Hi All, New here feeling a bit run down and fed up. I have not yet been diagnosed but have been with my hemotolgist for a couple of months after getting high haemoglobin and hemocrit readings from a pre op… they started me on 3 weekly veinsections and asprin straight away. My spleen scans came back as normal my JAK 2 came back negative. But my EPO levels came back below 1 .. there now testing for other mutations like the JAK exon 12 and others .. waiting for a bone marrow biopsy next week and then appointments with the respitority clinic at the end of the month. Feeling very up and down atm and wondering if anyone else is having or had a journey like this .. ive just turned 42 and feeling exhausted xx
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Hello there @Lou3001, welcome to the forum. Sounds like you’ve been going through testing and treatment like venesections as well as awaiting results, which can all be so stressful and tiring.
I’m glad you found the forum, it’s been really helpful for me since I went through similar tests to the ones you mentioned. Since 2023 I’ve had regular blood tests and venesections while already taking aspirin, so can likely imagine what you might be experiencing. It really can feel exhausting having blood removed regularly. I find going into hospital can itself be tiring.
From my non-medical perspective, I’d say try to give yourself a break and not feel like there’s anything you could have done to have changed this. You’re looking after yourself by getting tested and following treatment. Whatever the gene mutation testing finds, or doesn’t, you’re seeking answers to health concerns which is great.
It might be that the exhaustion is linked to any undiagnosed conditions you’re being tested for, in which case I’d say try to bear with it. Once the bone marrow biopsy (BMB) is done your specialists should have all the information they need for treating you. But for now it’s a lot of waiting, which I personally find really difficult. Have you got any hobbies or pastimes that might distract you for now @Lou3001? I got back into favourite old films and TV and did lots of furious hiking!
Anyway, the forum is here for you during the testing and beyond. Maybe have a look around the forum to get some tips about that upcoming BMB. Do you have a loved one to talk with about all this, maybe to attend appointments with you to help take notes? Do please let us know how it goes.
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Thanks so much Duncan for replying.. im struggling with this im a single self employed mum to a 17 year old .. ive not told her the possible diagnosis yet although she knows im having veinsections and tests etc the bmb is scaring me im really freaked out by all of this . So I trurely appreciate your reply x
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You’re welcome @Lou3001, I was thinking more about your predicament, about whether to share more with your daughter, and you know her best of course.
Do you think she might understand any recent change in moods or worries better if she had this extra information about the testing and treatment you’re undergoing? She’s considered a young adult at 17 and this could be a great role-modelling experienced for her, seeing and hearing her mum being vulnerable but also treating her like an adult with this information.
Maybe she could accompany you to the BMB and help you home afterwards? I don’t think we can have loved ones inside the room when we have a BMB, but could she be waiting for you after? My other half waited for me which was really comforting. At the very least it’s helpful to have someone to help guide us home after having anaesthetic, which I highly recommend you ask for with the BMB.
I’d say there’s no right or wrong way to share this sort of news, but hopefully it’ll come up naturally and help explain stuff that your daughter has likely already picked up. She might have already googled it all!
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Hi @Lou3001
It’s very difficult having to share news with those closest to you.
I know when I was first diagnosed shared the news with very few people.
The Bone Marrow Biopsy is talked about a lot. It’s definitely not something you would choose to have.
Equally it’s the only way the Haematologists can get real insight into your condition and work out a treatment plan.
I agree with @Duncan that it might be beneficial to have your daughter with you if at all possible or even a friend when you have your BMB.
Hope that helps.
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Hi @lou3001 , I’m in the same situation as you. I’ve had blood transfusions more than six times, every six weeks. The results for the JAK2, MPL, and CARL mutations were negative. I still need to have the JAK2 Exson 12 mutation test and a bone marrow biopsy done, and the waiting is worrying.
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