Hi everyone, I am a 38yr old male living with cerebral palsy who also recently got diagnosed with stage 1-2 CKD. Anyway my HCT has been between 49.2 and 51.2 since 2017 along with HGB 16.4-17.1 so my GP sent me to a hematologist who didn’t seem to think much of it but sent me for a jak2 test anyway and it’s just come back positive, which sounds like Polycythaemia vera (PV). I am surprised and scared. Ironically my latest numbers for HCT and HGB are 49.2 and 16.4 respectively, lower or comparable to 2017. Platelets also normal at 269 and RBC count 5.6(Eryrthropoietin a bit low at 5.2). It was 5.67 in 2017. My hematologist is away for another week and I am in need of some emotional support and hope. I am also confused as my numbers are unchanged and arguably better than in 2017. I do not have VAF as it wasn’t stated on the report I received. Do my results imply a low VAF?Full disclosure, I was born and raised in London but now do not reside in the UK. Looking for guidance and support during what are uncertain times for me. I am married with 2 children
Hello @Eli and welcome to this forum. You will find quite a few contributors who live with Polycythaemia vera (PV) so I trust that will be of help and encouragement to you. I live with a different Myeloproliferative neoplasms (MPN), namely myelofibrosis. I also have mild cerebral palsy and my diagnosis was at age 35 so we have some things in common. At diagnosis I was told my Myeloproliferative neoplasms (MPN) had features of Essential thrombocythemia (ET) and myelofibrosis but in recent years the disease has progressed and it is now 100% myelofibrosis. I have lived with this for over thirty years. I won’t pretend it has been easy but I am grateful to have lived with it for so long. Plus, there is much more knowledge and medications available now than there was in the 1990’s. Sorry, I can’t answer your specific questions but I wanted to reach out to you and share some of my story. Thinking of you. Warmest wishes, Willow
Thank you very much for your reply, I really appreciate it. All the best, Eli
Hello there @Eli, welcome to the forum. I’m really sorry to read of all that you’re contending with right now, but would like to offer some reassurance like I see dear @Willow already has (hello there Willow!).
In 2023 I was also diagnosed with the JAK2 gene mutation, sent to me as a terrifyingly blunt automated test result via my health insurance app (I’m also a Brit living outside the UK, in my case the US). Your surprise and fear are very familiar to me as I also had to wait for further testing before my diagnosis of Polycythaemia vera (PV), including thorough blood tests and a bone marrow biopsy and aspiration. The time in between tests and results were horrible and I really feel for you.
From my non-medical point of view, I’d say for now try not to google as information online is often outdated and thus irrelevant. Our own individual test results and treatments will become long-term and specific to us, regardless of what a search engine generalises. Try to stick to official blood cancer organisations like here or Blood Cancer United (if you’re in the US) which have spent years researching.
While the JAK2 gene mutation is most commonly linked to Polycythaemia vera (PV), that isn’t always the overall diagnosis so please hold out hope. Some folks around the forum have the JAK2 mutation but another disorder, often Essential thrombocythemia (ET). Polycythaemia vera (PV) and Essential thrombocythemia (ET) are closely related Myeloproliferative neoplasms (MPN) so perhaps you’d like to read a bit about them: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I’m not sure what VAF is but I’m sure your specialist will explain what your test results show. The same goes for complete blood test results. What I’ve found since my own diagnosis is that my blood cell numbers improved over time (as in, my treatments thinned my blood, decreased the blood cell overproduction, and lowered my haematocrit), but that they can still increase or plateau. There’s no hard and fast way to keep them at exact levels, so I’ve had to get used to the variability and trust it’s all still doing what it’s meant to.
My first haematologist told me I was young to be diagnosed with Polycythaemia vera (PV) and initially that gave me a sense of being stuck with it for potentially decades. Now I feel a sense of relief as there are decades ahead in which treatments will be found that might even bring Polycythaemia vera (PV) into remission or cure it. Currently it’s considered a rare, chronic type of blood cancer, a slowly developing type.
