I wondered if anyone can help. I’m Essential Thrombocythaemia ('ET') CALR type 2. Platelets 630. Diagnosed very recently. I also have ME.
The last week I have experienced a tight feeling chest and like I can’t get a deep breathe comfortably. I went to the GP today and my SATS, HR and chest are all fine. It could be anxiety but it’s making no sense as it’s the majority of the time. I’ve suffered from anxiety previously but never had breathing or a feeling like this so am not convinced it it.
Any suggestions on what on earth I should do? I’m not asthmatic but wondering if it could be a sensitivity to aspirin? Has anyone experienced this before?
Welcome to the forum and thank you for taking the time to send in your question
My heart goes out to you, as clearly things seem quite confusing at the moment and getting to the bottom of things is the goal
You mention a few things, and I’m afraid I cannot relate to them, nor am I in a position to give any medical advice. My thoughts are to get back in touch with your medical experts and ask for more advice and guidance.
If you feel you would like to you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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Hello again @JessJ, I’m really sorry to read of that breathlessness and the tight chest sensation you’re dealing with, they do not sound at all fun! I know them well, like you say sometimes from anxiety, but also in relation to side effects of Myeloproliferative neoplasms ('MPN'), living with Polycythaemia vera ('PV') as I do.
I see dear Mike @GenesisDevice has given great advice and I would add that your haematologist really needs to know how you’re feeling. Mine tells me that when my blood is thicker from increased blood cell numbers like platelets it means there’s less room for oxygen, which may explain those sensations you’re experiencing. It can even cause sleep apnoea, not having enough oxygen in our blood. I say this from my non-medical perspective, but have been reassured by my haematologist of what I’ve shared with you here.
If you’re tending to the anxiety side of things with breathing exercises and other techniques that you know help you then I’d say give your specialist or CNS (clinical nurse specialist) a call or email and ask what they suggest. If you’d like me to share some simple exercises to help slow down your breathing and anxiety please don’t hesitate to say.
Like Mike says do consider giving the lovely Blood Cancer UK nurses a call on 0808 2080 888, they can advise more on the medical side of these very understandable worries and point you towards other resources, should you need any.
Please keep up this great self-care @JessJ. Will you let us know what your haematologist says? If it’s any comfort, once my blood cell numbers settled down into their normal ranges with treatment I noticed my breathing improved. It does really feel like anxiety though, and can cause anxiety! I haven’t heard of sensitivity to aspirin but perhaps check this too.
Thank you for your post. We are so sorry to hear that you have been diagnosed with Essential Thrombocythaemia ('ET') and that you are experiencing a tightness in your chest. We can imagine this is a worrying time for you.
I can see that others have commented with helpful replies and it is reassuring that you were reviewed by your GP and that you take aspirin. However, as your platelet count is 630 and you are having difficulty taking a deep breath, this may require further investigation. Having Essential Thrombocythaemia ('ET') can increase risk of blood clots, so it may be necessary to have further tests completed so that this can be ruled out.
We would recommend calling 111, out of hours, of if you have a contact for the haematology team or haematology triage line to give them a call as soon as you can. If your symptoms worsen, are persistent or you develop new symptoms, we would advise attending your local A&E.