Blood Clots and Polycythaemia Vera

Hi all,

I was diagnosed with Polycythaemia Vera back in March and have unfortunately had further complications since. My consultant sent me for a purely precautionary CT scan and then called me in urgently last week as it has transpired I have a small cluster of blood clots in one of the channels of my brain (sinus). I have now been put on Warfarin and have had to take additional blood thinning injections over the last few days. These seem to be working well but I have had bad headaches over the last 2 days (although this is likely down to tension & stress rather than the clots as my shoulders are like bricks!)

I thought that these measures would just be for a short time but today I have been referred to a local anti-coagulant clinic where I will have to go every two weeks and it looks like I will now be on Warfarin for life. I absolutely loathe taking drugs so this is really hard for me, as well as it adversely affecting my lifestyle. I don’t drink a lot per week but my friends and I do like making cocktails, having wine tastings and gin tastings every now and then, and my husband and I love to throw parties as well with their own themed cocktail menus. All of this now seems untenable given I can only safely have 1-2 units of alcohol per day. I know that my health is far more important than a few drinks but this has come as a real blow as these are the things I love to do, it’s how I spend my time with friends and it’s a big part of my social life.

I’m feeling pretty emotional about it all and very upset and tearful. I’ve always lived healthily, I don’t smoke, I don’t drink excessively (a few glasses of wine per week at most), I was vegetarian for 28 years and have been vegan for 8 years, and I do regular exercise. I know that I am so much more fortunate than other people, including some contributors on this forum, and that I’m being a bit of baby about this but it just seems so unfair when other people do nothing for their health and seem to have no consequences at all.

Please forgive my self-indulgence - I know that you are all going through things yourself but I’m just so low at the moment and this has just been the final straw.

Many thanks.

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Oh @CarolineL I’m so sorry you’re feeling like this, it’s all totally understandable. It’s not self indulgent at all - I’m really glad you’ve felt able to share how you’re feeling. I’m sure other people will be able to relate and will share their experiences but I just wanted to say that we’re only at the end of the phone if you want to give us a call to talk things through, whether that be today or any other day. Our number is 0808 2080 888. Take care, Alice

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Hi @CarolineL

Thanks for posting and it’s lovely hearing from you.

I’m always instantly drawn to reading from people with Polycythaemia vera (PV) and always forever thankful for them posting as I really do struggle to learn more from a patient perspective as I still find myself in its infancy with the same condition.

Reading your post shows that anything is round the corner and how things can be easily interrupted with a phone call or a set of tests.

You certainly were not rambling or wallowing in self pity and I sincerely hope you posting on here felt a mini weight had been lifted from how you’re feeling at the moment. I find myself coming on here whether to post or read allows me to connect in a safe place to come out feeling less alone with everything or feeling lighter that by replying or acknowledging a post somehow makes me feel lighter.

The news as it sounds has not only taken a physical hit but an emotional and mental one too. To think that one of the things that makes you happy and connect with those that do has been robbed from you. I would (in my totally unprofessional and not medically trained knowledge) would see this a temporary halt to your pleasure/leisure and get all the tests and meds done and give it time to fulfil its purpose. Maybe give mocktails and non alc gins ago in the meantime and speak to your cns and med team about your concerns and try and find some compromise.

You definitely don’t want it effecting your social life and the things that make you happy! It may at worse be a case of just adapting and adjusting for the time being!

Thoughts are will you and again thanks for posting :slight_smile:

Ps. I had a pretty major heart attack few years ago and now taking a mini chemist and so totally empathise at the thought of taking another pill.

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Oh @CarolineL thanks so much for posting.
You were only diagnosed 4-5 mths ago so that shock might, in my experience, still be there. I think with a diagnosis there are so many actual and perceived losses
Then you have been hit with another shock and more losses.
Therefore I do not think that your post is a self indulgence and that you are being a bit of a baby.
Life is not fair, blood cancer certainly is not fair.
I would feel very emotional and upset and tearful too and it is like it is the final straw.
I am concerned that you have had bad headaches over the last couple of days and perhaps let your medical team know if they persist.
Gosh your social life sounds great to me and perhaps there is no need to change it.
As @Rammie18 says Mocktails and non alcoholic gins and other drinks are far more readily available now, they are the ‘in’ thing. Perhaps your next themed party is a ‘taste the difference’ competition party. You can still drink 1-2 units of alcohol a day.
I am sure your family and friends will understand.
Perhaps try not to look too far ahead medical breakthroughs are happening so often now.
Please do ring The Blood Cancer UK support line as @Alice_BloodCancerUK says
I reckon a relaxing pampering massage is in order.
Be kind to yourself and please keep posting.

