Sit tight and try not to die

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorder

Feature image from LARTIGUE

I have not written much here at the moment because there hasn’t been much to write.

I have been getting regular blood tests and the results have been coming back ‘not too bad’ but ‘not too great either’. I’m in limbo at the moment and I keep thinking is, sit tight Meg and try not to die, something will change soon. There doesn’t seem to be anything else I can do.

Does anyone else feel like this?

I’m in limbo, waiting for something to happen, waiting for something to change. If I got better I wouldn’t need to worry anymore. If I was worse there would be things I could do. But I am somewhere in the middle … waiting.

After 10 years, I  know more about ITP than most of the doctors I see. I know enough to know that visits to haematologists can sometimes feel like a waste of time, especially with an inbetween platelet count of not much at all. There is very little that can be done.

So for now, I will sit tight and try not to die.

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

4 thoughts on “Sit tight and try not to die

    Marloes says:

    Hi Meg, I started following your blog a few months ago when I was researching experiences on getting and being pregnant with ITP. A subject that is very difficult to find information on, so I was glad to read your story and find out that even though not easy – it’s possible. It helped calm my nerves a little, I hope my partner and I will be blessed with a child.
    When I read your blog about forgetting your medication, I completely understood. In busy or times you feel good, I too sometimes forget (or ignore) that I’m sick and need medication. I’ve been diagnosed with ITP for 6 years now and sometimes I get really tired of the hospital visits, especially because there is almost never something new to talk about. My platelet count usually fluctuates between 50 and 120. It hasn’t been bad for over a year now. I take eltrombopag (Revolade) daily. I can’t go without, after forgetting to take it for a week, my platelet count plummeted. It’s a shame I won’t ever be able to go without medication, but this medication has barely any side affects and keeps my platelets pretty stable. I can live my life with very little limitations.
    We all keep going through the motions of blood tests, doctors appointments and pharmacy visits. With no great changes it feels pointless, but it also means you’re stable and don’t have to worry.

    Keep the classic Dory song in your mind: “Just keep swimming, swimming, swimming..”

    Kind regards,
    Amersfoort, the Netherlands

    Gowrav says:

    My mom is suffering from ITP (viral triggered), started slowly but was not diagnosed by many doctors until it was by a dermatologist..,
    she had made good recovery on 1 month of prednisone (predmet 16mg).,
    they taperred it of over a period of 1 month to 40mg(7days), 32mg(7days), 24mg(4days),16mg(15days),8mg(7days)
    and in her last appointment it was stopped completely…,
    One thing we didn’t notice was she had stopped her BP medication during this interval..
    she was happy and all for a day and by second day night started having severe headache, fatigue and nausea..,
    so doctor has again put her on prednisone 16mg for 1 month., she has been advised to take BP tablets as necessary and PAN-D every day before breakfast..

    Was this headache result of prednisone withdrawal or due to ITP., ??
    Can / should she take calcium supplements and / or any other supplements with this ?

    She does field duty (lot’s of walking and travelling) being a sr. health vistor in the public sector., she was on rest for the duration.., should she rest some more…? can the work increase the severity of ITP?

    Fr Ioannis Fortomas says:

    Hi! Unfortunately my mom is also suffering from this. We had no idea what these bruise like marks were on her legs back in July, but, in mid August, my wife and I began worried when she wouldn’t stop throwing up. Unfortunately where we live (a rural village in Greece) there is no hospital, but, long story short… running from one rural clinic to another and finally ending up at a hospital in Athens, my mom has a stroke due to her platlets being something like 7k. It was a nightmarish experience, as she had the stroke in my arms right when we got in emerg. The hospital staff expected her to die within a few days, but… that’s a miracle for you, because she’s still alive and well. She exited the hospital month, spent another couple months at relatives’ in Athens, and, as of today, has 50 k platelets. I think the whole trying not to die bit resonates with her, because just today when I told her that she should begin taking this new pill to raise platelet counts (the doctor said to begin if they hit 50), she said well, not before sleep because what if it gives me thrombosis (that’s a side effect.. btw I think the drug is called revolade). Yes. It’s a disease where you’re constantly trying not to die.

    I wish you and everyone else suffering with this God speed, and good health.

    Fr. Ioannis

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