I’ll end with something my current haematologist reminds me of, that I am more likely to die in old age with Polycythaemia vera (PV) than from it. We can live full lives even with these vile diagnoses, following treatment and keeping healthy. I hope you don’t have too long a wait for more clarification @Eli, do please let us know how you get on.
I just want to thank you all for taking so much time and care to respond. It is very comforting to know that others have gone through similar experiences and yet have learned to thrive and I can already see how this forum will be an invaluable resource and source of support for me. Wishing everyone well.
You’re most welcome @Eli, it’s made my day to read that you feel comforted by support. This forum really is amazing, it’s kept me going for sure. Perhaps have a look around as you’ll find many people have shared their experiences of tolerating all this stuff. I imagine you’ve got some great tips to share too with your own experiences of long-term illness.
For now though, I hope you have loved ones you can share your concerns with? It really helps me to let it all out in therapy, but even a close friend or relative might be great at listening. You’d be surprised how many people have blood disorders and open up about theirs when they find out about ours.
I wish you well too and do please ask or share anything here that you need to.
For now I am waiting till my hematologist returns from holiday in about a week. My actual appointment is Jan 6th by which time things should be clearer. I am much calmer now thanks to the kind people on this forum. I have a wonderful family with a very supportive wife and two cute young children who keep me busy and smiling. Will keep everyone posted. For now I feel like I am getting back to being myself and I have no symptoms.
I was identified having a JAK2 mutation over two years ago. I’m now classed as having a CHIP, which is a pre cancerous stage. My blood levels have been found to be normal, but I’m monitored having blood tests every 3 months.I’ve had two BMBs, both of which were inconclusive. I’ve been told it’s likely I will develop Polycythaemia vera (PV), maybe sooner or later, but at the moment I’m on watch and wait. When I was told I have the JAK2 mutation I was terrified, googling and it took over my life. I’m now much calmer, feel well and getting on with life. Try not to worry and remember that Myeloproliferative neoplasms (MPN) is a manageable cancer, with most people living normal lives, with normal life expectancy.
Thank you @Susiewest for sharing your experience, I really appreciate it. I also suspect I might have CHIP, though that is purely speculation at this point and it is statistically unlikely. Keep well!
Ok, so an update is that I briefly spoke to haematologist and she was reluctant to officially diagnose me without a BMB which she’d rather avoid at this stage. She’s put me on 100mg aspirin and asked me to take omeprazole PPI to reduce risk of stomach ulcers which she said were prevalent in people with Cerebral Palsy. Spoke to my nephrologist as I’m concerned about nephroxicity and he gave me the go ahead. Interestingly he wrote on my report that I have Polycythaemia vera (PV) so he’s clearly not bothered by a BMB. Feeling sad as its never nice to be asked to take more pills and see one’s risk factors pile up, even if you intellectually know it to be true. Short messages of encouragement would cheer me up. Thank you to this wonderful community.
Hello @Eli. Thank you for updating us on your situation. I understand regarding yet more pills for you to take. I feel similar to you in that the number of pills seem to be increasing as I get older. However, it is good that your medical team are wanting to protect you from any blood clots by giving you the aspirin. As I said in my previous post, I too have cerebral palsy and I didn’t realise we could be prone to stomach ulcers. I have learnt something today from you. Thank you. Take care and be kind to yourself. You have a lot of new information to take in on top of all that you are already coping with. Thinking of you and sending warm wishes, Willow x
Hi @Eli thanks so much for the update, I have Chronic lymphocytic leukaemia (CLL) and other complications so I know what you mean about taking tablets.
When I collected my monthly prescription yesterday I felt like Santa with his sack full of toys.
Glad to hear you are in touch with your medical teams.
We are here and will be around over the holiday time. I think it is weird that I can feel lonely, sad, down and in a isolated bubble sometimes when there is lots going on around me.
As @Willow says I also like to learn something every day, thank you.
Sending virtual hugs and look after yourself
I really appreciate the responses, thank you!. I went out to friends and I’m working to go day by day and look at the positives. Right now, my life hasn’t changed much. Its just to take some more tablets an keep an eye on the situation. I have a wonderful family and very supportive friends, which I am very thankful for.