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Thank you everyone for your lovely words. You’re all so kind and helpful and thank goodness people have this forum to turn to in times of need.

I’m not doing well. I spent 5 hours straight crying last night - it was like a tap I couldn’t turn off. Today is no better and getting ready for work and travelling to work I’ve just been crying non-stop.

I don’t want this husk of a life. I don’t want a life where I can’t ever have a drink with my friends, where I can’t dance (I’m too self-conscious to dance fully sober), where I’m on the sidelines whilst everyone else has an amazing time, where I’m having to watch every sip of alcohol, where I can’t have a proper drink on my birthday, where I can’t enjoy one of my husband’s amazing cocktails, where I can’t attend a wine tasting or distillery tour or have a few mulled wines at a Christmas market, where I can’t even enjoy a simple bottle of wine with my husband in the garden. That’s not a life - that’s treading water until you die.

What sort of life do I have now when all the things I used to enjoy are now not viable? I don’t want another 40 odd years of this.

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Hi @CarolineL it’s so, so tough isn’t it.
I am thinking back to when I was diagnosed 19 yrs ago at 53 yrs old and yes, I can remember all those losses, I came home and wrote my will and funeral music.
Yes, I have made adaptations to my lifestyle, but I do not think about them now. I choose to just drink non alcoholic drinks although, like you, I could drink the recommended guidelines
I still really enjoy my social life.
My losses at the time were slightly different to yours like thinking I would never see my son married, friends have babies etc
Well, 19 yrs later and he is now 49yrs old and he is still not married.
You probably think I am mad but my 70th birthday, just before Covid, was my best birthday ever, with Colin the Caterpillar(s) and it lasted a month having fun and laughter with different family and friends.
Crying is a natural reaction to loss.
You say you are on your way to work. Can you talk to someone at work, do you have friends there, do they have an Occupational Health Dept. I had counselling through them.
Perhaps a GP might think of local services to help you make sense of it all. Counselling helped me. Macmillan sometimes offer 6 sessions.
Give yourself time, loads of time and we are here to support you all the way.
I know that you are at work but the Blood Cancer UK support line is there for you on 0808 2080 888 after 10am
The main thing is to be kind to yourself and really look after yourself and please keep posting.

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I’m so glad that you are well and that you had a lovely birthday.

Sadly it’s very different for me - my whole social life revolves around alcohol and it’s something that my friends, my husband and I really enjoy. Our gin collection is over 100 bottles, we’re part of a wine club, and we have an amazing cocktail cabinet filled with all sorts of concoctions. We don’t actually drink much at home each week but when we’re all together we try lots of different cocktails, or do wine tastings, or gin tastings - all that has gone now. I will never, ever be satisfied with mocktails or sipping soft drinks - that’s not who I am and not how I want to live my life, in fact for me it’s no life at all.

I’d rather not be here than trudge through this sorry excuse of a life with no pleasure and being unable to do all the things that I love to do. I honestly feel as if life isn’t even worth it anymore and all I want to do is curl up and drift away because I am not willing for this to be my life.

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It’s ok to allow yourself to mourn the loss of the person you were pre diagnosis and it’s ok to allow yourself to mourn the loss of life that was before
Acceptance takes time and you will cry many tears

You are still you but living with your diagnosis and you may have to make small changes
You now know how short life can be and you need to grab it with both hands

If it’s only 1-2 drinks you can have that’s better than none you could add into the mix non alcoholic drinks
Your best friends will understand those that don’t aren’t worth having
You can still have your parties with small adjustments

Don’t give up yet
Get some counselling if you can and when your ready
Adapt and thrive you got this

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Thank you for your thoughts and kind words.

