ET - Pregnancy

[Anniepops112]

I’m new to forum. Diagnosed in 2017 with ET, JAK2+. Baby aspirin. Recently had my check 6 month review and all ok. My platelets are stable at ~850.

We’re trying for another baby, which is a rollercoaster in itself. I don’t know anyone’s pregnancy that was quite so complicated as mine. Seems quite daunting to hopefully do it again.

I was eventually put on interferon but only by chance as the MPN specialist was covering the obstetric clinic. The obgyn were horrified at my Doppler scans and never seen anything like it. Pregnancy went more smoothly from that point, although the interferon made me feel awful.

Does anyone else find it so hit or miss what haematologist is running the clinic on the day? They never seem to be MPN specialists, I appreciate small field. I was so ill when I was pregnant, I had severe morning sickness which wasn’t a good combo with the interferon. With a toddler as well, it’s going to be tough fighting my corner whilst they keep saying “high risk pregnancy”. although I am much better informed now.

Feel very lucky to have my little one as have experienced multiple losses. I know that could be one of many reasons not just ET. Keeping everything🤞

[hunter5582]

There is no question that you need to be followed by a MPN Specialist, especially during a pregnancy. The "any-old" hematologist approach is a very bad idea for any patient, but particularly a MPN patient. There is no way to have a quality outcome in a system that works that way. Additionally, quality care is based on the doctor-patient relationship. Your relationship is not with the office, it is with the doctor that you chose to provide your care.

I would suggest doing whatever it takes to get to one of the MPN centers where you are. it is worth travelling to make this happen. You can always use the local office for labs and such. but you care decisions should always be made with the involvement of a MPN Specialist. This precisely what I do. This arrangement works well.

All the best.