I'm wondering if anyone would be open to sharing about their experience of having an MPN and also having a baby/being a mom. I'm trying to figure out how I feel about the combination of MPN and motherhood, what concerns may not actually be too concerning, and what I should be thinking about. I'm in my 30's, have ET, and generally don't have any symptoms.
One of the main things I wonder/have concerns about is whether pregnancy/motherhood increases chances of progression and/or causes more MPN symptoms. I'm not sure that there is an answer to this...but just thinking about the demands/lack of sleep/etc. that motherhood typically requires, I wonder if it contributes to more inflammation, which may cause more symptoms/progression, etc...
I imagine everyone has a different experience but would love to hear about how you manage the combination and if your MPN experience has gotten worse (or better!)!
Thanks in advance.
Written by
Lucy2022
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I can say the a MPN does not prevent parenthood. I am the Father of 2 children and grandfather to one. I had ET back when I was raising my kids (later progressed to PV). It never caused a problem for me, but i was mostly asymptomatic. On the whole, I would say the main thing about MPNs and parenthood is that it becomes all the more critical to be sure to take care of yourself. You cannot take care of a child if you do not take care of yourself. Diet, exercise and rest are all more important than ever. Having an appropriate treatment plan guided by a MPN Specialist is always important but vital during a pregnancy. Do not rely solely on a regular hematologist and obstetrician . They will not have the KSAs you need, especially during a pregnancy with ET.
Excellent info on MPNs and pregnancyfrom MPN Voice
Hi Lucy, I have ET and had 2 children in my 30s . Both pregnancies were fine. My haematologist was delighted with my platelets which dropped to almost normal during each pregnancy due to increased blood volume. I felt tired bringing up 2 children but hard to compare what that would be like without having ET as it's very normal to feel tired! I was closely monitored throughout each pregnancy by a high risk on gym, due to my ET, but everything was fine for me. Good luck with your journey. Lisa
I have PV and was not diagnosed until my youngest child was around 8 years old. However, looking back I do wonder if I had my condition either whilst I was pregnant or it developed very shortly afterwards. I was 38 went she was born and was surprised how much more tired I felt with my second child despite there being only 16 months between both children. I was anemic after she was born and I had a number of odd medical issues shortly afterwards, which I now recognise as MPN symptoms with odd blood test results so it all adds up to developing PV around this time. Whilst I cannot comment on pregnancy and MPNs I've now had a good few years of being a mum of two with PV. My youngest is now nearly 16 and it has been a fantastic 16 years, which I wouldn't change for the world. Tiring and sometimes stressful - yes. But then all parents would say the same - MPN or not. If motherhood is something that you want, I am sure your doctors will be supportive - I would go for it. Good luck for the future.
I have a toddler and one on the way. I guess there’s no way of knowing what non-ET parenthood looks like. I usually take 75mg aspirin and have no symptoms. I’ve been monitored closely in pregnancy. With my toddler I had to take interferon as my platelets were affecting the blood blow through the placenta. This time I’ve been taking blood thinners since the start and so far it seems to be working 🤞 your platelets will likely drop when you are pregnant as your blood volume increases. Mine have def dropped but not yet “normal”. With the interferon last time they did finally go “normal”.
Pregnancy is really tricky for me, for multiple reason, of which ET is one of them. Until you are pregnant you don’t know how your body will react to it. Pregnancy is an area of medicine that there is limited knowledge as is ET so combine them both, they use the words “high risk” a lot. It’s quite scary. But pregnancy can be complicated for all sorts of reasons. The more younger people who are diagnosed, the more they will learn about the impact of MPNs/pregnancy/being a parent.
Being a mum is tiring. It’s a case of trying to make sure you are looking after yourself properly. But hormones are magical and I’m amazed how well I function on how little sleep. We don’t have a lot of support as we don’t live near family but we manage.
MPN voice has some great pages on pregnancy that would be worth a look.
ET def doesn’t preclude you having a family, it’ll just mean more monitoring, some injecting and likely induction at term. But in a way it’s nice to have a date to work to.
My platelet count pre-pregnancy used to be about 650 and since are 850. Not sure if that’s connected. I am JAK2 positive and although I know MPNs are not hereditary, I have wider family members who have PV so I may get them tested if they ever show symptoms.
Hi , all I can say is it is the best thing ever is being a mum MPN or not ,Yes you will be tired regardless of having a Mpn but when you watch them grow from babies into little people into teenagers and then into adults you will look back and know it was all worth while. I have 3 beautiful children all a lot older now ( 16,18,25) and I know on days when I feel low I think back and smile to myself and thank my lucky stars how incredibly lucky I am and every bit was worth it.
Hi Lucy, I have a 2.5 year old and am about to try for #2. I have ET calr and am on pegasys (max dose) which only recently started working after 2+ years. I would encourage you not to let your mpn stop you from being a mom, if that is what you want. It will be fine. I have no clue if I nap on Sundays because of the mpn or because I have a toddler and am naturally inclined to be less active and always have been. I have taken the attitude of - who cares! It hasn’t affected me that much and if it has I really don’t know how one would figure out what’s due to the normal pregnancy stuff or not. Live your life. It took me a while to get to this place, but I am grateful every day that this is what I ended up with as opposed to a lot of people, young and old, who get much nastier diagnoses every day. Enjoy every minute of your life and don’t let anxiety about this condition stop you from doing a damn thing!
Thank you, Purple! This is really helpful and it sounds like you have a great attitude about things. I agree you shouldn't let an mpn keep you from living your life and am working towards making this my consistent attitude
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