pulmonary hypertention

[AllEars]

developed pulmonary hypertension after having phlebotomys

[LIGEBA]

Hi Allears. Did you dr. Explain any connection between the phlebotomies & the pulmonary hypertension? What was the connection? Thanks.

[AllEars in reply to LIGEBA]

Unfortunately he did not!!

He just said avoid any more phlebotomy's because you need all oh your nutrients!!! In fact he connected with my hematologist and they agreed to raise my hematocrit to 48! Im on a tight robe with my diet! And actually my Hct has been in liw 40’s for 8 months…the real problem is heart failure, the right side of my heart is working too hard and the pressures are too high, all from working too hard because of the blood clots in my lungs! Also he wants me to take diuretics because i have too much fluid. Im only eating veggies and protien, no grains or starchy vegies…no fruit, thats how I'm keeping HCT low. He does not want me to drink too much water.

Hope this is too much info… thanks for asking!

[LIGEBA in reply to AllEars]

Thanks for your response. I'm sorry to hear you are experiencing all these issues. It certainly sounds like a balancing act for you daily. I hope making the adjustments your doctors have suggested work well for you.

[RobPV]

I've never heard of pulmonary hypertension... I've heard of hypertension or pulmonary embolism... but never pulmonary hypertension. I have PV Jak2 +. I also have hypertension and therefore I am at risk of a pulmonary embolism. I am assuming... and maybe I shouldn't... are you American by any chance??

[EPguy in reply to RobPV]

PH is different from common hypertension. The extra pressure is contained within the lungs and heart so it's not directly measurable nor always fixable. I'm aware of it because it's common in Sjogren's disease.

This site has a good discussion:

mayoclinic.org/diseases-con...

Interesting that MPN is mentioned:

"Causes include:

Blood disorders, including polycythemia vera and essential thrombocythemia."

[AllEars in reply to EPguy]

Thanks for that link….my pulmonologist wants me to do balloon angioplasty on the clots in the lung… hopefully to ease the pressures in the heart.

Waiting for schedule now…very hopeful. In the mean time walking Alot. Many things to be grateful for ….its not painful, just get breathlessness on exercising. I do wish my fatigue had not been blamed on my PV but on my blood clots!!!

Thanks again!’

[AllEars in reply to RobPV]

Yes American