need help

[Graedible]

Hello

for years my blood tests show an elevation of hematocrit and hemoglobin. the last one was 55. I was referred to a hematologist. I'm 20 years old and I'm scared with everything I read about having a high hematocrit ... Do you know what I will have to do with the hematologist?

thank you for your answers and sorry for my english!

[Inca]

My HC T &H G are always high. Often over 50 ,for 11 yrs now . I have PV,treated with Jakavi,at first with Hydrea....do not worry ,you will be OK!

Best Wishes to you Graedible,help is there for you.

[Graedible in reply to Inca]

thank you for your answer which comforts me, I just hope that the hematologist will not make me a painful test and that the wait will not be too long to have the results...

[Inca in reply to Graedible]

I am in France,we get results quickly here,I do not know about U K or other countries,I am sure you will get the right medication wherever you are. I am actually English but lived in F r for long time,was diagnosed here and my treatment is excellent,hope the same for you.Great help also from this site...Best Wishes.

[Graedible in reply to Inca]

thank you for your answer, I will tell you what the hematologist will do tomorrow with me but in fact I'm not really worried for myself it's more for my family ...

[mark382]

I had a level of 57 and was revered to haematoligist 11 years ago. Had scans etc and see haematoligist every 3 months. I have Polycythaemia Vera and am on low dose aspirin and venesection when needed. As long as you are being treated I wouldn't worry about it. As my haematoligist says it's being managed. Yes some days are bad with fatigue and you have to know your limitations. This forum is great for information and support.

[Graedible in reply to mark382]

if I understand correctly we can almost have a normal life ! thank you for your reply

[mark382 in reply to Graedible]

Yes you can. Like everything in life we have good days and bad days, but generally after a venesection I feel good.

[hunter5582]

I was diagnosed with a MPN over 30 years ago. Had Essential Thrombocythemia that later progressed to Polycythemia. Still alive and kicking! While there can be challenges in dealing with a MPN, most of us live long full lives. At this point you do not know whether your Erythrocytosis (medical term for elevated red blood cell levels) is primary or secondary to another condition. For now, try not to stress too much about it, especially if you are otherwise asymptomatic. Once you have a better idea of what you are actually dealing with, then it will be time to really get educated about what the condition is so that you can make good decisions about your care. Before then, suggest you not scare yourself with pondering about things that may not even be relevant to your situation.

All the best.

[Graedible in reply to hunter5582]

I think you're absolutely right I'll wait and try to think a minimum about all of that. Thank you for your reply and sharing your experience which reassures me!