Want to understand ET: I was diagnosed with ET in... - MPN Voice

MPN Voice

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Want to understand ET


I was diagnosed with ET in September last year. After being ignored for over 7 years from my medical care. I have never really thought or looked into it, as at the time I was ill with another illness & told not to.

Now I have that sorted I have been looking into ET. I dont understand alot of it, I am looking forward to attending a patients forums in Manchester.

Its also changed my life the company I work for has made me change units as I worked in a challenge unit. This upset me as I get treated different which I hate.

My blood platelets have gone down a lot since I started the gym & yoga once a week.

Me and my boyfriend havent talking or wanted children but since looking into this condition its made us want a child. Due to being told we have to tell everyone it has to be planned and its up to the professional if we can have one or not. This makes me annoyed.

Has anyone else been told this? Or feels the same?

11 Replies

I wouldn’t tell you to ignore their advice, and if your OB/GYN is who you’d like to see you through your pregnancy, it would be good to consult with them as well. I was moved to a high-risk OB because of my PV, to someone with experience working with patients with our kind of needs.

In the six months before I got pregnant, I felt itchy when I went to bed. Not every night, and not always with comparable conditions. I thought I was allergic to the cat or a topical muscle cream; I tried new sheets and washing everything more often and in an allergen-free detergent. Nothing fixed it. Then, last July, it stopped. And then I found out I was pregnant and had PV. Hell of a surprising month, you know? LOL

But the itching stopped because, with the pregnancy, my body was producing loads of hemoglobin, which lowered the percent of my blood comprised of cells. No pruritis for that whole time. My numbers were super low - low 400s for platelets and 32% HCT. It was glorious. Now I’m up (back? we don’t have a benchmark from before) to low-to-mid 500s and 50%. Sigh.

The munchkin was fine, as far as blood counts are concerned. I would mention, as was posted a few days back, there has been a recent study linking MPNs as a familial thing and not just spontaneously occurring. So I guess a word of caution there. And many insurance providers (at least here in the States; not sure where you’re at) also cover genetic testing for major inherited diseases for you and your partner before or at the beginning of pregnancy so you can determine if this is the best decision for you. But honestly, from my PV’s POV, being pregnant was awesome. I’m not loving being itchy again. XD I was on baby aspirin once a day with him, and it didn’t affect either of us negatively. Don’t know what meds you’re taking; some of our stuff can’t be had while pregnant. So that’s also a consideration.

Best of luck, whatever you decide.

Avamia94 in reply to lynxfluff

Oh ye thats a surprise. Im on clopidogrel turns out I'm allergic to aspirin. (From the uk) That would be a plus side no more itching. The last couple of weeks im more itchy than ever. Could the baby get ET from the mother or is it not hereditary

Congratulations on your baby happy he is health. :)

Hi. As you’ll see from posts on this Forum plenty of people with MPNs have conceived and carried babies. I don’t know where you are based but Guys in London runs a regular ante natal clinic for women with MPNs.

I doubt any health professional would dictate to you whether or not you can try and conceive a child. However I imagine they might well want to have a conversation with you about the risks and issues involved as you have a chronic health condition. And you may want to heed that advice. Certainly there are certain medications - like hydroxycarbamide - that you can’t take (whether you are male or female) if you are trying to conceive. Obviously the advice you will get will depend on your individual health profile and the severity of your disease.

There will be many couples in your position who for one reason or another have some sort of health condition that will impact on any pregnancy. I understand that it may feel a bit intrusive but the concern will be to ensure that you - and your baby - remain well. And generally, pregnancy from start to finish can be quite involved and feel intrusive even without a prior health condition! Do check out websites like MPN Voice. There is lots of good advice there. Good luck.

Avamia94 in reply to Ebot

Heyy im based in blackburn hospital, but go to Guys in London once a year. We haven't got much no one knows about it this is why I dont understand much about ET.

I had a not very nice doctor I think she said I would just have miscarriage after miscarriage. I have to tell everyone if we wanted to have a baby.

Thank you for you response & advice

Hi. Can’t comment on the Baby aspect, but in terms of your employer changing your location/terms, if this was done because you have an MPN, then you might have a case for discrimination...cancer is a disability and you can’t be discriminated against due to disability. I’m not a law expert, but I am an employer. They have a duty to help you adapt if you need it, but you have to raise it, not them, as far as I’m aware. Hope this helps.

Avamia94 in reply to GolferCL

Thank you I will look into that i didn't know


Hi Avamia, I hope that coming to the forum in Manchester will help you and your partner, it will give you the opportunity to speak with other people who have been through a similar situation. I would also suggest that it might help you to have a buddy, a buddy is someone who has the same MPN as you, and takes the same medication, and I do have some lovely buddies registered with us who have been through pregnancies with a MPN, so if you feel it would help you to speak with someone else then please email me at buddies@mpnvoice.org.uk and I can send you the information. Best wishes, Maz

JackLina in reply to Mazcd

Hi Mazcd. I'm taking this opportunity to email you to ask your opinion on my dosage, following yet another unsatisfactory visit to my haeme. He now tells me my platelets are down below 300. Can't remember whether it was 210 or 220 and told me to continue with 45mcg weekly. I asked him if I should be reducing this. He told me I was already on the lowest dose. He then said, 'What do you want to do?' Maybe you could do them every 10 days instead or every fortnight. Surely it's up to him to advise me. Thank you for being there on this wonderful website. I get more from this than any visit to him or the GP. ATB

MazcdAdministrator in reply to JackLina

Hi Penelope, I can't advise you on the dosage I'm afraid. Do you have the contact details for the specialist nurse in the department, you could phone her/him and ask for some advice, or contact the haematologist and ask him for some more advice on the dose and what the effects will be in how many days apart you take them. Maz

JackLina in reply to Mazcd

Thank you Maz but I did ask these questions on my appointment on Wednesday and he passed it back to me. Asked me what I wanted to do. I really am convinced he knows very little. when I told him the change in my daily symptoms and asked whether or not they could be due to me already having lowered my platelets and not needing the 45mcg dose or were they merely symptoms of my disease, he told me to see my gp. From his reference to the fact, he clearly objected to my having visited Dr Butt early on in my diagnosis. I will contact my nurse. Thank you again.

I was hoping it will help my partner is looking forward to it more then me. Yes that would be nice I will email you thank you

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