Breathing difficulties

[Lucky_Me_]

Hello, I have PV and no history of asthma but I'm currently having a hard time breathing. I read on another pv board that some people experience this in hot weather. Has anyone else experienced this?

[Liverpoollou]

Hi. I've had PV for over 2 years and ET for 11 years prior to that. I am 69 and take hydroxy. I too suffer with breathlessness and after tests on my heart and lungs nothing has been found so far. I am now waiting for a scan on my lungs. I know there can be problems with hydroxy and your lungs. It's very debilitating and my quality of life has decreased considerably. Personally I think it's either the hydroxy or the disease but my specialists don't seem to agree. Hope you have more success than I have finding the cause.

[ringsrud in reply to Liverpoollou]

I too have severe shortness of breath but do not take hydroxy. Sometimes can only say a couple of words. Have been very very hot this summer - had to have fan blowing directly in my face with AC on 69. My power bill has been almost $800 each month this summer. Glad cooler weather is coming.

[katiewalsh]

Hi, I have asthma but hot weather and high humidity make it much worse. And now, since my MPN, it has gotten much worse. But it's being out of breath and exhausted. After being in cool air and resting I return to normal. But, you definitely need to see a pulmonologist or your internist for some Pulmonary Function Tests. There are many different things that could be causing it so please get it evaluated. Take care, let us know how you progress. Katie

[Inca]

Hi Lucky Me,yes the breathing problem is mine too.Hot weather or getting too warm anytime starts it off.I have had scans ,dopplered etc ,all normal.I am P V 7yrs,Hydrea and other Meds,my consultant says it is he disease and the Hydrea.Worry not,keep cool,exercise and drink lots of water.Best Wishes.

[socrates_8]

Hey Lucky_Me...

I am relatively new to our exclusive MPN club. I am Post ET/MF (prefibrotic).

I noticed that my shortness of breathe commenced almost immediately after being diagnosed. That was in May 2016. Since that time, I first commenced on Hydroxyurea (HU), and then progressed to Interferon injections every two (2) days.

Both of those cytotoxic drugs have blown up my lymphatic system, and water retention has also increased my weight. There are also lumps in places I have never experienced before...

Although I am finding it quite difficult, I am now finally recommencing getting some good exercise. It is a real challenge for me to do so, as I also suffer from extreme fatigue and sleep deprivation. It is at night when I struggle with my breathing the most, and of late, I am waking with dried blood in my nasal passage.

I am hoping that increasing my level of fitness, (generally), will aid me in this problem of shortness of breathe, my sleep deprivation problem, and for my weight control... wish me luck.

Steve

(Sydney)

[sand-bog]

Hi Lucky Me, I too suffer from shortness of breath - PRV on Hydroxy and aspirin - recently saw a thoracic dr who reckoned my problem was my bird (have heard of this before) and suggested I give him away. I reluctantly did this and maybe have noticed a slight improvement. However I go to see him again at the end of the month when more tests will be done so it will be interesting to see if there is any great difference. Good luck to you, Sandra