The beginning of my MPN

I was just diagnosed with an MPN and I decided to add this area to my website to tell my story and to make a journal of the process of the disease. First I want to tell a story about how this all came about and about how I was diagnosed. This is a bit of a long story as from beginning to end took about six or seven months.

It was a cool day in February 2017 when I was working on putting up a fence with my girlfriend around our backyard so that the dogs had a bigger area to run loose and not have to worry. We live in the country and small dogs and coyotes don’t mix. The type of fence that I was putting up was field fencing with T-Posts. The fence was almost done, I was literally on the very last post and happened to be in some very hard stubborn ground. I was pounding the last post in when what happened next is still a little bit fuzzy. I don’t know what occurred or how it happened but somehow the post pounder bounced off the t-post or rotated down and struck me in the head. I remember saying some choice words, I remember thinking “the pounder is still above my head, get rid of it” then I remember nothing. I came to with my girlfriend over me saying my name. The first thing I did is reach for my head and pull my hat off. My hat and my head, and the ground were covered with blood. I asked my girlfriend to go get me a damp cloth and some water. Now I am your typical stubborn male and did not feel that I needed to go to the hospital, my main concern was to stop the bleeding and then get back to work. As I sat there on the ground, I noticed that my face around my eyes and nose all the way back to my ears were tingling and felt odd, but I still did not think I needed the hospital, I figured it wouldn’t last very long. As I sat there the tingling and the “odd” feeling appeared to be getting worse and the bleeding would not stop. I told Alicia to go ahead and get our daughter ready and get stuff together that we were going to the hospital. She sprang into action because well, we have been together for 13 years and if I ask to go to the hospital “it must be serious”.

So we pack up the car, put up the dogs, lock up the house and start to load up, my daughter looks at my face and sees the blood and kind of panics. I explain to her that it’s ok, everything will be fine, we just need to get my head checked out. The hospital is about an hour and a half away. So Alicia drives and I sit in the passenger seat with a towel around my shoulders and a wet washcloth on my head to help stop the bleeding and keep it moist so it doesn’t crust up in my hair real bad and make the doctors poking and prodding hurt worse.

We arrive at the VA hospital ER and step up to the front desk, the man behind the counter looks at me and says “Sir are you bleeding from the head?” I kind of laugh and proceed with “A little bit” as my face and head is covered in blood. They give me a red folder and I get taken to the back immediately. A nurse kindly cleans the dried blood from my face and then they take me and look at the wound. They advise that it is going to need staples then send me to get a CT Scan. Alicia and my daughter end up getting brought back to sit with me after the CT scan and we wait for the results. Eventually they come in to staple me back up. They gave me two options, to have some pain killer injected which will hurt or just man up and get the staples done without any pain meds. I chose to go with out and in hindsight was probably a mistake. The first one wasn’t bad, the rest got progressively worse. And the burning sensation after was not much better.

They take some blood as standard procedure and a little while later the ER doctor comes in and says your brain is bleeding we have to transfer you to another hospital because we do not have brain surgeons here. An ambulance is coming for you and will take you there. Immediate fear sets in at this point for myself and my family. The ambulance comes, I am moved to another hospital, they get me in to get a CT scan, followed by an MRI and I wait, and wait and wait. The doc comes in and says, I don’t see what they see, I don’t see a brain bleed. You are free to go home. So I do, I didn’t go back to the VA, there were no more instructions to do so, So I went home with a prognosis of a concussion, with some pain meds so that I could sleep which by the way was not all that possible.

A week later I return to the VA ER to get the staples removed from the back of my head and the ER doctor (different from last time) was very concerned that they just released me with no further instructions. So he sends me for another CT Scan, another MRI and schedules a follow up with a closer VA clinic. When I go for that follow up appointment the doctor gives my brain a clean bill and says that the concussion will last for a while. He then starts pointing of the results of the original blood test, he says my platelets were a bit high at 450k but that could be directly related to the blood loss. He orders a follow up blood test in 8 weeks.

8 weeks come and go, I go in for a blood test, go back to the doc and he states that my platelets and red blood cells are still high, as a matter of fact they are higher than last time at 650k+. He says let’s do another follow up in 8 weeks. Repeat that process several times, with my platelets going up at least a little every time. During this time he never said what could high platelets mean, he never mentioned cancer, he never mentioned anything really. So I start googling high platelets. Let me tell you if you are waiting on information about health, sometimes Google is not your friend, trust me. Google says leukemia, cancer, cancer, cancer and more cancer. Queue “holy shit I’m going to die” mode. I worry a lot inside, I hide it as best as I can from my family. Then I was told there was a referral to oncology/hematology, that did not help my state of mind at all.

