Polycythemia Vera: Just been diagnosed

Very boarder line.👍

Thank you for moving the post! And yes, I try to over do it a lot of times and I can’t keep up with my fiancé or friends when we are active. I have found that walking works for me. I will use my inhaler and wait it out if I can’t catch my breath, but a brisk walk has helped a lot.

I also think the numbers aren’t extremely high! The symptoms are spot on with what I’ve been struggling with, but after the month of personal lifestyle changes and aspirin the numbers did lower. I decided to ask for another round of blood work today just to see where we are again. I mentioned to my doctor about the Jak2 mutation and she assumes the Hematology/Oncology place will do all of that. We will see. I do hope, even if it is proven to be the wrong diagnosis, that they can find something to help with these symptoms. It is so disheartening to run in circles. Thank you for your reply.

@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️

Hi @margrethe, I can imagine with such a new diagnosis, yet to be confirmed you have many questions. I moved your post to this existing discussion

- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

I did this so you can browse the previous posts and connect easily with other PV members like @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.

I understand your wish to improve your symptoms of shortness of breath and fatigue while you wait for your appointment with the hematologist.

You might find that these breathing exercises help both with shortness of breath and the anxiety you're experiencing:
- Looking for breathing and lung strengthening exercise videos https://connect.mayoclinic.org/discussion/looking-for-exercise-videos/

Good for you for exercising. Have you found a good way to find the right amount for you and to pace yourself?

Hi Sarah, you haven’t posted an update and I was wondering if you’ve had any news regarding your JAK2 test for PV? How is your son feeling after his pneumonia? Is he well now?

I am a 25 year old female and was diagnosed with PV about two weeks ago. I believe it is more of a preliminary diagnosis since my hematology/oncology appt isn’t until July 17th. Anyway, the numbers that caught the doctors eye was my hemoglobin at 16.8 and hematocrit at 49.8. I got more blood work a month later to see if I could get it lowered and I did, to a 15.8 and 45.8. I did this by more water intake (as I am always dehydrated), aspirin and exercise. I am very nervous about my Oncologist appointment coming up but it is a ways away and I still am battling fatigue and shortness of breath every day. Should I push for more blood work and for some sort of immediate relief? Or just ride it out and see what they say in July. I am very nervous about the diagnosis and my doctor hasn’t said much else so I am left to google and to stress myself out. After the diagnosis now I really just want to know more and what I need to do to feel better.

Yes, I know I should not speak off the cuff about clotting, but as I've had very high platelets for 30 years, and only this year (because I hit 65) was given a diagnosis, the sense of danger is somehow different for me. I've been walking the tightrope for a long time evidently. Also, I have to put the fear in its place or it gets the best of me, especially when I'm in a position of waiting. When I can act with confidence, I will.

I did get a second opinion back in December before starting on Besremi--via video at the Mayo clinic. But now, seeing how complex treatment can be, I'd prefer my local doctor to have a bit more experience in MPNs. I see my clinic has a few who MIGHT be more helpful finding trials, weighing treatments, etc.

About supplements and the liver, I did worry about that some but again do not have a specialist to refer this issue to. My second opinion doc at the Mayo was not particularly adverse to me taking some of the supplements suggested as improving inflammation woes. I take an immune boosting mushroom formula, NAC and now, post liver enzyme problem, curcumin.

Well…the first thought that ran through my mind was, “You do know that blood clots can be instantly fatal, right?”
With high hematocrit and high platelets there may come a time when aspirin therapy won’t be enough to stop clots from forming. I’m just playing devil’s advocate here… ☺️
There are worse things than having to take a medication for life, to stay alive.
Believe me, I can appreciate your thoughts about ‘chemo’ meds. For all of my adult life I avoided meds like the plague. Just when I thought I’d be cruising into my golden years having sidestepped any prescriptions old age seems to bring, within 3 weeks I went from being perfectly healthy with no meds at all to a poster child for big pharma. I am living proof that there is indeed ‘better living through chemistry’. Sometimes we need these drugs with the frightening fine print to save our lives, prolong them or just buy time. Just tossing it out there to never say never.

Awkwardness aside, changing doctors is your right. If you’re not entirely comfortable with your current physician, you owe it to yourself to get a second opinion. It’s usually as simple as placing a phone call. If you already have a doctor in mind, that is a great place to start. I found a good discussion you might want to peruse regarding getting a second opinion. I’ve posted the link for you.

I think getting another perspective on your ET will give you peace of mind.
Are you still seeing your acupuncturist? Is this helping with some of your symptoms?
One other thing I wanted to touch on regarding your elevated liver numbers. Were you taking herbal supplements with the Basremi?

Thanks, Lori.

I'd almost rather take my chances with clotting than take chemo for the rest of my life, knowing that it will never solve the problem, just kick it down the road. I think of its side effects on the rest of my body, and resent it. We'll see if I am forced to reconsider.

Right now, I'm trying to figure out how to change doctors at my local clinic. My doctor is kind and concerned but is fearful of all the newer drugs, and never offers to look into them or look into trials, etc. There is a doc at the clinic however who is on one "MPN Specialist" list--a Dr Yasenchek. I don't know how to make the switch, and it will be awkward if I have to face my current doctor and explain that he does not seem to have the training for this rare disorder.