The issue is that I don’t want this life and I don’t want to adapt. Yes my friends will be great but it’s not happening to them and it’s not their lives that are changing. My social life and friends are so important to me and now it will never be the same and I will always be on the outside looking in.

No-one even discussed treatment with me or what it would mean and no-one told me it would be lifelong. There’s been no consultation, no face to face and I was just handed a leaflet as if that’s explanation enough. Counselling won’t help because it won’t change the fact that my life is vastly different and I don’t want decades of this sad existence of hospital appointments and never doing the things I love.

I don’t want this sorry excuse of a half life and anything less than what I had is not a life worth living.

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Hi @CarolineL I have been thinking about you all day.
How have you been at work?
You say you have only been given a leaflet and that no-one even discussed treatment with you or what it would mean and no-one told you it would be lifelong.
Have you been able to talk to a specialist nurse, your consultant or GP yet?
Perhaps when they know exactly how strongly you feel they can suggest something different, a discussion or consultation is a two way thing.
If you would like to talk to someone during the evening or night The Samaritans are there for you on 116 123 and during the day the Blood Cancer UK support line is there for you on 0808 2080 888.
Virtual hugs and be ever so kind to yourself and please keep posting.

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Thank you Erica and that’s so kind.

I’ve been tearful all day and had to go to the bathroom several times to have a good cry. Perhaps for some this wouldn’t be such a big deal but for me it’s everything and feels like the end of my social life. I’m only 47 and that just isn’t tenable to me.

I haven’t been able to talk to the medical team as anytime I think about it I well up. I have a Warfarin clinic on Friday to check levels, and a regular Hematology appointment next week (just to take a blood test) then a face to face with my consultant on 15th August.

My husband says that we need to ask a lot more questions and that handing over a leaflet isn’t good enough but I just feel so desolate and like they won’t listen to me anyway and will just insist I keep on taking this horrible drug despite it adversely affecting my mental health.

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Will your husband be able to come to the August 15th appointment and other appointments with you @CarolineL?
It sounds as if you have both got a lot you will want to say and discuss.
Perhaps you now have the time to write everything down.
Having someone with me ensures that I am ‘pleasantly assertive’ and I have found that people do listen better.
Tell them what you have told us about how you are feeling and how this drug is affecting your mental health.
We are here for you both in the meantime and so is the Blood Cancer UK support line.
Really look after yourself.

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Bless you
I was 49 when diagnosed out of the blue with myeloma 2017
I had severe anaemia, my kidneys were on the verge of collapse and I had a lot of boney disease
Single parent with two kids 15 and 19 at the time
Diagnosed on a Wednesday bone marrow biopsy a ct scan the following Tuesday another biopsy on the Wednesday chemo started Friday
It was a whirl wind
First two cycles of chemo weren’t working tumour on spine and fractured my brother asked how long I had if chemo didn’t work told 6 months

I decided I couldn’t give myeloma back and would do anything to get back to some sort of new normality
Put all my affairs in order and there was no way I wasn’t going to see my kids get married and have babies
I asked my friends to make memories with me as I didn’t want them crying at my bed I wanted them to remember me with a smile

Treatment went by in a whirl it was when the hospital appointments were less and I found myself not knowing where I belonged thought I would manage ok but eventually had to relent and ask for help as I couldn’t cope anymore
I was crying all the time
I was eventually diagnosed with PTSD due to a life changing event

My friends were amazing they adapted to my situation I encouraged them to ask questions that they could cry and shout then help by being positive
We had afternoon teas
They took me to hospital
Collected me
Took me out for drives
Sent flowers

I wouldn’t go to any coffee shops or anywhere that made me feel unsafe
I had 3 places I would visit and the girls put my coffe in takeaway cups and didn’t handle them by the rim
I guess I’m saying if you don’t tell people how you feel they can’t help you

I get you we have all been where you are it’s just what you want to do about it

Erica gives great advice about seeing the professionals
I just want to try and inspire you a little with a bit of hope
:cherry_blossom:

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Hi @CarolineL

Sorry to hear you’re having a rough time.

I was diagnosed with Polycythaemia vera (PV) three years ago aged 39 and still feel I’m in the infancy of the condition. I’ve been neglected at work though they are still paying me but now they’ve given me an ultimatum of either going part time or return full time. I’m no where near retiring age or can even start to think about it and have two parents that I care for too.

