Breathlessness with ET

[Charliemills]

Hi everyone. Can anyone advise on what they do when short of breath with ET. I was diagnosed over 2 years ago with Jak2+, I have been lucky in that apart from headaches and bone pain I have been symptom free. Appointment last week saw me being sent to A&E because they thought that i had a clot, I tried to explain that i had been breathless many times before, regardless had all the normal tests, X Ray, bloods etc, all came back negative for clots. Obviously I am grateful for everything they did for me, but nobody would listen when I suggested it could be linked to my MPN. My platelets at the moment are 586 so not too bad. I take clopodogrel every day, but nothing else, I am 69. Any suggestions would be gratefully received.

Jan ☺

[ksos]

Hi Jan -- I often have the same symptom of breathlessness. I wish I could say I have a solution to either reducing or eliminating it, but I don't. However, re: the question of getting your medical team to connect the symptom to ET -- on the advice of my hematologist, I'm taking a battery of heart/lung function tests to eliminate other other possible conditions so he can accept that it's related to ET. The tests aren't difficult -- echocardiogram, chest x-ray, lung function, heart stress -- just a bit time consuming. Maybe you could ask your doctor to do something along the same lines. Either way, you have my sympathy.

Best,

Kim

[yarrowleaf]

Good morning, Jan !! Same here, the breathlessness. I have Pegasys every 17th day (age 65), but it seem to me that the breathlessness is worst the first 2-3 days after the injection. I try to bicycle as much and hard as possible, but from April and until late September I can't be outside my dwellings, because of photosensibility (between 7 morning and 8-9 evening).

Still-- I "believe" I can work the breathlessness away by force. I can't swear, cause most of us seem to cling to any branch we get our hands on -lol

I don't know about your condition and life style, but I suggest some sort of fitness training or just plain bicycling (or swimming or riding (riding is perfect-- you can tell the horse about your trouble while he sees to your condition and sore bum ))

Have a nice day - Yarrowleaf

[Wyebird in reply to yarrowleaf]

Yep I also can be breathless but go for a swim and my lungs regulate themselves

[Bridie123]

Hi Jan, I have ET and have had a battery of heart tests which came back ok. Still get breathless 3yrs down the line 🙄

[wormwood]

I was the same and it was very high blood pressure, I now take medication, its helped but still not 100%

[Wyebird]

I complained bitterly about it and even collapsed a few times. (Ambulance being called).

Eventually I had a lung function test. Result- hypoventilation syndrome. After physio ( taught me how to breathe correctly) there was a huge improvement.

I still get breathless if i try to work at my pre ET speed. Or indeed for no reason. I take my self off to my bedroom and concentrate on my breathing for about 30 mins. Bit difficult to do at a party!! There again asthmatics have to cope.

[Turfbeg]

Hi everyone, Is was diagnosed with ET and PRV almost 3 years ago and find I get a "short of oxygen" feeling that could be thought of as breathlessness even when relaxing. When this happens I cannot inhale deeply and usually find that breathing in as best I can and holding the breath for a few seconds helps. This does make my problem sound like hyperventilation but I am sure that if this is the case then it's either due to the ET or PRV or the medication I am taking ( hydroxycarbamide and aspirin).

[Cja1956]

Hi, Jan. Breathlessness has always been a problem for me. Sometimes I felt like I was going to pass out. At the time, I didn’t realize it was from the ET. I went to the cardiologist and had all kinds of tests done and they were normal. I agree with some of the others here. I started yoga a few months ago and it seems to help. Walking and swimming also help. Also maybe you should discuss this with your hematologist. Hope you feel better soon.

[Mwalimu]

Like KSOS, I am currently undergoing tests to try to establish the cause of - not exactly breathlessness - rather a 'tight' chest. My haem insists it is nothing to do with my ET. I have had a constant history of being unable to get rid of colds since 1997 (when I returned to UK although ET was diagnosed only in 2011), and chest x-rays from time to time have found nothing.

At the moment I am keeping a diary of my peak air flow measured twice a day. This, after one month, has established I have a reduced air flow which does not seem to respond to an inhaler. I have yet to hear my GP's explanation as to what she feels is causing this but am fairly sure it will not involve accepting ET may have something to do with it!

Nevertheless, it does seem to me - given that some of us experience the same problem - it may do. Can anyone suggest some mechanism which may account for a connection between ET and breathlessness? Sallie

[Fi82 in reply to Mwalimu]

My hematologist said I’m anemic, which reduces oxygen-carrying capacity. I’m taking iron tabs now. Also high platelet counts can reduce how many red blood cells you have, and Hydrea can reduce red cells, too, as I understand it. So I believe breathlessness can be associated with ET. I’m trying to do more exercise. I try to breathe mindfully when I’m feeling short of breath. Hope this helps.😁

[Stephen399b]

I have ET Jak2+ and do get breathless. I am on HU and asprin which have lowered platelets but also HGB and wonder if lack of oxygen due to anaemia?

Stephen

[woodyfingers]

My chest had been wheezing for years. I bought an air purifier/ionizer an put it in my bedroom. My wife stopped using talc in the bedroom too. Although I was sceptical, the difference is amazing. Worth a try. I'm PV and JAK2+. Good luck.

[clubdino]

I'm wondering if some of you have pulmonary hypertension. There is a connection between MPNs and PAH. Shortness of breath and chest pressure are two of the symptoms.

[Fi82]

I, too, am breathless quite often w any exertion, especially going upstairs. That didn’t use to bother me. Sometimes I get a bit breathless just sitting in a chair. I’m no doctor, and this may be simplistic, but my red cell count, my Hg/Hct, have lowered. And I’m anemic. These changes arrived w ET. So it stands to reason that if I have fewer red blood cells, and less iron, my oxygen-carrying capacity is compromised. I do think moderate exercise is good, like walking. I don’t know if it helps or changes anything, and I do get a little breathless, but I feel better. Sorry, not much help except to commiserate.😊

[Pisky3]

I can't walk across a room without feeling breathless. Visits with a pulmonologist, a cardiologist and an ENT were fruitless. Was just diagnosed with an MPN, (PV), so I'm assuming that's the problem. Have a follow-up appointment with the hemotologist next week, where I hope to get some help.

[Cja1956]

i’ve had breathlessness for the last 15 years since I got diagnosed with ET. I now have myelofibrosis and it’s gotten much worse. I did have some lung function tests, and I found out I have sleep apnea and COPD although I’ve never smoked. I just had a consultation about an SCT at Dana-Farber in Boston and the doctor said that myelofibrosis can cause your lungs to look like you have COPD. I thought that was interesting. Now when I feel like I can’t catch my breath, I just say to myself this too shall pass.