I had a call from my haem nurse today to say they are starting me on aspirin and want me to get a couple of venesections over the next few weeks.
I'm 39 (with a lively 4 year old!) and diagnosed with PV for a year. My haemocrit has been creeping up since April and they need to do something about it now as it's over 0.50
I know that being monitored and taking action is good in a way but it's a bit scary how much my PV has progressed in just a year. I'm a bit disappointed (if that's even the right word!) and worried that it'll just keep progressing on and on.
I know I'm in a better position than some so i shouldn't grumble but I just needed to get it off my chest.
The aspirin and venesections might reduce my haemocrit for a bit but it won't affect the main issue of my bone marrow producing too many cells so won't affect the root cause which means it'll still progress.
Hoping to feel more positive after a nights sleep.
Thanks for letting me grumble! xx
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Skyehope
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You grumble away, we all need to do it now and then, it’s very important to let vent to our feeling instead of bottling it all up, let’s hope the venesections and Aspirin do the trick.
Little ones certainly keep you on your toes don’t they.
Hi Skypehope, welcome to our group. I know that this is scary, even more so in the early days. I was diagnosed PV in 2015 at age 42. It takes a bit of getting used to, how many venesections, how often, there's a lot of unknowns. It can feel out of control at first. I'm sure it feels like things have progressed really fast for you, but try not to think of this as the condition progressing, (correct me if I'm wrong Maz/good people of the forum), but the only way to know if PV is progressing is a bone marrow biopsy. Your blood is simply proliferating and your haem is working to bring it under control.
You may find that things start to settle down sooner than you think. It can be tough to get to that point but we're here for you if you need us.
Thank you Jo. Interesting point re bmb - I've not had one as my PV was diagnosed just via genetic testing and blood counts so i guess they'd have no starting point for comparison. Feeling a bit better today and aiming to keep busy so those negative thoughts don't have time to creep in! x
Well yes, and also, 2years down the line and I haven't had a bomb. My haem doesn't feel its necessary, yet. It's OK to feel unhappy about this, it's an appropriate response. As time goes by your understanding will grow and you will come to terms with how you are. For now take it easy, find time to relax and take care of yourself. X
I’m an old bird of 63 and was diagnosed 8 years ago with a haematocrit of 74 so you have nothing to worry about!
Aspirin and venesection will be a breeze.
You may in the future be put on a mild chemo drug called hydroxicarbamide - and NO, don’t have a fit - this is a very mild drug which just reduces your bone marrow a bit and therefore reduces red blood cells.
Some people have been taking it for 30 years with no adverse affects, so please don’t worry. I’ve been taking 1000mgs a day for 8 years and have a venesection about 4/5 times a year as well. I see my lovely haemo every 5/6 weeks.
I’m really well, climb fells, walk for an hour a day and live a perfectly normal life.
Please make sure you drink 3 litres of water every 24 hours, well spaced out, and walk or get some some form of exercise. Cut down on alcohol or cut it out altogether, cut down on caffeine, and sugar. Please don’t eat processed food or rubbish because it causes inflammation in our bodies which we don’t need. Exacerbates the problem. The usual stuff.
I buddy a lovely lady of about your age who last year gave birth to a gorgeous little girl so you’ll be absolutely fine.
You should be having a venesection about every three weeks until your haematocrit is below 45.
Sounds as though your haemo knows what he’s doing though.
Thank you Louise. Your reply brought a wee tear to my eyes and was very reassuring.
I drink 3 litres of water a day, gave up alcohol 6 years ago, don't drink tea or coffee and am not a fan of processed food when it comes to meals. Processed sugary foods are a different story and I am just trying to work out a food planner to cut them out and make the most of fresh food including more fruit and veg.
I am very glad that you are well and live a normal active life with your PV, even on hydroxy. Your buddy is very lucky to have you and it's always lovely to hear baby news, especially for people with MPN's.
I have two daughters around your age. You’re doing all the right things, and you’ll be just tickety boo. I buddy 24 ladies aged between 32 and 78 all with PV and all of whom are fine.
If I can give you little tip re health unlocked - this site gets mainly people emailing in who have concerns, aren’t feeling top notch, or are maybe simply not “ copers” etc and so you will never hear about the hundreds of us out here who are absolutely fine, and there are LOADS!
It takes about two years ( it’ll fly I promise you) to get your head round having PV and after that time you’ll just get on with it.
A bit like diabetes, perfectly treatable but not yet curable. However, by the time you’re my age and I’m a creaking 90 plus year old they will have found a cure years before! Any worries just email me
louisebroughton8388@gmail.com or Maz at mpnvoice.org.uk
Sorry you’re having the problems you’re having. I take Hydroxyurea along with a low dose aspirin and that helped a lot. Hope you’re feeling good soon. Ann
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