Hi everyone, this seems a wonderful community, been feeling yuk since last September, my mother died and it was a very stressful time, not sure if that has triggered this?? Anyway I have been having problems with a really uncomfortable left side, not a pain. More like a massive pressure feeling, went to A&E with it in September and had a blood test, urine and CT scan (no contrast) and they said it was nothing!! ..... fast forward to 2 weeks ago and I took myself off to a private GP as I was still feeling yuk, he gave me a load of blood tests and it came back with a high Haemoglobin of 19.3 ... although my HCT is only 0.48 and my platelets are only 273, RBC is 5.8 so definitely not super high, the GP referred me to an haematologist and I’m waiting for the appointment now, kind of hoping it’s not PV and is just P, or even just a kidney induced rogue result as my Egfr is has dropped below 60 for the first time ever (56), I’m 53 and from West Yorkshire.
Possible PV - just referred and scared - MPN Voice
Possible PV - just referred and scared
The death of parent can make you feel dreadful and coping with the aftermath can be very stressful. Are you looking after yourself properly. Eating poorly, too much alcohol and smoking might well contribute to your symptoms and the slightly abnormal blood counts.
With a haematocrit of 48 it is highly unlikely that you have any sort of polycythaemia, primary or secondary.
Speak to your family or a friend about your symptoms and feelings and ask them to help you get back to your normal self. They may have seen changes in you already.
Thank you so much for taking the time out of your day to answer my first post, I really appreciate it. I lost weight whilst she was dying for 5 weeks in front of me, she had COPD. It is not a nice way to leave this world!! I have blood pressure which is not controlled as I don’t like taking tablets and it is massively affected by stress and anxiety, I felt like it was constantly up and I basically stopped eating , I went for 2-3 days at a time and ate nothing, in the weirdest way (you will think this is crazy) I was doing it for my mum, like I needed to suffer with her (I know, it’s mad) but I must have dropped a stone because of it, I have put it back on now as I started eating normally, but I have had a few of the symptoms of polythycemia, such as feeling hot on a night, tinnitus and I keep getting a really uncomfortable feeling in my left side, like a build up of pressure, I have been scanned by both CT scan and ultrasound and there is no issues, not any spleen enlargement and no dodgy growths, presumably the symptoms will be from the high HB, but all other stuff seems normalish .. what do you think ??
It sounds like your blood pressure needs urent attention. Get to your GP and take your tablets.
Your mum would have told you to look after yourself. So do it for her.
Yes. Good advice from Apllesnpears! If you’re against Tablets, there are natural remedies also. At least that. High blood pressure is not a joke!
My blood cancer ET started at the time my mother was in her last year. I was in Austria with a young child and she in Greece. My brother in US. The running and organizing almost killed me. Physical and emotional stress without end. The last 4 months together were beautiful and very spiritual. I buried her and returned to Austria with a smile on my face. But, a mom is a mom. It still hurts. A few months before my mom passed at 83, she was remembering her own mom, who died when she was just 19 and she cried that she still missed her. It’s so important to grieve and to have closure.
Take good care of yourself! Even if the doctors can’t find anything, something is causing the symptoms. Keep looking. Anag.
Agree with Applesnpears - take BP meds. It is upper important if you do have PV, but it is super important anyway. If you do not like your current meds - try something else! there are plenty of options out there. I ended up with an Angiostatin Receptor Blocker (losartan) that worked great with no side effects. A Beta Blocker (atenolol) and an Ace Inhibitor (lisinopril) had undesirable side effects. You can find something that will work without adverse effects.
Meanwhile - remember that erythrocytosis can happen for many reasons other than PV. Find out what the cause is before excessive worry cause more trouble than it is worth. Even if the "worst" happen and you do have a MPN - bear in mind that most of us live long lives. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I am still alive and kicking with a rich life. More aches and pains and a few stray issues, but heck - aging is not for sissies and beats the alternative.
All the best to you.
Hi Hunter
Thanks for your reply, I know, I keep seeing you pop up a lot and mentioning about how long you’ve lived with it, but I have to say, I haven’t seen too many more mention how long they’ve been around like that, I’ve seen quite a few who seem to have had PV for a couple of years and it’s already flipped to mylofibrosis .... and then what ????? ..... it’s really mixed messages in regards to how long people have PV for without it changing to the more dangerous forms, especially if diagnosed in early 50’s .... it’ll be my luck to get the really poor prog PV!! 
Hi Flavian,
I was diagnosed with PV when I was 52, I will be 66 this year and still have PV. I worried in the beginning about the percentage that mutate, now I just get on with life and don’t give it a thought.
A friend of mine has just been diagnosed with AML, never had anything wrong with her, let alone an MPN.
Best wishes Judy.
What as your quality of iLife been like over those years with PV if you don’t mind me asking ?
I don’t feel my quality of life has suffered at all. I worked full time until 3 years ago, with a couple of hours off every 12 weeks for my heam appointments. Yes, I used to get tired (still do ) but I was busy. I choose to retire early to spend more time with my family. I have 7 grandchildren, the youngest, nearly three who I have one day per week and do school pick up for her brother, almost six.
