I’ve been lurking on this forum for I think almost a month now. I’m 27 years old, female. I went to the doctor in February for a routine blood test and the results came back with raised HB and HCT, HB was 175 and HCT was 50 and also my iron is low. My GP didn’t say much except telling me she’s never seen it before in someone my age and mentioned the term ‘Polycythaemia Vera’ and referred me to a haematologist, I see him on 23rd of April. My white blood cells are fine I believe, platelets were at 180.
Naturally I went home and googled it all and pretty much immediately had a break down, read a lot about the life expectancy, it was terrifying. Then I found this site, everyone seems so positive, is it true you can live a normal long life? Some people barely seem fazed, apart from hospital visits and a few other annoying things from the condition.
I don’t think I have symptoms currently, I feel the same as always to be honest, not always full of energy but I’m not the best sleeper haha.
I should also mention, I found out my Uncle 2 years ago got referred to a haematologist for PV and had phlebotomys and extensive testing for 6-12 months, honestly he can’t even begin to remember all the tests he had, there were so many. In the end, they came to a conclusion that his blood just metabolised that way? The haematologist said it was incredibly rare but that’s just how he is, told him to have half an aspirin every day to keep his blood thinner and carry on. His dad (my grandad) died of a blood clot to the heart oddly enough. His sister (my Auntie) donated blood a few times in her 20’s and they would always remark at how fantastic and up there her HB or RBC levels were.
I just thought I would share, I’m kind of full of worry at this stage wondering what’s wrong. I would love and appreciate any support, thanks guys ❤️
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Beerye1
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Please try not to worry and don’t google too much as you will get much more info and support on here. I was the same at the beginning of my journey although I have ET not PV. I was so scared but came to realise that it’s a manageable condition and some on here have had it for many many years. Most of the time I feel well and live a normal life and forget I even have it although it’s difficult times at the moment with the virus. You will have lots of support and I’m sure people with PV can answer more of your questions. You may not have a PV diagnosis so please don’t worry. You can still enjoy your life whatever the outcome. Your young and have a long life to live yet Best wishes Pippa
Thank you for your response, I’m glad you’ve found comfort in this site too, it seems like a very good thing to come across when you’re a worry wart like me haha
Welcome to our wonderful forum. Here you will find very special people who will always understand the emotions you are feeling, because we have all experienced them ourselves. Whatever your concerns, you will receive warmth, empathy, advice, support and understanding. It is impossible to quantify what this has meant to me. All I can say is you will be among very good friends and never feel alone.
Hello Beerye1, and welcome to our forum. It is very scary and confusing when you are told you have a MPN, and we all understand how you are feeling at the moment. I am glad that you have found this forum and that you have seen that there are many people with PV and as you say, they are positive about it.
I would urge you to read the information on our website mpnvoice.org.uk about PV and also read some of the real stories, I am sure they will help you understand more about it, particularly this page
Thank you for your help I really appreciate it, I’ll definitely check that out. I’m in Australia, I wonder if the treatments and attitude toward PV are similar to the UK?
Beerye1, hi... and welcome to our rather exclusive little club. This just means that like the rest of us, YOU too are a unique individual...
I have sent you a private message (PM) which provides some of the details for our Australian Patient's MPN Forum, (MATES), however, there are many wonderful people here too that I am sure are more than willing to help in any way they can...
Try not to be too overwhelmed... It takes a moment or two to collect and regathering oneself etc... But it's quite normal too... And I am sure that most of us here understand some of what you might be feeling and going through right about now...
But stay as calm as you can, and don't worry, you are in great hands here...
Welcome to our group. Glad you decided to post your concerns. You will find lots of support and information here.
I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I am JAK2 positive with a mutant allele burden of 25%. I am fortunately to have a relatively indolent form of PV. I have never had any incidents of thrombosis (clotting). I have always tended more towards hemorrhage (bleeding/bruising). Despite being age 64, I am currently on a phlebotomy-only treatment protocol, which is working fine for me. I have had a long, rich and enjoyable life despite the MPN. I think you should plan to do the same.
A few factoids. Your doc will check to see if you have the JAK2 (Janus Kinase 2) mutation. Most of us with PV do have it. This mutation causes the "on" switch for hematopoiesis (blood cell production) to be on too much. Thus we end up with too many erythrocytes (red blood cells), which can cause problems. For some of us (me included) we also make too many platelets. Some people with PV also make too many leukocytes (white blood cells).
Treatment for PV is about reducing erythrocyte levels and controlling symptoms. For many of us, this can be done quite successfully for decades. If it does turn out that you have PV, you can expect to live a near-normal life span. Be VERY careful when you read the longevity information on-line as much of the "data" lumps everyone of all ages and all risk groups in together. This gives an inaccurate picture of what you should expect. Expect to live a long, rich life in which you successfully manage whatever challenges get thrown your way, whether you have PV or not.
A few more factoids;
1. There is such a thing as Familial MPNs. My daughter (age 34) has JAK2 positive ET and may be moving towards PV.
2. The JAK2 mutation does more than increase hematopoiesis. It also causes your body to produce elevated levels of inflammatory cytokines. This is thought to cause many of the secondary symptoms we experience. I experience: GERD, osteoarthritis, fasciitis, eczema, insomnia. NOTE: chromic insomnia can be inflammation related.
3. Fatigue is one of the most common constitutional symptoms of PV.
Suggest that for now, you wait for further assessment and see what you are really dealing with. If it is PV, do not despair. There is lots more to learn and know about managing PV, but it can be done. Know that you can do it and manage whatever this is.
Please stay in touch and let us know how you are doing.
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