Husband diagnosed with ET (CALR exon 9)
My husband (34) was diagnosed with ET with a CALR exon 9 gene mutation a couple of years ago after a routine blood test showed elevated platelets. (He had the bone marrow biopsy and everything)
He's a bit of a hypochondriac and was always worried that he had some kind of condition, so he hadn't gone to the doctor for well over a decade for fear of what they might find (even though he appeared completely healthy). So, you can imagine that when he finally went, how devastating this diagnoses was to him.
When he was first diagnosed, his platelet counts were in the 600-700 range I believe, so he was put in the "low risk" category. They have fluctuated but not changed significantly until his most recent blood test this past week showed that they were at 933. We're both a little freaked out, and he's going to start having blood tests done every 12 weeks to monitor before they consider treatment. So, I guess we're still in the "watch and wait" stage. He takes a baby aspirin every day.
In terms of symptoms, I guess maybe fatigue and not feeling hungry. The fatigue isn't serious, and I don't even know if it's a symptom of ET or because of our lifestyle (both of us have desk jobs and we aren't super active, and we could stand to have a better diet), but he's been falling asleep on the couch every night and every morning he says he could use more sleep, even if he's slept 8 or more hours.
He has also complained about not ever feeling hungry. I've read that this can be because of an enlarged spleen, but I don't think he's had any other symptoms of that? Not sure if that's a common symptom that anyone else experiences. He doesn't get full fast, and almost always is able to finish my plate for me on top of his, which I know that getting full fast is also a symptom.
After this most recent blood test, he has decided to quit nicotine (zyns) and is abstaining from alcohol for now. We are going to start going for more walks, and I want us both to get serious about eating better. (We indulge in the occasional fast food and pizza, but that's about as bad as it gets honestly. Otherwise we eat pretty good when we do cook at home.)
I've seen several people mention finding an MPN specialist, which there are only 2 in Michigan that I can find, but I will have him talk to his doctor about getting a referral to one of them (unless you don't need a referral, I dunno, I'm new to all of this!!)
I guess I'm coming here to ask how I can best support him, and how can I reassure him (and I) that everything will be okay? He's incredibly stressed and worried about having a stroke, or a blood clot, or developing Leukemia. How do we keep from spiraling and thinking every change to his body or how he feels is a symptom? Is there anything else we can be doing to help either decrease his counts, or prevent them from going up? Anything more we can do to help prevent blood clots/stroke/heart attack? (aside from the obvious exercise and better diet.)
Any encouraging words to help us not despair would be greatly appreciated. We've been trying to start a family, so the fact that it's progressing so fast is making me feel like maybe we shouldn't have kids. I don't want this diagnoses to put our life on hold, but I also want to be realistic.
Thank you :')
Sincerely,
a concerned wife