I waited for an appointment still googling and making myself worry more and more. My first appointment with oncology/hematology came. Unfortunately that day the entire hospital computer system was down. I did get to talk with the doctor and we couldn’t get into details because he could not get to my records but he said that we needed to do a few more blood draws and tests over a period to see if anything changes. However based on the information he had looked at previously and because I use to be a smoker that he wanted to do some chest scans because it could have very well been lung cancer causing my counts to spike. He did start to explain myeloproliferative neoplasms (disorders) and stated that it could be one of those so he also wanted to add an order to get tested for those mutations. He explained it to some degree, then sent me to the lab to get another blood draw and scheduled my chest scans.

I waited a while to get a call to actually schedule a date for the chest scans and waited on the results from my blood test. A few weeks later I went in and got my chest scans, at that time I tried to see the doc to find out about the blood draw but he was booked up completely and could not answer any questions. So I waited worried some more, for the next follow up appointment.

September 7th, 2017 I was scheduled for a lab at 10:00am then my appointment with oncology/hematology at 11:00am. While waiting for the appointment I got the results of my blood test. I mean I can read them to some degree but it is all kind of gibberish to me, I can see that my platelets are still high, I can see that my red blood cells are high, then I notice this little note at the bottom which was greek and concerning at the same time. “~MPL Mutation *REF *** Call XXXX!!!!*** Note Performed: 8-28-17 By XXXXX *NP Reason: Specimen did not meet Requirements.” Followed by another “~NP Mutation *REF 2 *** Call XXXX!!!!*** Note Performed: 8-28-17 By XXXXX *NP Reason: Specimen did not meet Requirements.” Well what in the holy heck does that mean? Did they send something wrong, was there not enough blood? Did they find something else? CRAP, now I have to wait some more.

The day finally comes, I took the whole day off of work and being that the hospital is 1.5hrs plus away and that it’s the VA generally the earlier you get there the earlier you get out. I got to the hospital at 9am. I go to the lab, and they say that there are no orders in the system for me, to go see my doc to get the orders. So I run upstairs to ask if I still need a lab and if so to please put in orders. The receptionist says no there are no orders and just to wait for my appointment. Now I basically have two hours to kill. So we all sit outside, my daughter does her homework, Alicia reads and I play soduko on my phone. Finally it gets close enough to go ahead and check in and wait for the doc who is over booked so I don’t actually get in to see the doc until about noon. Since the last time the computers were down, the doc wanted to go over my history and look at all the brain scans, chest scans and all that jazz. First thing he says was he thinks the brain bleed issue from February was completely false and ER kind of jumped the gun. Cool so my brain was never bleeding. He says the brain scan looks clear and nothing to worry about there. Sweet no brain tumors. Then he looks at my chest scans, he says that there is some scarring from a previous infection or something but otherwise they look clear. Sweet no lung cancer. Then I mentioned the cryptic message from my blood test and that it said the tests were not performed. He gets a puzzled look on his face and pulls up the blood results. “Oh that’s why!” He says somewhat excitedly. And I wait for the next part but there is a knock at the door and another doc comes in to get advise on another patient.

He runs off for a few minutes and comes back. Keeps looking at the computer for a few minutes and says “You have the JAK2 mutation, so that is why they didn’t do the tests. There really is no need.” To which I reply “Well what does that mean?” He starts to get into myeloproliferative neoplasms (MPN) and what that means and then stops and says “Are you sure your wife and family don’t want to be here for this because I know my wife would kill me if she wasn’t in here?” So I go get Alicia and my daughter and we get the official prognosis that I definitely have an MPN. He explains it all to all of us we go back and forth with questions. What does it mean, what do I need to do, treatment, anything I need to change? etc etc so on and so forth. He explains it could be ET (Essential Thrombocythemia (ET) or PV (Polycythemia Vera (PV)) but knowing which one it is right now is not that important because he has had patients switch back and forth in the early stages. He says that diagnosing this in somone as young as I am is rare (I am 35) and that we just happened to catch it early. He says as far as treatment, as of right now he doesn’t want to get too aggressive, just take some aspirin every day to decrease the risk of stroke but that another one of my counts is on the high side and because of that he wants to take a pint of blood out to help offset that. Other than that we will meet once a month, get blood draws, determine if they need to phlebotomize more blood to keep my counts under control. He asks the nurse to take a pint of blood, then send me on my way. A few hours later in waiting for a seat to pull the blood, then I watch them take my blood and throw it away and I am on my way.

Looking back now, I have had symptoms of this for as long as I can remember and some newer symptoms that I just tacked up to being busy. For the past year or so I have been so tired, exhausted even. I mean it’s not like I have no energy as I do but sometimes I’m just done and all I want to do is sit or sleep. Then there is the itching after showering or getting out of a pool or getting really sweaty, doc mentioned that while we were talking and I just always attributed that to dry skin or something. So now I continue this journey and hopefully will make regular updates here on any changes, the process, treatments and more.

Thanks for reading and make sure to check out the MPN Research Foundation for more information on the disorder.

Here are some other #BCAM images.

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