Really feeling for you and hope you get some good news or a change of feeling soon!

Keep us all posted as hopefully you can see you’re not alone and we are all here for you through the good and bad

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Dear CarolineL
I am so sorry to hear about your blood clot issues. I had pulmonary emboli when I was 41 and they found an issue in my blood with one of the factors which clot blood. I was very lucky to make it as I had 5 big clots and 12 smaller clots.
I was on heparin and then warfarin tablets with a weekly blood test and changes to the level of warfarin according to the results. It was hilarious because I was a teacher, local to the hospital, and so as I arrived the nurses would hoist whoever was in the chair out and do my bloods, because I taught their children at my school. I never asked for this but it was about the only perk I ever received as a teacher!
After I was on warfarin for 18 months the investigations began to find what was the cause. When the factor anomaly was found I was able to come off the warfarin whilst having to make some changes in my life. It was suggested that I should not take long haul flights without planning for blood thinners, I was advised to take 5 mins exercise after 2 hours on a car journey, to not sit all evening watching tv etc but get up and move. I was to be very aware of dehydration in hot weather and if unwell the same and not to stay in bed if unwell( if possible). To wear pressure socks whilst travelling. These all become second nature. I also saw RAF research about eating oily fish and salad the day before flights!
I do not know your age but doctors were keen not to leave me with Warfarin for the rest of my life. If they can, it may be the same for you. It is almost always given for one year. Do not be down. They want the best for you and blood clots can be so serious they will always err on the safest side. I think you must adjust for now but do share how you are feeling. There might be the potential for you to come off it in the future if they deem it safe but it is vital for now that you are rigorous in always taking your Warfarin. The steadier the dosage the better it will be for your blood.
You will be able to enjoy social events but I found that my one glass of wine was savoured and I really experienced the bouquet and flavour. Probably a lot more than when I was talking and laughing whilst I had a couple of glasses before. It is so much more important that you are still with your friends in the best health you can manage.
I hope you find someone who can help you adjust to the new you, talking through the upset really helps. It has been a nasty shock for you and you are still the same lovely person you always were.

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Hi Caroline and others

I was diagnosed with Polycythemia rubra vera about two years ago, after having a clot in my lung and a septic clot on the portal vein of my liver and a clot in my carotid artery which caused a temporary loss of sight. Despite taking a blood thinner plus aspirin I had clots on my bowel lining a year ago which caused it to detach. An experience I do not wish to repeat. I have been on warfarin since then plus aspirin. Touch wood haven’t had any further clots. Neither have I been able to stay on my warfarin target, it yo yos up and down for no discernible reason. I take various other medications, roughly 20 pills a day. I hate pills but they are stopping the clots and that is all that matters. I am permanently exhausted and have learned that one activity a day is all I can manage. At nearly eighty I suppose I have had my life but I don’t want to give in to PRV if I can possibly help it. BecausePRV is a rare blood cancer it is rather difficult to find anyone who knows anything about it, forays on the internet yield little, GPs are very Ill informed, haematologists only interested in. Your blood, don’t want to know about hair falling out,painful joints, itching skin and general feeling of unwellness. My red cell count has sagged to below normal, I wa# told to reduce the Hydroxycarbamide dosage and wait 3 months until next blood count. Sometimes it can be very lonely as only my husband, my carer and close family understand how PRV affects me. I do tend towards bouts of depression, weepy days and short tempered days, but then I wander around the garden and seeing the dahlias glow like gems, the lavender buzzing with bees and the beautiful roses A neighbour drops in with a posy of perfumed sweetpeas. And my world rights itself again.

For all of us who have a blood cancer life becomes a lottery, each of us has to find ther own way of coping as we all seem to suffer different side effects, but being part of this forum we do not have to suffer alone. Marylin

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Oh @Marylin I have always held this magical view of your garden in my mind.
Yes, we do not have to suffer alone on here, we know that there will be others that will understand.
@Marylin by sharing your experiences you will really help others.
It is a comfort that I am not the only one to have depressed days, short tempered days and weepy days. I cannot put my finger on why sometimes.
Look after yourself and do keep posting

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