Hi everyone. I was told i had Polycythemia Vera on Friday 20 October. By the time my consultation was over, i felt happier but overwhelmed. My doctor whose care i will be under at the hospital is lovely. I told her how i had been leading up to that appointment. What id read online scared had scared me. I should have had my first venesection this afternoon but i tested positive for COVID yesterday. Apart from venesection every week im just taking aspirin (cant forget my thyroxine). I should be able to get my furst venesection started next week. I am glad there is a forum where we can chat online.
Hi @Meli I am so glad that you have found us, a great big welcome
I don’t believe that you tested positive for Covid in such a short time after your diagnosis last week.
Perhaps it will just give you a chance to breathe and come to terms with your diagnosis.
I bet you felt overwhelmed after your diagnosis, it is a lot to take in.
I am so glad that your doctor is lovely, it makes such a difference.
We are here for you on our forum and I hope others can share with you.
There is also a lot of information on the Blood Cancer UK website.
The Blood Cancer UK support line is there for you if you fancy a chat on 0808 2080 888.
Perhaps write down all the questions you have ready for the next time that you see your doctor.
The main thing is that you look after yourself with Covid and seek medical advice if your symptoms get worse, it can be nasty and the symptoms lingering.
I look forward to hearing more about you.
Be kind to yourself and please keep posting
Thank you. I thought i had a simple cold until i tested myself yesterday. I feel ok now compared to how i felt last week. Just annoyed that i could not get my first venesection in today because of COVID.
Hi @Meli and a big welcome to the forum.
I can imagined you are feeling overwhelmed. Such a lot to take in and add Covid on to that as well - it’s been a full on few days for you!
It can be so scary reading online can’t it?! At least you know you can all the information on here. I can see @Erica has already given you the support line number so use it if you need to.
Please keep us updated on how you are doing. There is always somebody here to listen x
Firstly welcome to the forum and thank you for posting.
I have Polycythaemia vera (PV) and was diagnosed just over 3 years ago aged 39.
It’s definitely a shock to the system especially as no one has ever heard of Polycythaemia vera (PV) until they are diagnosed with it.
For sure, google is not your friend as some of the things that pop up are very scary and alarming and though my early years can say it’s mostly untrue. The charity has gone huge strides of explaining Polycythaemia vera (PV) and there are many here with the condition that can give you realistic and genuine experiences of treatment and living with the condition.
Venesections aren’t anything to be concerned about and is the primary treatment for Polycythaemia vera (PV). If you’ve ever donated blood it’s very much the same experience. A nurse stays with you throughout and as long as you blood is flowing ( lots of water and taking aspirin beforehand helps massively).
I’m not sure if your experiences of cancer but commonly people will instantly think chemo but that really isn’t the course for Polycythaemia vera (PV). There are lots of options if any is needed as if your diagnosis can be treated purely by aspirin and venesections then that’s great.
It does take time and patience for the med team to know your levels, rates of increase/decrease and then best course of treatment so if nothing is really happening or if it goes quiet, this is quite normal. It’s highly unlikely waiting will make anything worse as frequent blood tests are there to monitor what’s going on.
If you have any questions at all please don’t hesitate to drop me a message. I’ve certainly not completed my journey but I feel I’m well into it with plenty of experiences now.
Hope the covid recovery goes well
Definitely worth giving this a read:
Hi Rammie18. I gave blood last year so I know how that feels. Sad thing is now i cannot do that anymore. It is a shock to the system and i have certainly learnt my lesson by not going by Dr Google. It seems that last year the Jak 2 gene showed up in a blood test. Apparently a letter was sent out by my GP practice but i did not receive it. Had i received it i would have acted on it which is what i said to GP who said a few weeks back to get a ‘special test’ done. I’m 54 and until my bloods are within the range that they should be in my total knee replacement cannot go ahead until my Doc at hospital says so. She gave me the red book when i met her for the first time on 20 October. I find writing my thoughts down is helping. I call it Vera’s book. We all deal with things differently don’t we? My doc said last Friday before the f
Venesection make sure you have plenty to drink and something to eat. Thank you for your reassurance.
I totally agree with you. Though I may not seem it, I always found writing helped me understand and give me some release and perspective. Rather than in a book, once I discovered this forum I found posting on this forum was my therapy/safe space to connect with my diagnosis.
Yes before being diagnosed I was donating very regularly which I loved doing and it was there when they test your blood that started the ball rolling in discovering my condition. Crazy to think that by donating blood in helping save lives was or could have been saving yours…
It’s hard to get your head around this rare condition but it’s important to know that there are many of us with Polycythaemia vera (PV), many of whom are on here with loads of advice and support to give and with a wealth of experiences good and bad to share.
Be sure to keep us posted on how you get on and are feeling. You’re no longer a stranger here
Thanks Rammie18. I certainly dont feel alone now. When i write in my notebook the last two days i found myself writing funny things. I read a bit out to Mum this morning and she chuckled. We have been diagnosed with Polycythaemia vera (PV), we have to live with it, but it does not define us. Yes we have regular weekly hospital visits, but we are the same person.
Writing can be such a powerful tool can’t it and seems to help so many of us x
That is so true Nichola 75. Any worries and concerns can be written down and reading it back the next day can make you seem calmer.
