As we continue on this roller coaster ride with Polycythemia Vera, we learn more along the way.
Ed had a good week this week. We are hopeful and relieved for the first time in months.
After a call last week from his MPN, his Hydrea is now alternating between 1 pill to 2 pills every other day. His platelets have dropped from 720 to 138. Ed’s hematocrit is holding at 42.7, this is important because under 45 means he will not need the phlebotomy.
I have noticed when his blood levels are stabilized, his headaches are not every day, his fatigue is not as bad. His coloring is much better too. We have made additional changes to diet, along with removing several stressors from our lives.
Ed’s lab work has increased to bi-weekly and his MPN appointments are now back to every 4-6 weeks. This is fine. This makes me feel comfortable. I know it sounds controlling to some, however, when you love someone with a progressive incurable disease/ illness, you worry constantly. I pray constantly also. There is always that fear of a stroke, blood clot, heart attack. Is he doing too much? Is he doing too little? What is the right balance? You tend to keep up with every sneeze, sniffle, cough, etc.
Most would think this is exhausting, I can tell you that it is love. I have lived my life loving many with chronic progressive illnesses and have taken care of them. He is no different. I want his life peaceful.
In an effort to ensure that he is not suffering from any other types of ailments or even an autoimmune disease, his MPN recommended that he see his primary care doctor for additional labs this week and a referral to a rheumatologist. That is what we are doing.
Ed’s muscle, joint pain, and weakness have begun to increase over the last several months. We do not know if it is a lack of exercise, PV related, or arthritis, possibly even something else going on. That is where another specialist comes into the picture.
We continue to seek prayers and stay hopeful.
Thank you everyone for keeping up with his PV journey! Stay tuned for additional updates.