I started Hydroxy at 59 due to high platelets and luckily have had no side effects at all.
I try to walk most days, weather permitting and go on holiday whenever I get the opportunity.
I drink plenty and try to eat healthily, biscuits are my downfall!
I really have more problems with RA than PV.
I hope you get a diagnosis soon, you will then know what you are dealing with.
Best wishes
Judy
Thanks Judy, I guess the issue is not knowing what mutation you have, it looks like some PV progress quickly to mylofibrosis and knowing my look that’ll be me.
So sorry to hear about your friend Judy and your problems with RA. My osteoarthritis does give me more hassle than my bloods too! Take care, I missed the London forum this year because of a leg op but a reminder is in my diary for 2021
Kind regards Aimexx
If you really want to look at the "odds" then you can look at the longevity research for PV. The better research divides people into risk groups from , low to high risk. The short version is that most of us live near-normal life spans. Here is one sample of this kind of research ashpublications.org/blood/a... .
If you are really interested in numbers, here is a personalized risk calculator. You do need extensive information to get an accurate "prediction." cancer.sanger.ac.uk/mpn-mul...
The thing to bear in mind is what these numbers really mean. They are statistical averages based on data from a large number of people. It is not an individual prediction of your outcome. The statistics cannot tell you whether you will be "average" or whether you will be one - two - three standard deviations to either side of the statistical norm.
It is much more helpful to focus on symptom control and quality of life. That matters far more to me than length of life per se. It also helps to keep things in perspective. Average male life expectancy in the USA is 78.69 years. I am 64. According to the MPN odds - I would likely die sometime between my mid to late 70s. This is a normal lifespan. I do not plan to die on a schedule! There is no timer counting down in my body that will someday go off and take me out. I am not afraid of death (something better awaits me), but neither am I in any hurry to exit this plane of existence.
My own perspective is shaped by my experience of a relatively indolent MPN along with a host of related and unrelated medical issues. Even though the MPN progressed from ET to PV, my quality of life remains good. Sure, there have been challenges but I am still here and enjoying life. You can check out some of my older posts for the "interesting" medical journey I have been on of late. Lets just say I have had the opportunity to learn WAY more medical stuff than I thought I would need to.
Please keep checking in. this is a great place to get information and support. We all get where you are coming from - so feel free to vent and express your fears here. But do also know that PV is not an immanent death sentence. There is plenty of hope for the future and life can still be good. I do not suggest a Pollyanic approach to dealing with PV - there are challenges. I do suggest finding ways to cope that work for you and focus on enjoying life.
All the best to you.
From what you have said, if you do have PV, it appears early stage. A normal sized spleen is good news. It’s only the high HB that might possibly indicate PV?
Re night sweats, could these be panic attacks? And the pain on your left hand side, could it be muscular? Have you tried gentle stretching? Or could it be a gastric problem?
You have clearly been under enormous stress. This will require recovery time. Hopefully if you can eliminate PV you can start relaxing.
Thank you for replying Paul, I appreciate your time.
Firstly, I’m so sorry to hear of the loss of your Mum to COPD. It must have been a harrowing time for you. My deepest condolences to you.
Are you female? If so, those haemoglobin and rbc numbers are a bit more significant, although still not too high. You could have been dehydrated too. The only way you will know if it’s true PV is to have the relevant investigations with the haematologist. Hope you haven’t got to wait too long, it can be an anxious wait.
Keep us updated
Mary
Not at all pathetic. There is obviously something that needs further investigation, we’re here for you. X
Hi Flaviat, I lost both my mum and dad in 2012 and was also diagnosed with PV so I totally understand what you are going through. I felt my world was turned upside down and I came to this forum desperate. I soon learned that I had a load of friends I had never met, who understood exactly what I was going through and how I felt. Trust me, you’ve taken the most important step by posting on this forum.
I wondered too if stress and grief could be factors in kickstarting the condition but going by the symptoms, I think I had it a few years prior to diagnosis. You’ll feel better once you have a diagnosis and accept it, you will then get on with your life, with occasional hiccups if you’re like me.
I try to drink plenty of fluids, eat healthy and also have my treats. I think it’s important you rest if you have to also. I have quite a lot of niggles and pressure on my left side under my ribs but so far my spleen is fine.
Hope this helps. Kindest regards Aime xx😻😻
Oh how it annoys me when clearly your bloods at a and e showed something. I do hope you are sorted soon. You were defiantly to contact us. This site is my saving grace. Good luck keep us posted.
Yes. Good advice from Apllesnpears! If you’re against Tablets, there are natural remedies also. At least that. High blood pressure is not a joke!
My blood cancer ET started at the time my mother was in her last year. I was in Austria with a young child and she in Greece. My brother in US. The running and organizing almost killed me. Physical and emotional stress without end. The last 4 months together were beautiful and very spiritual. I buried her and returned to Austria with a smile on my face. But, a mom is a mom. It still hurts. A few months before my mom passed at 83, she was remembering her own mom, who died when she was just 19 and she cried that she still missed her. It’s so important to grieve and to have closure.
Take good care of yourself! Even if the doctors can’t find anything, something is causing the symptoms. Keep looking. Anag.
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