PV and fatigue

I might see if I need to come in and have a vampire visit LOL. I have never had one before. I guess that's a good thing if he thought I needed one he probably would have told me to come in and sit down so he can take my blood LOL. One thing I will say that has helped me he is being on a blood thinner, I did experience a blood clot between my heart and lung about killed me but God is good I made it through I give him the glory and the praise. Keep up the good attitude it's nice to see somebody having a good personality while experience some of the things we have to go through we will make it through the grace of God Amen.

Whether your doctor follows your hemoglobin or your hematocrit shouldn’t matter. As a retired medical technologist, we were taught to use one to double check the other. The hematocrit should be 3x the hemoglobin. My hemoglobin is 12 and my hematocrit is 36. The only thing that might affect this is if your red cells are very large, as immature red cells can be.

I was diagnosed in April, got total relief from the crashing headaches after my first 2-3 blood draws. Now I'm down to maybe 12 hemoglobin, could be little lower and I'm likely in an anemic state now which causes fatigue. When I go next week I don't want a blood draw but I'm going to ask for a Saline infusion to help me feel less fatigued. I've had about 5 pints taken in less than 2 months. HemoOnc doc wanted to bring me down to 11, I know now this is not a good number for me. Once I find the right number to feel better and less fatigue they think it might only be 2-3 blood draws a year, easy peasy as my grandson says. I'm on no meds other than low dose aspirin and my 10mg statin which I've been on for a few years now, hereditary cholesterol.

If your hemoglobin is 18 or higher I would ask for a couple therapeutic phlebotomies, I call them blood draws (or Vampire Visits 😉). My regular GP wrote the initial script for me to get that going while I waited for an appt with an oncologist. My GP is an MDVIP doc (concierge) and an excellent diagnostician. I did not like the 1st HemoOnc doc at all, arrogant and said I don't think you have PV which caused me even more delay. My next HemoOnc doc was/is wonderful, love their NP (she's teaching me how to read and interpret my numbers) and their infusion center, they're all my buddies now. Helps to make friends in those areas.
Best of luck, this Forum has been a game changer and I feel God has a plan for me and it's to help others with this disease once i have it under control.

We can all live a nice long and quality life with PV as long as we listen to our bodies, take excellent care of outselvee and line ourselves up with the right docs. Drink TONS of water, one of the most important things you can do. Dehydration makes your hemoglobin go up.

It takes a village 💪 ❤️

My doctor felt my belly but didn’t say anything about it. That will be a question I have for when I see him again. My liver enzymes were high but I’m guessing that has to do the thickness of my blood. I meant to ask him about it at appointment, but forgot.

I found the Hydrea was knocking me out when on 1 500mg 7 days week. Spoke to Haematologist who reduced to 3 tabs per week. As hydrea are chemo drug, I wasn't happy with that. I believe there are other drugs for PV which don't come under the category of chemo. Havn't had a venesection for months as hct was within the normal range. Had seen a post on here where someone suffered from sleep Apnea, which apparently is linked to PV. looks like I have the condition, didn't have it confirmed but told my snoring can be heard next door😆Mentioned this to Haemo assistant, she nearly threw a tantrum😬said my PV Ruba Vera was confirmed via blood test almost 2 years ago this month! Sure I told her I knew that full well, sadly but thought a chance that snoring! may have helped to trigger off clot in lung🤔Am already on blood thinners since the year before resulting from a clot in leg.
Also suffering hair loss from hydrea, God knows my hair was always very fine so could do without that side effect from hydrea. Have to investigate an alternative PILL & see how I score!!

I will forget questions too, I will get a couple of answers and forget others.

I’m losing hair too and am upset about it. Just 3X a week now and it has that bad of side effect? Also tiny brown spots like sun spots on my skin. I hope it stops 😩