If you have been following along I was diagnosed as having the JAK2 mutation and an MPN about a month ago. In this month I have been doing research and looking at what symptoms I already have and seeing how things will progress. Basically just trying to settle into what to expect and where to go. I still have a lot to learn.
Today was my now regularly scheduled monthly visit to the doc. Remember last time the doc said that I needed to be on a baby aspirin a day and that because my hematocrit was high that they needed to take off a pint of blood and we would revisit this monthly. Today I left for the hospital at 6:00 am so that I could make it there a little early to get a blood draw before my appointment. My doc was backed up due to an emergency this morning so it took several hours to get me in to talk with him.
We walk into his office and he says "well let's see what's going on. " He looks up my blood test results on the computer and starts asking a few questions. The first was "How has this summer been for you?" I replied with that it had kind of been a lazy summer. Then he asked what I did for a living again, I explained that I work full time, I run a farm part time, and a small business another part of a time. Which he replied "So not so lazy" I said "well I don't feel like I have done much this summer in comparison, I'm just tired." At that point he asked me how long I had been tired and I told him that Alicia and I were discussing that just the other day trying to make sense of things and I am not really sure. He tells me to take off my shirt and hop up on the table.
I then asked him "What are you thinking?" and he replied "Lots of things", and I kind of laughed. He felt around at my neck, my arm pits, just at the belt line on both sides, then started asking more questions. "Do you have any food cravings?" I replied with no that my diet is pretty regular nothing different that I can think of, then another "any other weird cravings?" I didn't know where he was going and he said "do you like ice?" I said no "What about a craving for dirt" I said no. He asked about the color of my stool, I replied that I thought it was pretty normal. He then asked about indigestion, or heartburn. I explained that a few years ago I had quite a long battle with it and I couldn't eat red sauce or spicy food without taking zantac or something like that. He asked if I ever went to the doctor for it and I said no it just eventually went away for the most part. Then he said that I was iron deficient, and that could be the cause of me feeling tired as well. He put me on an iron supplement but said that we have to be careful because it will raise my hematocrit again and we would definitely need phlebotomize if it got high again. He also wanted to get some fecal occult blood tests done to see if I was bleeding in my stomach just to be safe. So I have a few of those to do here at home and send in.
My iron pills should be here soon and I should take one a day for now. In 10 days he said I should be feeling better with more energy, if not to bump up to two a day, then three. He said he really would rather me stay with one so as not to change my hematocrit too much. Then we meet again in another month, for another blood test and possible phlebotomy. So hopefully the iron supplement will help with energy without messing everything else up. And I get to send fecal samples, so...
Other MPN Resources.
Denial, Anger. Bargaining, Sadness and Acceptance, My stages of grief realized.
Found this NCCN Guideline for MPNs today. I think it is a pretty good resource.
Today marked my monthly visit with oncology, Today we start a new journey in this fight.
ASU, Mayo Clinic and University of TX are looking for MPN Patients to participate in a new study using yoga
Welcome to the new MPN Journal site.