1. < Blood Cancers & Disorders

Wow, a boomerang with a doctor.

Posted by chella65 @chella65, Oct 8, 2023

I think I've posted my journey to diagnose my elevated rbc and ht. They exrayed and ran tests, checked my heart did 1 philbotomy.
I was to see my hemotologist to go over tests and make a plan. My levels had come down just a few points from the philbotomy but still elevated.
She could not be there that day for some reason, they were calling those that had appts but another doctor saw us few who were already there.
He advised me he didn't think I had pv, that there wasn't anything found to cause it. That I just had thick blood. I said so what do I do about that, take aspirin or what...he said if you want to. Then he asked how did the philbotomy make you feel. I replied better for a time. He said well go donate blood but don't mention anything about pv.
While we were talking g he was reviewing my file and said I see she has already diagnosed you with secondary pv so just go back to your pcp we don't need to see you here anymore.
I've set up an appt with my pcp. I will tell her what he said when I see her in person but I will say to anyone, I would not donate blood when there is any chance it could be tainted.
I'm feeling abandoned but the good news is they didn't even find anything to address with my heart and arteries. Not bad for 65 but I'm trying to push to stay active. I lead a very physical active career but fighting this us wearing me out.
I felt really good for about a week after philbotomy then I noticed the draining if energy each day to about 3 weeks it was back to struggling again. I'm definitely going to ask my pcp for it regularly.
I'm interested if anyone else has been told they didn't have it because they couldn't find the primary cause.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

corsair9 | @corsair9 | Oct 8, 2023

How is the uric acid level in your blood?

Twice in the past 12 or so months I have sought second opinions - one for an orthopedic problem and the other for a long-time gastric problem... in both cases the result has been dramatic! It is like being trapped in a maze of confusion when suddenly an opening reveals a wonderful 'yellow brick road'! Ortho-wise the Dr was completely wrong; Gastric-wise the Dr had just been lazy and disinterested.

Orthopedically I was losing the ability to walk. Gastrically, repeated visits to the hospital nearly ended my life. A physical therapist asked me if I ever confronted the original ortho Dr with his error; I replied 'No', what would be the point? ...but my PCP got the point.

Rely on your PCP, but take charge of your case - don't be argumentative but study and ask good questions. If, as was my case, the answers are unsatisfying, look around for alternatives. My PCP congratulated me on both decisions. Your PCP might recommend a doctor at times but their commitment to that choice may be more casual than passionate.

Take charge of your own case. All of my Drs know that I am well informed and appreciate my involvement, but I never 'argue' with them. They soon learn that I have read the results of med tests and have some idea of the consequences of those results... but I only ask questions or make comments.

REPLY
casevin7 | @casevin7 | Oct 8, 2023

I had one doctor tell me I had secondary PV and another tell me I did not. Funny that I can go down the list of symptoms and they all match me to a T. I finally convinced the second doctor to allow me to do labs when I felt that levels were elevating, and to then schedule a phlebotomy on my own. I now have open orders to do both on my own schedule. I can usually tell when its time. I get exhausted from the slightest activity and my torso hurts so badly I feel like it will explode. And then surprise! the labs come back elevated. After 72 years in this body, I think I know it better than someone who only spends 15 minutes with me.

REPLY
1 reply
chella65 | @chella65 | Oct 9, 2023
In reply to @casevin7 "I had one doctor tell me I had secondary PV and another tell me I did..." + (show)
@casevin7

I had one doctor tell me I had secondary PV and another tell me I did not. Funny that I can go down the list of symptoms and they all match me to a T. I finally convinced the second doctor to allow me to do labs when I felt that levels were elevating, and to then schedule a phlebotomy on my own. I now have open orders to do both on my own schedule. I can usually tell when its time. I get exhausted from the slightest activity and my torso hurts so badly I feel like it will explode. And then surprise! the labs come back elevated. After 72 years in this body, I think I know it better than someone who only spends 15 minutes with me.

Jump to this post

My rbc and ht has been elevated since 2015 that I can find on lab reports. I too have severe torso discomfort and have been telling doctors since I was 60 I'm just not feeling good or myself. I will be addressing these things with my pcp. Thank you for your comments and I agree, one learns their own body and know when it's out of sink.

REPLY
Please sign in or register to post a reply.