I watched the Forum. Very interesting, but I have most symptoms well under control, including fatigue, my quality of life is excellent. But no-one mentions breathlessness, it is my overriding symptom now, worse in hot, humid weather. I walk up hills, walk an hour every day, but the slightest incline and I am panting, just have to go slow. I am not overweight, do not have asthma, have a clear chest. I always assumed it was low oxygen saturation in the blood. I have no iron reserves and follow a low iron diet, take Hydroxyurea and have phlebotomy approx. every six months now I have a haematocrit controlled to below 45%. I live for the day: Andrew Schorr's throwaway comment about 'waiting for the next stage' struck a chord with me, carefully watching the bloods for conversion to myelofibrosis and keeping my fingers crossed, but I am lucky: 73, PV diagnosed five-and-a-half years ago, and keeping well.
Breathlessness: do I just accept it or is there anything I should do?
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lucieboo
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Hi Lucieboo, I experienced breathlessness for a while as well, and in my case it was related to low hemoglobin (I was a bit anaemic when they over-venesected me) but that balanced out again after a while. What are your RBC and Hgb levels? Have you mentioned the breathlessness to your consultant?
Yes, I guess I am mildly anaemic, also have small ie immature red blood corpuscles, but I need to keep the haematocrit below 45% as I have risk factors: I have a stent from a cardiovascular incident five years ago. As JR posted in his reply I think the best thing is to tolerate it and work through it as best I can, just so interesting that it is not listed in the symptom checker. Thanks for your reply.
Hi Lucieboo - sounds like you're controlling your PV very well. Breathlessness is one of my more troublesome symptoms but you're right that you don't hear it mentioned very much with MPNs. In my case - MF - I put it down to the fact majority of my cells made in spleen/liver and are 'immature' so don't have the same oxygen because Im constantly catching my breath even with slight exertion and the impact of my very enlarged spleen pressing inside. .
I don't think there's any solution to be honest coz like you Im not carrying excess weight and am reasonably fit trying to push myself to keep mobile. So just keep doing what you're doing unless any of our friends knows different.
Excellent! Thanks. I just think it is very surprising that it was not on that long list of symptoms, which included bone pain, fairly rare. This was my assumption too. I have ever-decreasing (gradually) RBC size and these immature cells can't carry a normal oxygen load. I also notice that I can't push my legs to work harder/faster due to lactic acid build-up, basically for the same reason. I guess I will convert to MF before very long.
Very best of luck. I will do as you say and just persist. I live in a mountainous area so the challenges are ever-present, I have good stamina and just keep going, but as they say here 'doucement' (gently).
Yes I'm familiar with the meaning as I recall the word from my schooldays. . That's a real challenge when your not fully fit. My wife comes from the Scottish Borders and it's very hilly the majority of folks are super fit well into their 80s and older. You sound like you have a very positive and pragmatic outlook and I'm sure you will keep soldiering on. My best wishes your way. JR.
Breathlessness was one of my biggest struggles when I was low in iron, ferritin and extremely low transferrin. I was training to do a half marathon and running 5K or 10K was not an issue. Suddenly I literally couldn't run the length of myself without hyperventilating and my heart racing. I thought it was nerves or a complication of another illness I have. I hope you get some help. Sometimes it's not as sinister as we think but I did pick up on Andrew Schorr's comment about waiting for the next stage. It's hard to explain to people who don't have chronic, progressive illnesses.
I have PV and is controlled by baby Aspirin and venesections as and when. See my Haemo evry 3 to 4 months. I suffer with breathlessness if I do any slightly more than walking on the flat.
I don't carry any weight and walk 2 miles twice a day with my dog on the flat. Over the last 2 years I have been to the doctor and ended up in A&E as I was short of breath having gone up a steep hill. Had blood test and ecg and all OK. Tried me on a treadmill to raise heart rate but got out of breath before my heart rate increased that much. Sent me for a stress echo, but as the waiting time was long I paid for it my self. Raised my heart rate to 180 and put a dye in to look at heart blood vessels and all OK. Asked Haemo if it could be my PV and said she didn't think so. The cardiologist said it could be my asthma, but I've had asthma for 40 years and its managed - even used to play football twice a week. Personally I think it is due to low iron levels as even just sawing wood my muscles start to ache, which is a bit embarrassing when people who are 20 years older than me have to take over. Generally always feel tons better after a venesection. Guess I have to put up with the breathlessness and avoid hills.
I am now convinced it is the PV, not heart nor asthma nor anything else. Low iron plus small and immature RBCs I would put down as the cause, but there may be something else...you say you are better after phlebotomy and I think I am the same. The haematologists should be looking at this, and with the number of replies I have got it is definitely worth including on the list of symptoms related to MPDs.
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