Just wanted to say thank you @Susiewest for mentioning CHIP. I had no idea there was a pre-cancerous “Clonal Haematopoiesis of Indeterminate Potential” for Myeloproliferative neoplasms (MPN) like there is Monoclonal gammopathy of unknown significance (MGUS) for myeloma, I went and had a good old read about it.
Super interesting on a personal level as I experienced many potential symptoms of Polycythaemia vera (PV) years before it was picked up in blood and genetic testing, for example a heart attack caused by a clot, blood and lymph node and kidney infections…
I’m not surprised you were terrified after the JAK2 result! So was I, to be honest. So glad you feel calmer now. I hope it never develops any further for you @Susiewest! Hard as it is to believe, but the Polycythaemia vera (PV) I live with does now feel manageable, like you say.
Thank you again for sharing such helpful information, gives me stuff to quiz my haematologist about when I see him!
Oh @Erica the image of you dragging a sack of medicines has me smiling! Gifts of health for yourself. Funnily enough I tried collecting mine yesterday too, but was met with a terribly rude pharmacist who didn’t know what they were doing, so I’ve gone back to receiving mine in the post!
So true how these sorts of times of year can feel isolating, especially if far from loved ones. Perhaps that’s to be expected when living with these rare chronic conditions, our own little illness bubbles! I hope you have some lovely meals to look forward to, while I wish mince pies were a thing over here 
Ah welcome to the aspirin club @Eli. It sounds like your doctors are already countering its potential side effects with another medicine, good stuff.
For what it’s worth, I’ve taken daily aspirin since a heart attack many year ago and I haven’t experienced issues. Lots of other forum members mention taking it too for their Myeloproliferative neoplasms (MPN). I’m always kind of impressed that such a simple, cheap, well-researched medicine can help with these blood disorders so well. Having thinner blood from the aspirin makes it easier on our hearts too, so we get bonus health rewards!
I understand your sense of sadness. For me, I’d lived an active and healthy life and hated needing to take medicine when all of a sudden I had all these chronic conditions. I’d say feel the loss, express it like you are here, and it’ll come to be tolerable. I went through a kind of grief for my pre-diagnosis life, which therapy has really helped me get my head around. This forum too is really helpful, as you are already finding!
Oh @Duncan and all. How would the Postie, Pharmacist or Santa post my meds through the letterbox or down the chimney? I visualise everything and can imagine if they posted the glass bottles first they would smash and then the packets would land in the mess or vice versa and the packets would get mangled as well. If we had a cat or dog eagerly inspecting and lapping up the mess (bewaring of the glass) they would not suffer from indigestion or irregular habits. By the way I do not have pets as I can only just look after myself!!!
I have been feeling very reflective this week as I had my 22nd cancerversary and it brings up a lot.
Yes, I wish you and all good health, peace and happiness and keep posting
My wife just bought me little compartments for pills for each day of the week. A little sad that this is now necessary but its practical. More concerned about about the effects of the medication on my kidneys as I’m early stage 1-2 CKD(who knows maybe thicker blood caused CKD by making things work that bit harder, we will never know). Nephro said its ok and to follow up in 3 months just in the unlikely event it causes issue, so they’re on top of it, which is all I can ask for. I am Jewish, its been a weird hannukah but we’re getting there and I think I’m in good care. Merry Christmas and happy new year and thank you all for your support, it is invaluable.
And now I can visualise all that chimney drama too! I slightly dread our dog getting into my medicine box but thankfully he’s shown zero interest so far. He’s more interested in accidental biscuit droppage!
May I wish you a very happy cancerversary dear @Erica, and I hope you have many more to come! 22 years is pretty incredible, I hope I can live as well as you. Have yourself a lovely festive time 
Great stuff, medicine boxes become pretty handy I find, especially with little ones around (child or canine editions!). Good for travelling too, or keeping spares around the home.
It’s also great that your nephrologist is okay with the asprin usage, that’s got to be one less thing to worry about for now while you get your head around it overall. You’ve had some big health news @Eli so I’d say try to let that settle a bit so you can enjoy this time of year.