I stumbled across this forum and am so thankful I did. It’s quite a scary, lonely, and overwhelming process being investigated for an MPN.
After finally getting a referral to a hematologist after years of migraines, terribly heavy menses, unexplained fevers and fatigue, I have just been tested for the JAK2 mutation and am awaiting the results. I haven't been able to sleep and can barely eat I’m so scared. I’m quite young and just got married last October. I’m worried this disease will take away my ability to have children and grow old with my husband.
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Kdfotigr
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The stage you are at, waiting for a diagnosis, is very scary. In think most of us on here remember that. However, please be assured that MPNs are something you can live with happily and comfortably. They are NOT a death sentence. Main thing is, you have come to the right place and we will all support you x
Or normal lives. I have a venesection a couple of times a year (takes 15-20 minutes with some time afterwards relaxing), occasional night sweats, and sometimes some itching after a bath which goes away after ten or fifteen minutes. A bit of faffing around with blood tests and hospital consultations, and that's it. Oh, and some minor symptoms of mild anaemia (restless legs, sore tongue). Not a big deal - I work full time, I have been told my life expectancy is normal for my age. As others have said, be wary of just googling for information, because there's a lot of nonsense and exaggeration out there.
I have PV and have had it for nearly 12 years and worked full time until recently. I went part time for tax reasons and nothing to do with my PV. Biggest problem for me is the fatigue, especially if my blood count is wrong. The hot weather isn't good either. Other than that I lead a normal life. Check up every 3 months. Believe me not that scary. Avoid Dr Google, use this site and MPN Voice website they are the best
It's a scary time but once you have processed things it soon settles down, we have all been there & its natural to be scared. Talk with those around you but don't let the fear take over. It shouldn't impact your ability to start a family, your Haemotologist will help you throughout & with treatment you will have a nice long life with hubby. Congratulations on your wedding last year xx
Hello and welcome to our forum, we all understand how you are feeling at the moment, it is very worrying when you are having tests and waiting for the diagnosis, but hopefully by being on this forum you will feel a bit better about it all. I would recommend that you read as much as you can about PV and MPNs in general on our website mpnvoice.org.uk
This will also maybe give you some ideas about what you want to ask your haematologist when you see her/him for the results of the tests, with regards to medications and managing symptoms etc, and to also discuss having children in the future, this might help
The time around diagnosis is often a confusing, anxiety inducing time regardless of outcome. The not knowing is possibly the worst part. And it can feel overwhelming.
Even if PV is diagnosed it is most certainly not a death sentence (be careful what you read on the web!!!). And the vast majority of people - especially if you are young and otherwise fit and healthy - live entirely normal, busy, fulfilled - and long - lives. As Maz says focus on the reliable up to date information on websites like MPN Voice.
There are plenty of younger people on this forum who have had babies, having babies or planning on having babies. The key thing is, if you do have an MPN, is that you are diagnosed, well monitored and under the care of an MPN specialist. Let us know how you get on.
I find it odd that anyone would know what they were being investigated for. So far as I was concerned, it was for anaemia, which I thought could surely be fixed. A bit of a shock when eight months later I was told I had MDS/MPN and knew nothing about either, and to be told my prognosis was about ten years. I'm not sure I believe that anymore, particularly as a year on, my bloods are much the same as they were then. I am in my seventies and expecting a long life (they scanned my organs and they are fine) but I remember being very anxious all the time and not sleeping, not that I ever got a good night, but this was something else, and this was after I got diagnosis, not before. I am sure in your case they will be able to fix your symptoms one way or another to make your life easier, and they may have nothing to do with MPN. I never found out whether I have JAK2 or one of the other mutations, and I forgot to ask at my last appointment. I get the impression they don't expect patients to be all that interested in what they've got!
Anyway, Kdfotigr, this forum is excellent for support, allaying fears, and often humour, and as time goes on, I am sure you will feel much more at ease with having the condition. Still it's a blow when you are young have just got married, not to ignore the fact that these are strange times anyway. Don't let it harm what you have. Take care.
Waiting for results, tests, diagnosis is always the most scary part... somehow when you know for definite then you can deal with it, the uncertainty can be worse.
I was diagnosed with PV in 1988, 32 years later I am still here, work more than full time, and whilst I do get fatigued, it has been nothing like the death sentence I feared at the beginning.
Please try to stop worrying so much as this will make you ill. As others have said even if you have a PV it is NOT a death sentence. Many people on this forum have had it for many years and are still alive and kicking. Try to take each step as it comes without worrying what it might be, try to accept what it is. Once you know for definite what you have, you can then arm yourself with the knowledge of your condition and treatments available. As others have said don’t Dr Google, stick to Maz’s advice about what to read.
This was a scary step for us all, so we all understand exactly what you are going through and we are all here for you.
When you go to medical appointments, take someone with you as a backup to help understand what is being said and proposed. Write down all the questions you need answered and insist on answers where possible. It is your body, your condition and you do have a say in your diagnosis and any treatments necessary.
Above all, keep posting to get the support you need (and we all needed) at this time. Take care, remember we are all here for you.
I am glad you found this forum. It is a good place to get information and support. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. At age 64, I am still alive and kicking. I have had and continue to have a good quality of life. My own situation is a bit more complicated due to a co-occurring condition (Neurofibromatosis Type 1), but life is still good despite the occasional challenges.
Having to wait to find out what you now realize is a type of blood cancer is quite unnerving. The "C" word is scary. Please know that you can expect to live a normal to near-normal life-span with PV. If you have it, you will need to learn to manage the symptoms and actively engage in treatment. If you do that, expect to grow old with your husband. You can also still have children. The one thing to know given your age and plans to be a mother is to not take hydroxyurea (aka hydroxycarbamide) as part of your treatment. There are better options for someone your age who plans to have children.
Once you get your results back, please let us know how you are doing. If you are JAK2+ like most of us with PV, then there will be a good bit to learn about PV management and the other things that go with the JAK2 mutation. I have found that knowledge is power and understanding empowers you to manage your own care effectively. You will have plenty of time to learn to handle this if you do have PV. Know that the members of this forum will be there for you through the process.
I’m overwhelmed by these responses - you all are so kind! Thank you so much for taking the time to calm my fears. I will update once I know my diagnosis and speak to my hematologist. 🤞🏼❤️
I was diagnosed with PV in February of this year, received my first phlebotomy the same day and was told I would live a normal life (I believe they meant new normal). The diagnosis was a blessing because up until then I felt both physically and mentally that I was on the door steps of death (or near death). My doctors confirmed this when they told me that I was having stroke like symptoms and my potassium level was elevated (potential for major heart attack). In addition, I was having neurological issues that impacted my ability to drive a vehicle. In a nutshell, learning how to live with a rare disease and all of its symptoms is a far better option than what the alternative may have been had I not been diagnosed. Others say don't worry or stress, but I say go for it! More importantly, express it. Learning to live with a disease is a transformational process and it takes time. Your stress levels will come down in due time.
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