Hi all. Hope you are as well as you can be. I wondered if anyone else experiences Breathlessness? Husband is on ‘active monitoring’. He has days he’s mostly ok - we can go for a walk, normal difficulty breathing corresponding to how fast or uphill we walk. The next day he’s fatigued and really breathless. After a recovery day, he’s been ok again. We went for a longer walk on Tuesday - on 4th recovery day today and still breathless just walking round the house. It’s better when he sits still. Peak flow normal and oxygen saturation normal. I know I can’t ask for medical advise, but from your experience, is there anything we should be asking for to get checked ?
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Hello @SunFlower I am sorry to hear of your husband’s breathlessness. I know how distressing it can be. I don’t know which type of blood cancer he is dealing with but I have myelofibrosis and I have found that when my haemoglobin level has dropped that I can experience breathlessness. Therefore it might be worth asking for a full blood count which will give his Hb (haemoglobin) level. I hope this helps and I wish you both well. Willow x
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Hello there @SunFlower, I’m sorry to read of how breathless your husband can feel. I’ve experienced this too with the Polycythaemia vera ('PV') I live with and it’s not pleasant! Often for me it’ll be after a day of activity as well, and sometimes anxiety can make me feel out of breath. Sitting still and taking deep breaths can help slow things down a bit when anxious.
I see dear @Willow (hello Willow, love your new picture!) has shared about experiencing breathlessness when affected by low haemoglobin levels and I’ve heard similar from my haematologist too.
My specialist tells me to always let him know about any changes in symptoms or new ones popping up, so I’d say do tell your husband’s specialist. Like Willow says they’ll likely want to check his blood cell numbers via a simple blood test.
Might it be worth checking for any viruses that could be affecting his breathing? Or anxiety? Just a couple of ideas to pass by him and his specialists.
Perhaps give the Blood Cancer UK nurses a call as they can help talk through the medical side of this with you both. Their free number is 0808 2080 888 and they’re back on Monday morning.
Not to cause any alarm but, in the interest of your husband’s safety, if the breathlessness becomes worse then please don’t hesitate to seek medical help before Monday.
Do please let us know how you both get on @SunFlower.
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Hi @SunFlower,
Willow and Duncan have given you useful advice. I just wanted to echo that, given it’s been a few days since that longer walk and he’s still breathless just moving around the house, I’d encourage you to contact his haematology team directly today if you haven’t already. They’ll want to know about a symptom that’s both persisting and changing like this, and they’re the best people to decide what needs checking in the context of his specific situation.
If it would help to talk things through before you speak to his team, you’re also welcome to drop our Support Services (staffed by blood cancer nurses) an email at support@bloodcancer.org.uk alongside the (free) number Duncan already mentioned, 0808 2080 888 (option 1).
Take care,
Ceri - Blood Cancer UK Support Services
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