by David Wallace
After experiencing my own “unpleasant….putting it kindly” tango with Poly, I transitioned through various stages of grief and have seen other patients travel a similar path over the last few years.
Rarely have I seen a newly diagnosed patient jump in full bore with both feet, wet behind the ears (but not really), learn an encyclopedia’s worth about Polycythemia Vera in a flash, while also seeking out the best medical care in the country from the outset.
In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a rapid pace, membership presently exceeds 400. The aggressive promotional strategies employed, initially rubbed some Facebook group members the wrong way. A number of “temporarily disgruntled” members joined the group and quickly realized the value of the shared information, knowledgeable leaders and encouraging support. That is confirmed through my own personal experience.
Jason is married with 7 children and runs a successful mortgage company.
From Chaos Comes Clarity and Vision
by Jason Rappaport
Spring, 2013 – If you asked me five months ago what Polycythemia Vera (PV) was, I would have probably given you a perplexed look.
My journey began in New York in May 2013 with a trip to a swim camp in Austin, Texas with two of my daughters. After a few days in Austin, I was not feeling well, overweight and way too much time sitting down gave me chronic prostatitis, which can be very painful when it flares up. I’ve been dealing with this for almost a decade so it did not shock me when I began to feel a flare up. What I didn’t know was where this flare up would leave me. After trying to deal with the discomfort, I finally was so uncomfortable that I visited the ER at Seton Medical Center in Austin. They did their blood tests, urine, called my urologist in New York gave me some antibiotics, pain killers and sent me on my way. I took the blood results, put them in my bag and left (not being told or realizing that HCT of 55 and HGB of 19 was high). I went about my business and finished up my trip not realizing that anything was wrong.
Upon returning to New York, I went back to work and the kids went back to school. A little over a month later I followed up with the Urologist, who after a very uncomfortable examination assured me that all was well and sent me on my way. As I was leaving his office, I remembered that I had the tests from Texas and gave them to my doctor and thanked him again. Upon leaving, he caught me in the waiting room and told me that I needed to go see my primary physician because something was wrong with the blood tests. My stomach dropped and I was paralyzed with fear. I tried to ask him what it was and he said “it’s not my area of expertise.” I told him that I’d make an appointment and he said “no you need to go now,” further raising my anxiety. Not only was my HCT and HGB high, but my platelets and white blood cells were also elevated. I followed his instructions and went on my way. My primary care physician stared at the report and said “this can’t be right” and asked me to roll up my sleeve as he prepared to draw blood. Once he was done he told me to wait while they requested a “stat” analysis. When the test came back (I am now totally freaked out) guess what? Normal!?!?!?! High side of normal, but normal. What a relief. He told me he wanted to repeat blood work in 10 days. I was elated. Not a care in the world, I’d been spared.
After 10 days I went back for a repeat, except this time all of the counts were just “above” normal. I can still hear the words echo in my head “I want you to see a Hematologist.” What was a hematologist? I actually had to look it up. This is where things got crazy. I googled “disorders with high counts” and up pops PV. After reading some more, I saw just how rare it was and thought no way it must be something else. Bad news was the other more common explanations seemed more frightening (Liver or Kidney cancer). My kids faces flashing before my eyes, I made my way to the local hematologist who seemed equally perplexed. He drew blood and again told me my counts were high side of normal. Relief again, until he told me he was doing a JAK2 test. Fast forward 10 days as he calmed me down and said I may have sleep apnea. (Great that’s easily managed). JAK2 negative, YAY!!!!!!! I left his office feeling euphoric. I must have sleep apnea or naturally high counts, I’m fine. Slept great that night.
Next day I start reading more and more and more, until I needed to do something. 2 hours later I was in the waiting room for the Chief of Leukemia at Columbia University Medical Center in NYC, 20 miles from my house. They had drawn my blood before I saw the doctor. When he came in, he examined my spleen, took my blood pressure, etc. He sat down and said you have Polycythemia Vera. I was shocked. I thought he was joking. I told him the JAK2 test was negative to which he retorted “I don’t care what the test says you have PV.” He directed me to follow him telling me that we’d talk while I get a phlebotomy. It was surreal, a bad dream. As they “took off some blood” he portrayed PV as a bone marrow disorder where the body makes too many red blood cells. I told him I read that it’s cancer, he said absolutely not. As he took my blood he explained that the only treatment is monitoring of my counts, phlebotomy and aspirin. He told me “rarely” it could progress into other “stuff” but the chances were very remote. I was relieved. Again I went home feeling good as if it were diabetes or high blood pressure and I just needed to monitor it. I slept great, not a care in the world. Again I had been spared. The next night I lay awake wondering, my JAK2 was negative, how is he sure? Why didn’t he do a bone marrow biopsy like I had read. I slept very little that night.
The next day, the more I read the more distressed I became. Before I knew it I had spoken to Dr. Mesa’s secretary Nicole and booked air to Phoenix. I was going to find out one way or another what the heck was going on. The flight to Phoenix was unlike any other trip that I had taken. I had never traveled to see a doctor. The next morning I was sitting in the Mayo Clinic waiting to see Dr. Mesa. When we met there was an instant calm. Not because the fear had gone away, but I knew I was sitting with an expert. We spoke for an hour as he explained everything. He felt that I had PV based on my blood work, however, he was unsure since my previous JAK2 was negative. After my meeting with him it was a full day. Chromosomal blood tests at 11:00am, BMB at 12, Radiology at 2, and yes a sleep apnea test that night. Dr. Mesa not only spoke to me for an hour but he responded to my frantic emails all night long. He must hate me I thought. I swore to myself I’d hold my questions over the weekend as to not bother Dr. Mesa until Monday for my consultation and results. 20 more frantic emails over the weekend and he responded to every one of them. Monday morning I was sitting again in his office with my wife and parents when he told me with certainty that I had polycythemia vera. I was still in shock, but at least I knew. He explained the disease to me, the treatment options including interferon. He did not push any specific treatment. He explained the risks and potential benefits of Interferon. He referred me to Dr. Hoffman in New York and I was on my way home.
It’s been a roller coaster since then. Every day looking and searching on line to the abstract that will SAVE me….looking for that special gene that I have that will make me special, guess what, I got to the point where there were no more abstracts to read.
Depression….Nope I think We’re Good
I do not think that I have had the time for depression yet, so if I vanish all of the sudden, someone come looking for me 🙂
Much has happened since. I have made new friends. Cary, Jamie, Oggie, Ferdinand, Peggie, Sam, David, Rhonda, Bad Mike and many more. I have bonafide information overload. I will say that I have become more empathetic and have learned as much as I can about MPNs. I have thrust myself into the MPN Community. I’ve had dinner with MPN expert Hans Hasselbalch, lunch with Ross Levine. I’ve spoken in depth with Jerry Spivak and I exchange emails weekly with Dr. Mesa and see one of the best MPN experts in the world as a primary hematologist. You’d think that I’d be set right? Wrong. Despite all of the experts, it does not change the fact that I have PV, it does not change the fact that the future is not as clear as before and it does not change the fact that my life has changed forever. For better or for worse? Yes, I have PV, however, I now eat better, exercise regularly, watch my health closer and have new life long friends. You tell me? Am I better off with PV or without? I can honestly say that I don’t know. By the way, the JAK2 at the Mayo was positive. Apparently local labs don’t use as sensitive of an assay. Benefit #24 of having PV, expanded vocabulary, 4 months ago I had no clue what an assay was 😉
If any readers would like to share your story, please drop me a note. I am very interested in exploring the progression of medical mishaps that lead to an MPN diagnosis. Together we CAN make a difference!
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