Essential Thrombocythemia: Looking for information and support

I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I was misdiagnosed with Von WillIebrand Disease initially and went for a second opinion. I do not have Von WillIebrands, but do have ET, JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. It is a life altering, terrifying diagnosis to face, especially at my age when there are hardly any studies to be found on people my age with ET. Life expectancy is a very scary unknown for me, especially with 4 little kids that I would love to be here for for a long time! It's terrifying to think about not being here for them, but stressing over it will do nothing, so I try not to. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET that he or my high risk OB had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since

You’re so welcome. I’m glad you found the tips useful. That’s how I’ve been living my life the past 3.5 years after my bone marrow transplant. That happened before Covid was even around. But the precautions required post transplant was good training for Covid and it’s been working for me.

I think one positive thing that has happened with the Covid pandemic is people who are immunocompromised are less embarrassed to wear masks in public to avoid illness.

Do you get out with friends and family often?

Thank you for your comment about daily living tips to help fight off infections.

It was a nurse who got the ball rolling for me, too! I have a nutty extended family, and the GP thought it was all stress related. Bless nurses for their concern and advocacy. Love them!

Doing better now - off HU for 5 days and now back on every other day. So far...all is good. Thank you for your information.

Kudos to the nurse practitioner! So glad you are doing better. I'm hoping the new internist I'm seeing in few weeks will take this seriously. Happy Holidays ❤️

Hi Wiggins32....My nurse practitioner was the person who found the causative factor of my high platelet count by doing a JAK2 blood test. That took about two weeks for a diagnosis to emerge and a gene mutation was the causative factor for the high platelets and low iron for me. From there, she referred me to a hematologist/oncologist and he is the one who ordered the bone marrow biopsy. He did that to make sure that was all that was going on with my elevated blood platelets (no other type of cancer). I am fairly new to this forum and this diagnosis - ET or Essential Thrombocythemia, so I am learning as well. Be your own advocate.....my Primary Care Physician blew me off when my platelets were high - over 600 - last March - said it was no big deal. I am so glad that I happened to "only" see his nurse practitioner in August - she hit the ground running looking for and testing for any reason that the platelets were over 600. She is the one who ordered the JAK2 blood test. My oncologist was amazed with her. She was methodical with her approach and he said she did everything right. My iron was low and she put me on a low dose of supplemental iron. I was so blessed and will always be so grateful for her aggressive approach. I am doing much better now - had an initial outbreak of mouth sores from the Hydroxyurea they had prescribed. Was taken off for about 5 days and now back on for every other day and doing nicely so far. Platelet count is in the normal range now. Hoping you get the clear diagnosis soon.
Ginger

Hi @marthajones. Having Essential Thrombocythemia and being on on Hydroxyurea, your immune system won’t be as robust as it was before ET. So you’re right to be concerned about avoiding Covid and the Flu. Your body may have a more difficult time fighting off infections.

But that doesn’t mean total isolation. There are millions of us who are immunocompromised and living fairly normal lives…just exercising caution.
Avoiding large gatherings of people who are not wearing masks is a first step. But that doesn’t mean you can’t go grocery shopping, out to the theater or visit with friends.

Distancing and minimizing exposure helps. Choose less busy times when shopping. Eating out does pose a problem though so if you can find outdoor venues that’s important.
Keeping up with vaccinations is another key. Wearing a mask in public settings or in gatherings of people is an important factor. Frequent hand washing, using hand sanitizer after touching door handles or objects out in public is a good idea.
I wear a mask anytime I’m in a public building or even someone’s home with people not in my ‘circle’ of protection. My husband and I both wear masks when we’re in stores.
Our kids came for Thanksgiving. They both work in a public setting and they flew to Florida from Minnesota and spent 5 hours in the busy Atlanta airport. They kept their masks on all day during travel. But still, anytime we were in the house we all wore masks. I love my family for protecting me so that we can still all be together.

☺️ It’s not a big deal to wear masks. Not to jinx anything but wearing them has managed to keep us safe for several years. Also, anytime someone is visiting us, whether friends, relatives or servicemen coming into our home for business, they are requested to wear masks. Only one time was it an issue. Most people are fine with the simple request.

I found some other discussions in our forum related to members who are immunocompromised and also had similar questions for how to be out in public.

Essential Thrombocythemia and viruses.
https://connect.mayoclinic.org/discussion/et-and-viruses/?pg=1#comment-759044
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https://connect.mayoclinic.org/discussion/lower-lymphocytes-following-chemo-2-years-later/

What are you doing to protect yourself? Do you feel isolated?

After a diagnosis of Essential Thrombocythemia just before the Covid outbreak, (with Hydro treatment and fluctuating labs just in and out of normal ranges) I've been extremely cautions and fearful about risk of infection. I'm wondering what level of risk and the need to avoid normal activities that include things like grocery shopping, going to dinner parties, other interactions with people that one needs to take. Have others with this diagnosis and treatment reduced or elminated their interactions with the public?

I had a couple of mouth sores at the very beginning, in addition to the mouth rinse drinking water will help. I started drinking water out of a 24 oz bottle (about 4 a day) and I haven't had any more symptoms at all. My hemo tpld me you want the meds in your body but you want to wash it out as soon as possible. I do spend quite a bit of time in the loo but I try to deal with it as best I can.