Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

So..we got the Winrevair aaaaand

A myPHteam Member asked a question 💭
Slc, UT

His hemoglobin was too high (due to too many red blood cells) by ONE FREAKING PERCENT above the high end of the normal range! We have the med in our fridge and aren't allowed to touch it until his slow a$$ Dr dinks around to "find the cause" of the high red blood cells!!! Question, when I googled what would cause this, I get back PH, HIGH ALTITUDE (UMM UTAH COUNTS YEAH?), SLEEP APNEA, ALL OF WHICH HAVE A CHECK NEXT TO
my question, is 1 percent above the normal range seriously "pretty… read more

+3
January 26, 2025
 · 
Reactions
A myPHteam Member

I like the AI response. I'd look at getting a second opinion if you can.

January 26, 2025
myPHteam

It sounds like you're dealing with a very frustrating and concerning situation. Elevated hemoglobin and red blood cell counts can indeed be linked to pulmonary hypertension (PH), high altitude, and sleep apnea, as you mentioned. These conditions can cause the body to produce more red blood cells to compensate for lower Show Full Answer

It sounds like you're dealing with a very frustrating and concerning situation. Elevated hemoglobin and red blood cell counts can indeed be linked to pulmonary hypertension (PH), high altitude, and sleep apnea, as you mentioned. These conditions can cause the body to produce more red blood cells to compensate for lower oxygen levels. While 1% above the normal range might not seem significant, in the context of PH, even small changes can increase the risk of complications like blood clots, which is why your doctor may be cautious.

Therapeutic phlebotomy can help reduce the risk of clots by lowering hemoglobin levels, but it must be carefully managed to avoid causing anemia or other issues. Your pulmonologist's suggestion of monthly phlebotomy aligns with common practices for managing elevated red blood cells in PH, but your current doctor may be hesitant because they want to ensure the underlying cause is fully understood before proceeding.

It’s important to advocate for Jason’s care and ask for clear explanations from his doctors. If you're not comfortable with the current plan, consider seeking a second opinion from a PH specialist with more experience. Blood clots are a serious concern, and anticoagulants or other preventive measures might be worth discussing further.

January 26, 2025
A myPHteam Member

Call the pharmacy who sent the medication to you and talk to a pharmacist. Be thankful your Dr ordered blood tests. My pulmonologist never ordered blood tests for me. I decided not to take Wynrevair at this time, as I don’t want anything in my system for three weeks, due to many allergies.

January 30, 2025
A myPHteam Member

I also like the AI response. This must be so frustrating for you. And I agree with Julie about trying to get another opinion if possible.

January 26, 2025
A myPHteam Member

So not has he only not ordered blood thinners to help with preventing his blood from clotting but he's also said not to get the therapeutic phlebotomy for the potential to blood clot either so he's just leaving him sitting there with his " " concerning levels of potential blood clotting amount of red blood cells

January 26, 2025 (edited)

Related Questions

View All

Isn't Alaska Splendid!

A myPHteam Member asked a question 💭
Sterling, CO
July 25

How Are the Lungs and Heart Connected in PAH?
5 Facts About How the Pulmonary Artery Functions
The Importance of Trusting Yourself