of clots - she did say was important to mention that you have an MPN if you need to seek medical attention & that it was useful to say to the medical team that you have a sticky blood condition if they haven't heard of MPN - which we know many haven't.

Stay safe all x

Cassie11 profile image
Cassie11

Another point of view here. At Wednesday's Webinar, one of the haematologist said Covid19 poses no more risk to MPN patients than anyone else. The medication we take reduces the risk of blood clots so I personally wouldn't worry too much, but I am 68 and don't seem unduly worried about coronavirus. I've lived most of my life, but I still observe government guidelines.

Wyebird profile image
Wyebird

I wonder if the fact that we are on medication to lower the chances of blood clots actually decreases the size of them should we contract the virus🤫

Hat3 profile image
Hat3

I've found the webinar online and will be watching it so I've got the latest info. Thanks all.

Jenny_F profile image
Jenny_F

Sorry to hear about the complications Raf, get well soon

Nmom profile image
Nmom

My 18 yr old son has ET so I worry about the clotting issue with him. The MPN video was encouraging. I found it interesting that interferon was a drug being looked at for Covid-19. Right now my son is only on aspirin and takes curcumin. I’m going to ask his dr about adding CoQ-10. My son had confirmed Influenza A in Dec and ended up in the hospital. Fever, chills, sore throat and a hard time taking deep breaths. They did xray and CT scan to check for clots. He had to strengthen his breathing when he got home. He’s never been that sick. I’d like to test his antibodies to see if he also had Covid. He is so ready to see friends! My husband and I are trying to figure out what that will look like for him until treatments are figured out. We’re thinking masks will be involved! So thankful for this group. I was afraid to join a forum- I was afraid of reading horror stories, but you are all so helpful and encouraging. Blessings to you all!

Dovme profile image
Dovme in reply toNmom

I took an antibody test on Thursday should hopefully get the results on Monday. The antibodies take three weeks to develop so one needs to think abt timing

Probably haven’t had it but keen to know one way or other

JaK2ET profile image
JaK2ET in reply toDovme

I'd like to take an antibody test to see if I have really had CoViD19 already ... so may I ask how you managed to get yours? (I'm in the UK.)

Dovme profile image
Dovme in reply toJaK2ET

I am in Germany. I got it via a local GP that’s been designated to do the tests. It took two days to get the results which were negative. I think the tests will be available in the UK soon. It takes the body 3 weeks to produce sufficient antibodies

krotsida profile image
krotsida

Have a restful recovery and come back even stronger!

Greetings

Anastasia

Stevesmum42 profile image
Stevesmum42

Hi Raff . Just picked up your thread. So sorry to hear you caught the virus, big shock for you... I hope your recovery is going well, and you get the all clear to get back home very soon.

Very best wishes Sandy xx

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