So, so true @Meli keep writing and laughter is so therapeutic!!
Erica it sure is. I told my Dad this evening. Dad knew there was something not right. I wasnt my usual self when he answered. Its weird how i feel different now to how i felt this morning.
Hey there @Meli, so sorry to read that you’ve also been diagnosed with Polycythaemia vera (PV) and that the JAK2 diagnosis didn’t reach you for so long. Imagine if it was automated and online! That’s how I got mine and I couldn’t help myself reading up about what JAK2 mutations usually indicate, so you’re not alone in checking with Dr Google.
I was diagnosed with Polycythaemia vera (PV) earlier this year and find this forum really helpful, especially when folks like @Rammie18 and @Erica and others who know what you’re experiencing impart their wisdom. It really does feel safe to let it all out here, which I hope you come to find.
Really glad to read you have a lovely doctor—having someone medical you can be open with is really helpful whilst going through this. It’s not just about the physical stuff when you face the emotional ups and downs of these blood cancers, so seek support where you can I’d say.
You seem to have a great handle on what’s coming up for you during this early stage after diagnosis. Writing about all this will be a great reference for years to come when you’re reflecting on surviving Polycythaemia vera (PV). Other forms of creativity to document your experiences might also help, like making different kinds of art (I’m a keen photographer and writer). Even seeing art at museums can be beneficial at times like these. Really getting into music and films can also be useful for finding uncommon empathy—think of all those old favourite films that might resonate differently now. If you can access it, some therapy wouldn’t go amiss during this upheaval. Art therapy in particular is really helpful for embodying physical imagery outside of yourself with these sometimes unspeakable unconscious worries. Getting out into nature can let its awesomeness make your worries seem smaller, even for a moment. Plus @Erica and I are big proponents of mind-body exercise like Pilates and yoga, which you might also find helpful for improving your energy and clearing your mind.
Practically speaking, do stay as hydrated the day prior to venesection as you can. I was having fortnightly bloodlettings and the only one that went a bit askew was when I was super dehydrated (from going camping just before whoops) and my blood drained really s l o w l y. My poor nurse was trying so hard not to show her concern! I got a saline IV that time which helped speed it up and felt weirdly cooling. Hopefully you won’t experience that but do drink as much water as you can beforehand and you’ll be impressed by how fast your blood lets!
Sounds like you haven’t been prescribed hydroxyurea or Interferon to disrupt the JAK2 gene mutation, so I’d say count your blessings that your haematocrit and other blood stats are low enough to not need medication beyond aspirin. That would be my ideal! I’ve taken daily aspirin for over a decade (for a different ailment) with no ill effects so I hope it will be the same for you. Keeping my fingers crossed that you don’t get the grim fatigue that so many Myeloproliferative neoplasms (MPN) survivors get.
Be well and keep posting, @Meli!
Hi Duncan thanks for the advice. Its my haemoglobin, the red platelets and the haematocrits that need to lower, all the other bloods were ok so far. Thanks for the advice about the venesection. My doc said i have to go every week at the moment and my total knee replacement is now on hold until the three are within the range that my doc says ok to then go ahead.
Hi @Meli please do keep updating us.
Take lots of care
Hi @Meli, I too have Polycythaemia vera (PV) and was diagnosed on Boxing Day last year - Merry Christmas! I had also never heard of it and it came about following a private health check. You know the score, can’t get into the surgery…. Anyway, super lovely receptionist got me a telephone appointment on Boxing Day, I was sent to the hospital and stayed there for 5 days, having venesections twice a day to bring my haematocrit down to a ‘safe’ level from 0.79. They discharged me at 0.55 which is still high but they needed the bed. Continued with venesections twice a week until the end of January and didn’t need one until 6 months later. Last week, my haematocrit was 0.42!
Same advice as from our other Polycythaemia vera (PV) friends - drink plenty before a venesection but make it water .
For me, walking is my saviour and I honestly believe that walking saved my life, as my stats were dangerously high. If I can walk somewhere, I will.
I’ve been resisting hydroxycarbamide and as I’ve just turned 60, they’re keen to get me on it and I had an appointment last week. However, I’m so proud for advocating for myself and said I am an individual who feels well, walks 6-8 miles a day and generally eats well. The lovely consultant did think about it for a moment and said it was a reasonable argument, so I can continue with blood tests to be monitored by haemo nurses and even better, blood tests 6-weekly rather than monthly.
So, if you’ve got this far, you can see that even though a few of us have Polycythaemia vera (PV), our circumstances and treatments vary a lot.
I am so impressed that you advocated for yourself and the lifestyle you have @PollyVera.
What a day to be diagnosed on, I thought the 16 Dec was bad enough.
I also had a hysterectomy one year and was discharged on the evening of New Years Eve. I got home and crawled into bed and got to sleep all snuggly and was rudely awakened by fireworks going off at midnight!!!
I am a walker and really believe in it too.
Yes, we are all very different and so are our personal circumstances
Look after yourself
Thank you; I’m not sure where the courage came from but I am grateful.
Goodness - what an introduction to the New Year!
Hi PollyVera. Thank you. Thank goodness we have the forum to support each other. Had my first venesection yrsyerday. That was ok. Keep foing what you do xx