So what’s up with those platelets? (get it?)

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ET-Overachieve

Yep, here we go again. If you’re a long-time PD reader, you probably know about Jill’s (and my) weird platelet back story. If not, you can catch up at my ancient blog post, “Blood disorders and all that gooey nonsense.”

To sum it up, I have “Essential Thrombocytosis,” or “E.T.” (please, spare me the alien jokes). It basically means my bone marrow produces too many platelets. To read about the myriad of symptoms E.T. can produce (and believe me, it’s one of the more benign blood disorders), click here. And for the record, I do not have bloody stool.

I’ve addressed this disorder in my strip because there are very few things about myself that I don’t address. I also like to bring attention to E.T. because it’s an orphan disease and does not receive a lot of press or funding for a cure.

ET_Lexicon_c

I wrote this particular story line because after years of holding pretty steady, I found out my platelet count had shot up considerably. Stronger meds were recommended to prevent serious problems.

Going on those meds was pretty scary. That first week it felt like I was jacked up on 50 cups of coffee. Then I would get killer headaches. The good news: after experimenting with the dosage, my side effects disappeared and my platelet count started going down. So far, so good. We’ll see.

In the meantime, between the two capsules and baby aspirin for the E.T. and all the vitamins I take to prevent the symptomatic migraines, my pill sorter (yes, I have a pill sorter) resembles that of an ailing octogenarian’s. Thankfully, this also gives me superhuman powers and I can leap tall buildings in a single bound. Not really, but I can do my 6 mile running course without upchucking.

And thank goodness there are meds. Still, E.T. and its blood sisters — polycythaemia vera, primary myelofibrosis and chronic myeloid leukemia — could use a little more help in that department. If you’d like to find out more and help out folks like me, go the MPN Reasearch Foundation and make a donation.

And keep reading the story line. You might learn something. I sure did. Like how the symptom, “transient ischemic attack,” is a mini-stroke. Good to know.

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15 thoughts on “So what’s up with those platelets? (get it?)

  1. I really like your comic strip. I look forward to reading it everyday. I often go back and read previous strips. I would like to say a prayer for you and your struggle with E.T.

    May the one who blessed our ancestors, Abraham, Isaac and Jacob, Sarah, Rebecca, Rachel and Leah, bless and heal you Terri. May the Blessed Holy One be filled with compassion for your health to be restored and your strength to be revived. May God swiftly send you a complete renewal of body and spirit, and let us say, Amen.

  2. Hi Terry I just discovered your comic strip when it was posted on an mpn interferon forum that I belong to. Like you I have an mpn, ET or prePV, depending on who you ask. I want to tell you there is a fantastic support group on FB of other mpn patients. We have a great on line magazine, mpnforum.com, and lots of useful information. Many of us see international specialist and attend conferences to learn more about our disease. Please consider contacting me if you would like to know more. But thank you for bringing attention to our orphan disease. Be well.

  3. Terri – sorry to hear about your ET diagnosis. I was diagnosed with myelofibrosis in 2013. I you are interested in a good worldwide community of people with MPNs, considered Myelofibrosis Private Support Group on Facebook. Pray you will do well with your treatment.

      • I shouldn’t try to write comments on my phone. What a bunch of typos now that I read it on my computer!

        ET, PV and MF are all serious diseases, but life can be good even while dealing with them. I’m sure you are finding that for yourself.

  4. Love your comic! Sorry to hear about your difficulties; I hope that this is the beginning of the end for your problems, and that you won’t have to resort to stronger medications.

    I started reading your comic about four years ago, and have been an avid follower. One of the first things I do after I wake up, is read your strip. Hope you continue to draw your comics for a good, long while yet!

    Keep up the Fantastic work Ms. Libenson!

  5. Follow your comic strip daily in the Asbury Park Press (Monmouth County NJ edition). I was surprised by one of the daily strips some months ago when you mentioned your diagnosis. Coincidentally, I, too, have thrombocythemia/mylofibrosis/ polycythemia vera andI was diagnosed 8 years ago. Until 9 months ago, my symptoms were relatively benign. It began with drenching night sweats, sweating in general, feeling very warm all the time, difficulty digesting most meals and a bulging stomach. I went for a CAT scan of my upper torso – with results showing that my spleen and enlarged to 28 cm. and my stomach was pushed off to the side due to the enlarged spleen. Over the years, I was being monitored for my platelet count on a 3 month basis by a local hemotolgy/oncology specialist. In 2011, the oncologist sent me to this world renown specialist, Dr. Ronald Hoffman, Mt. Sinai Hospital, NYC. He too, said return when your symptoms are bothersome. I went back to Dr. Hoffman in July – where he and my local doctor prescribed Jakafi an oral chemotherapy drug. It is the only drug approved for mylofibrosis/polycythemia vera. It has been approved by the FDA. I have been on this medicine for three weeks (and will take it for the rest of my life – I am 69 years old) and already my platelet count has come down considerably, night sweats, perspiring almost gone as well as that “itchy’ feeling. My spleen as not reduced as yet – but will do so in time – Please know that I am “in your court.” Feel better.

    • Thanks so much, Leah! I’m so glad the drug seems to be working for you and that you’re feeling better. Good info, too. Thanks for reading!

  6. I’m one of your fellow blood sisters with PV and on HU. How interesting to see our struggle in a comic strip. Keep on plugging!

  7. Reading your comic strip is one of the first things I do every day. And every day there’s something I can directly relate with in my family. Thanks for being so open about your situation. The issues you’re having with meds, side-effects, etc. apply to many people with other conditions as well. It really helps to see your strip every day and know that we aren’t alone, and can have a sense of humor about life. Thank you!

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