He May Have PV But PV Does Not Have Him!

If you are caught up on our blog you are aware that Ed and I are battling uncurable invisible illnesses. We made the decision months ago not to let these illnesses define us nor ruin our lives. We are not giving up on each other despite the obstacles we may face along the way. From time to time, you will read about our health struggles, our achievements, all while enjoying our local adventures, leading up to our RV dream. Now is one of those times where we give you a glimpse into our private world, the world of Ed’s disease and our fight against it… I say ”our”, because we are a team and battle together.

Let me explain a little about polycythemia vera before we update you on our recent visit to the MPN.

Polycythemia Vera is a type of slow, but progressive blood Cancer.

It is a JAK2V617F gene mutation in >95% patients and Erythrocytosis (elevated total red cell mass) is the most prominent clinical expression of PV.

The symptoms include gastrointestinal issues (an enlarged spleen, abdominal pain, swelling, stomach upset), headaches, body aches, fatigue, itching, tiredness, dizziness and a list of various other symptoms. These symptoms can mimic a variety of diseases and disorders. What’s most interesting about PV is, often it is overlooked, symptoms are so ”normal” to most. Polycythemia Vera causes the blood to thicken, the hematocrit levels are raised above 45, hemoglobin is elevated, red and white blood cells are increased. A CBC blood test can help with determining if PV is a factor.

(Studies have shown that 30% of PV is not diagnosed until after a cardiovascular event).

Once PV is suspected via a CBC blood test, further testing is conducted, such as genetic testing, blood clotting tests, and a bone marrow test, for a true medical diagnosis. These tests are crucial if PV is suspected and diagnosed. Left untreated, all of the research and studies show that patients have approximately a 2-year life expectancy. With treatment life expectancy can be 20 years or longer.

The treatment for PV is a low dose of aspirin, phlebotomies (draining a pint of blood on a weekly basis at least until hematocrit levels are <45, this also causes anemia) and if you are high-risk, chemotherapy drugs are prescribed. This is only a general synopsis of the disease.

Having PV greatly increases the risk of heart attacks, strokes and blood clots. All due to the blood being thicker, thrombosis and vascular issues.

Ed’s story goes like this, we began seeing each other in October of 2018. He was always tired, fatigued and complaining about his stomach. By December the complaints included headaches. We thought it was his work schedule. He also struggles with insomnia, the fact is he works nights, that does not help these matters.

Onto January of this year, I made an appointment for Ed to see a gastrointestinal specialist, during that visit, a blood panel was conducted along with a general exam. Ed was scheduled for an upper endoscopy. Once we received the blood work, I noticed that his red and white blood cells were raised and his hematocrit and hemoglobin levels abnormally high. I began questioning the nurse practitioner, I was simply told that further bloodwork would be conducted in a month. A couple of days later, after the endoscopy procedure, I spoke with his actual doctor regarding my concerns. I requested that the bloodwork be repeated with additional labs added. Low and behold when the results came back they were worse than before. Ed was referred to an oncologist/ hematologist. We were very alarmed and honestly, I was a bit scared. I was in a fairly new relationship, I was already attached to Ed, I knew his well being and health would not determine the outcome of our relationship, there would have to be other factors to determine that. I began researching and exploring exactly what these blood results could mean and the diagnostic outcome. Three blood disorders surfaced in each search, PV being the worst outcome.

Okay, to shorten the story a bit, during the first oncologist visit, she confirmed my suspicion and biggest fear of PV. Genetic testing was needed for a definite medical diagnosis. By the second appointment, we had our answer, it was polycythemia vera, no doubts! The phlebotomies began, the chemotherapy drugs we’re prescribed and the low dosage of aspirin. The doctor we were seeing during that time gave us discouraging news, limited information as well. The majority of our information came from internet research, both the doctor and the internet stated a life expectancy of 10-15 years if we were lucky.

After several weekly appointments, phlebotomies, taking Hydrea twice a day and what we felt like was grimness, seemed to increase Ed’s fatigue levels.

One Sunday during dinner with his parents the conversation arose regarding transferring to UVA, (this is a teaching hospital located in Charlottesville, Virginia). Great idea!

I began the process of requesting an appointment and record transfers. Very quickly he was accepted, one catch, there was a 6-week wait for an appointment. On our first visit to UVA, we were extremely impressed with the nurse and the doctor. ALL of the information that was discussed with us gave us hope, lots of hope!!!!! Positive information!!! To add to our excitement, Ed’s doctor is an MPN, she specializes in his disease. What is an MPN doctor you may ask? A doctor that specializes in myeloproliferative neoplasms (MPNs)” by which bone marrow cells that produce blood cells develop and function abnormally.

We learned the studies online were outdated. His doctor wanted additional tests to shed light on his disease and the progression if any. She immediately took action by taking Ed off of Hydrea, the chemotherapy medication prescribed by his previous doctor. That day he did not require his normal phlebotomy, his labs looked good. We were told Ed could live a normal life and we had 20 years if everything went fine. He needed to eat right and stay as healthy as possible.

After Ed’s bone marrow biopsy, the results confirmed no scaring (this disease while progressing can turn into leukemia and other bone marrow cancers). We were informed additional genetic testing conducted proved he did not have other genetic mutations, his blood did not have a clotting issue at this time! His labs would be scheduled once a month and follow up visits scheduled with his specialist every 3 months.

Now fast forward 5 months later, to our visit this past Wednesday

Ed had his 3 month follow up with his specialist for polycythemia vera. During our visit, our first stop is always at the lab for a blood panel, then we visit the doctor to discuss and review his lab results, how he has been doing since his last visit, any changes, etc. These appointments are very important, they are detailed and determine how he will be medically treated each time. He must give information as to sleep, body changes, fatigue, itching and so on.

We find out that Ed did not need a phlebotomy again, his labs are wonderful…

His specialist said his labs can be scheduled for every 2 months and follow up visits with her are moved to every 4 months.

So far Ed has been phlebotomy free for 5 months, his fatigue reduced more and more for 3 months…

There are still days that Ed is tired of course, we expect this, he has to watch what he eats (protein and iron has to be limited, they want to keep him anemic), he can’t take supplements or vitamins. Days seem to be getting easier and Ed is more productive. His fatigue is subsiding, we spend more time together, he spends less time in bed. We enjoy long drives, trips to Shenandoah and Blue Ridge Parkway, or wherever else we may end up for the day.

Several people have asked me in the beginning of Ed’s diagnosis and even now, why I stay with him because his health limits our life. It’s simple, I love the person he is, I also have health issues too that limit our life. Life is a balance as are relationships, you have to weigh out everything when you are with someone. There are pro’s and con’s. I have weighed them, I have never met nor been with someone that encourages a better me, someone that I enjoy spending so much time with, someone that will call me out on my bull, sees me through my faults and still accepts me, someone, who I can laugh with and especially someone who can accept the fact that I am a goofball and laugh at myself. Being with someone who doesn’t make promises too is huge because they can’t break them. Never expect perfection. No one is perfect. Ask yourself, if you had an invisible illness, would you want someone to give up on you based solely on that illness? Wouldn’t you want them to take into consideration the type of person you are and wouldn’t you want someone to stand in that battle with you? We are all dying, we are just choosing to live during that time!

We have so much support from family and friends. We are grateful, thankful, hopeful and happy.

I pray every day for his health. I thank God for this man despite his invisible illness!


Stay tuned for updates and as always, thanks for reading. Questions and comments are welcome and don’t forget to follow us on Twitter, Facebook or right here on WordPress!


Be on the lookout for our upcoming announcements to raise awareness for PV and invisible illnesses.

Categories: Blog