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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Thank you. I likely need to go back to the high risk OBGYN & ask why this information regarding decrease in platelets wasn't presented to me. Given my ET they discussed starting me on blood thinners during the course of the pregnancy. Needless to say, it was all highly discouraging & I haven't yet made a decision to try again. I do feel the pressure of needing to decide soon given my age and the fact that the hematologists has explained that my platelet count will only continue to increase with time. I'm at a 615 blood count now and not yet on another type of medication other than the aspirin. The ET diagnosis is still relatively new and very scary for me. Feels overwhelming at times. You've had this diagnosis for nearly 15 years. Do you mind sharing about you quality of life. I'm also curious if your on medication and how long you've been on it if you are. Thats another huge piece that's causing anxiety for me.
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Onset of ET was about age 55 based on past CBCs, diagnosed at 60 thru BMB and CALR mutation test, on HU since age 63 when platelets edged up to 800, now 68.
Occasional blinding visual migraines, brain fog, and fatigue at onset. The docs kept wanting it to be menopause and thyroid. An astute nurse caught the history of high platelets and that made the docs pay attention and get me a diagnosis.
Migraines, fatigue, and brain fog improved after I started HU. Platelets swim around in 400s now with an occasional spike into the 500s. My son was born in my 40s, and my energy levels when he was in his later teens was low. He was a great kid, but I really berated myself for not being the mom who volunteered as I did when he was little.
I take covid and flu precautions and haven't been sick in 3 years, but when I did get a cold, it lasted forever. It takes a little longer for dental work to heal. I have more light sensitivity and increased sensitivity to scents and hair products.
I have a good-enough quality of life, but I am not the high energy person I once was. I had to retire at 63 because I was also doing elder care for my mom. This was a very depressing time and took a big chunk out of my retirement benefit.
I might have applied for disability, but was too proud to do it.
Retirement was very difficult psychologically. I am learning to see the glass as half full instead of wanting to smash the glass in frustration because I cannot do what I used to. I feel content most days now. I sometimes feel lonely. I don't look sick, and family and friends are not very alert to my limitations. But I am learning to accept that this is just how it's going to be.
I've learned to pace myself so I don't become a trial to myself and others. But I am not helpless, and I am not in any pain or prostrate with exhaustion as long as I know my limits.
Do take into account that what I am telling you has as much to do with my own psychological quirks and aging as the ET.
Fwiw, a lot of people diagnosed in their 30s or 40s say they have been on HU for decades and have no symptoms. Lots of research is being done on younger ET patients now.
You were probably not told about lower platelets in pregnancy because your OB doesn't know about it. ET hits only one person in 135,000, rarer in younger people. You may be the only patient with ET he's ever had.
Hope this is useful.