Good morning, @onthejoedock. These are lovely photos of your handsome husband…so active and vital. But the latter photos certainly tell the story of how things have changed with his health. It is sad when we see our loved ones go through a life altering experience. It can be difficult to cope with for both of you.

I’m a little confused though as to whether your husband has PV, which is a blood condition where the marrow is producing too many red blood cells. Or if he has ET (essential thrombocythemia) which is a condition where there is an over production of platelets. You focused on his platelets. Was his hemoglobin high as well?

Both conditions are treated similarly with hydroxyurea or Jakafi with the goal being to help the body regain a normal production of the excess blood cells.

You also mentioned that his platelets are “still over 350”. (350,000) That’s actually well within in the normal range for adults…normal being 150,000 to 450,000.
So if the focus on taking Jakafi was to lower his platelets that has worked very well for him.
But it will also lower his red blood counts which can lead to fatigue and being easily winded because there is a reduced amount of oxygen being distributed throughout his body. That would explain why he gets worn out so quickly. It’s a horrible feeling and no matter how hard he tries to push himself it will just end in frustration because he may not have enough red blood cells. (Think anemia)

If he has ET, since his platelets are now normal, he may want to check with his doctor about potentially lowering the dosage of Jakafi. There are a number of members in this group who have PV or ET and when stabilized, they’ve been able to reduce their dosages, such as 1 tab daily instead of 2. Or, alternate between 2/1 every other day. That may make a difference in your husband’s fatigue and lethargy.

While nutrition is important for his overall health and wellbeing unfortunately, when there is a mutation causing a blood condition such as PV or ET, a dietary solution won’t reverse this myeloproliferative disorder.

I’d encourage you and your husband to talk this over with his doctor about possibly adjusting a dosage to see if it might make a difference for him. What is his current hemaglobin reading?