Short of breath & fatigue ?

[katiewalsh]

Does anyone with ET & on Hydrea get short of breath and fatigued on hot humid days? My MPN doc says not from my MPN since I'm not anemic. But my other docs can't find any cause. Even walking 150 feet in hot humid weather can cause it. I appreciate any help you can give. Thanks. Katie

[Inca]

Hi Katie , I am P V ,on Hydrea,Yes I get breathless!! Not just humid days,tho those make me worse. I carry on walking dogs,working at my sculptures,a little bit with my horses now,that is just a step too far.Sometimes the puffing goes. Sometimes it does not and I give in and rest. My consultant andG P both are sure it is the Hydrea and the P V,along with fatigue etc. Think there are many of us who get breathless part and parcel of our blood maladie. I do find most of the time the exercise does help,not in heat or humidity of course.This summer heat and humidity here in SW Fr,really was bad for me,had to stay indoors and cool as possible.Good Luck with it Katie,you are not alone...an asthma inhaler does not help at all for me ,so it has to be blood related hasn't it.Have had lung scans ,doppler scan,MR I ,all is well with breathing apparatus,so there we are!!!Best Wishes,Sally

[katiewalsh in reply to Inca]

Thanks so much for replying Inca. Where do you live? We're in SW Florida (Sarasota) also. But fortunately we spend summers in Wisconsin. I worry about the time when we have to be here year round. Two things I've done this past year that might help you. I carry a battery operated fan with built in water mister. I put ice in with the water & keep it in a small soft sided cooler bag. You can operate one or both features at a time. Got mine at Bed Bath & Beyond in Wisconsin. It helps a lot. Then I invested in an after market auto start for my car. When I park I put air & fan speed to highest levels. Then turn it on & let it run while I'm inside air conditioned building. On extremely hot days I park in handicap spot if absolutely necessary. I learned the fan trick from Kinsale Lady (sp?) on this forum. She lives on SE Coast of Florida.

What do you sculpt ? Before my asthma got bad I sculpted organic abstract items in clay which I enjoyed so very much.

Be well. Katie

[Inca in reply to katiewalsh]

Hello Katy,I meant to reply earlier,but have been unwell following surgery.I will post the reason for the latter soon,as I think it is relevant to Hydrea. But for now ,if you really love doing your ferns ,I find that when I am concentrating on my sculpture I forget feeling tired and achy,perhaps if you start again your mind will be settled and you will feel better.I work professionally,my sculptures are in U S A too.Animals mostly,horses ,deer. dogs,hares etc.I paint also,tho the sculpture has taken over lately.If you put sallyrutherford.com I will come up,not up to date I must say....! Your ferns sound interesting,do you sell,or just for pleasure.We need to keep occupied with doing things we like to feel better.My excellent G P and consultant say it is important for me to keep working.I just did a good solo exhibition,sold well and kept going for over two weeks....!was exhausted afterwards but felt on a high !Supposed to do two in U K next month,depends how sugery is healing.Give it a try,your sculpture,I am sure it will help.Best of wishes over the miles,e hugs etc for strength to cope .Sally

[Inca in reply to Inca]

Forgot the www .before name! Chemo brain !!!!

[Borage]

I too get breathless and get angina even though scans have found nothing wrong with my heart and the blood vessels are clear.

It is worse if I am even slightly dehydrated, so hot weather is difficult, and the episodes of face and neck sweating make that worse.

With the breathlessness I feel very shaky and then my limbs feel heavy, I get clumsy tired, and need to rest.

If I have overdone things I feel tired still and lethargic the next day.

Isn't this ET stuff fun?

[Hidden]

i would advise you to get all the usual checks. I was abroad for some weeks in 35-38c and blamed the heat for increasing breathlessness and fatigue. iBeing used to fatique as I have PV Jak2 I put it down to that and my Hydroxycarbamide. I put up with it too long and nothing showed up as amiss with the stethoscope. However when my oxygen level was checked it was far below normal. To cut a long story short I had clots in both lungs from unsymptomatic embolisms in my leg. I was rushed to hospital and now have to take anticoagulants and am being closely monitored. I was in hospital for nearly two weeks.

I am not relating this to scare you as I am very shocked still about what happened and that the extensive bockages in my lungs did not show up with the stethoscope but it was a lesson to me not to ignore warnings and I realise now breathlessness should never be ignored. The simple little finger oxygen monitor was what raised the alarm and I am thankful that I got to hospital just in time. Subsequent leg scans have shown a large clot in my leg as well as old clots which I have been completely unaware of. I have got so used to leg pain and fatigue etc., that I have been "just getting on with life".

Hopefully you will be reassured by some simple medical checks but make sure you get those checks. Not only will they put your mind at rest but may prevent something more serious going unnoticed.

Kind regards.

[Diam]

Hi Katiewalsh. I get very short of breath and fatigued every day but in hot humid weather it is definitely worse. I just take it easy on these days. I also have asthma and copd as well so that can make it worse for me. Check out that you don't have asthma as I developed my asthma when I was in my 40's.

Marigold

[Mardigras]

Hi Katie,

Yes, absolutely.

The doctors haven't said that it has anything to do with the Hydrea, but I have an appointment with a cardiologist in November. I live part of the year near my daughter and grandchildren in Gran Canaria and the rest in the UK.

I'm hoping that there is nothing wrong with my heart, but the pains in my legs, fatigue and a feeling that someone is pressing on my chest could possibly by attributed to the Hydrea.

The humidity in Gran Canaria certainly makes it a bit worse.

I'll let you know what the outcome is.

Best of luck to you,

Hugs

Marca

[Inca]

Marca,Ihad to have recently a Doppler scan,cardiologist saw my ankle and leg were swollen,I had gone for cardio check as I had a stent fitted when P v was diagnosed.

He was sure I had a clot was swiftly to specialist in veins etc,evidently it is not quite the same as cardiology.......we learn a lot with MP N as a teacher ! All thank goodness was negative,just a tendon sprain I had been putting ice on for weeks! Had no idea it could have been any thing serious.The heat and humidity really was dreadful this summer,even for the young and healthy here,We are Aquitaine ,S W ,between Bordeaux and Toulouse. Like you return to U K ,but less and less,my care here is excellent.The bad breathing problem is a pain,my G P prescribed a mild tranquiliser,which relaxes muscles,hey presto ,the puff improves.Getting exercise just right is hard I find ,having been very active before P V,the sudden fatigue with it all is difficult to manage.Very Best to you,hope you find some relief.Sally

[Stevef10]

Hi

It doesn't matter if it's hot or cold!!! He he but here in UK it's normally cool to cold

[katiewalsh]

Thanks to all for responding. I do have asthma & have had this & all other systems checked and told they're ok. I agree Marca completely that we should make sure all is ok. Fortunately Sally got things fixed in a timely matter. But it's very easy to just assume everything is just related to our MPN. Do let us know what happens in November. Katie