Weather-Related PF Symptoms

[susan-howitt]

It has been raining none stop here for just over a month, not cold yet just chilly at night, I am coughing severely every time I go outside, my breast bone area really hurts when I try to take in a deep breathe.

 

The heat wave we had earlier was also unbearable but between this damp and the heat wave we had mild dryish weather and I could actually breathe better, walked the dogs further, felt great, then this.

[Charlene Marshall]

Hi Susan,

Thanks for writing and sharing your thoughts on this important topic — raining for a month? That must be awful and feel so very damp on your bones! I would have a hard time with that as well. I wonder if the moisture in the air is contributing to your pain and cough, if the temperatures aren’t too cold yet? Sorry to hear the weather is impacting you both hot and cold, that sure seems unfair!

I hope it starts cooperating soon. Thinking of you!
Charlene.

[joe-murray]

Thw heat and humidity of this summer were difficult for me.  I stayed in during the worse hours and days.  Early to mid morning tmand early evening hours were easier on me.  The combination of the two impacted me more than heat alone.   This will be my second winter with IPF so I will see if the cold hits me harder than before.

[susan-howitt]

@jojomojo306

 

Hi Joe

My second winter too since diagnosis  of CPFE ++, been on oxygen since this May, so as you say lets see what happens this winter, I do cover my mouth in the severe cold, have a snood that does help stop the cold air hitting the lungs.

 

Fingers crossed we both come through it no worse off eh?

[Charlene Marshall]

I will keep my fingers crossed that this winter isn’t too bad for you Joe! Thanks for writing and sharing your experience with us. Sometimes I am conflicted when I think about hot or cold weather, and in the moment I think the heat is usually worse but the cold causes pain in my chest with the cough, so then I think that is worse. Truth is, both hot and cold bother me as well.

Hang in there.
Charlene.

[rene-hakkenberg]

Living in the Caribbean island of Bonaire and diagnosed with IPF late 2017 (although undiagnosed 2014 CT scans indicate scarring in the lungs) I definitely find an important negative  impact on my breathing and shortness of breath when the weather is hot and humid.  Or when we are suffering from ‘Sahara Dust’ (no joke), yes, extremely fine dust that finds its way from the Sahara desert to the Caribbean. Because we are a small island surrounded by ocean and blessed by trade winds, we do not have the extreme temperatures differences that many of you have in the US or Canada. However during October to December we have our highest temperatures and no or little wind, and my shortness is much worse. I try to stay in air conditioning as much as possible.

[Charlene Marshall]

Hi Rene,

So nice to hear from you, thanks for writing – though I am sad to hear that shortness of breath you were experiencing hasn’t resolved at all yet. You’re in a unique position being in the middle of the ocean in Bonaire, but yes I can only imagine how irritating the Sahara Dust would be on your breathing! Will it continue throughout October to December if it is high heat/humidity now? I hope not. Thinking of you often.

Charlene.

[laura-bush]

Hi! The cold damp air definitely makes my symptoms worse. I’ve been feeling awful for about 3 weeks, low grade temp, incessant cough, and chest pain. I went to the doctor last week and had a chest x-ray. As I suspected it is pneumonia. He prescribed Levaquin but I  haven’t had any improvement yet so I suspect it may be viral. I am not looking forward to these winter months as I fear that I will be sick the entire season.

Laura

 

[mark-koziol]

Hello Laura, sorry to hear you are not feeling well. I have also been fighting a cold for several weeks. It is no fun and mine is just a cold. Try to keep up on your water intake and  if you have an incentive spirometer please use it. If you don’t have one I would suggest getting one either from your physician or a store. It’s rough doing this exercise but I feel will help you get better and exercise those lungs. Take care, Mark.

[susan-howitt]

Hi Mark

I have just ordered a three ball lung trainer, as we have had none stop rain, one month and counting !!,  I am not getting in the walking I am used to doing, found out my saturations start to go down almost immediately I start walking even on 5lts, so trying to do something about it.  I will let you know if it seems to work but have to wait a while for International postage.

[nan]

Hello everyone, I have been using the extreme cold type breathing as an explanation as to how my lungs feel. Let me explain. I say to my friends and family “you know how it feels when you take a deep breath in the extreme cold? that burning feeling? well that is how I feel with every deep breath i take”. This seems to really help them to understand. Is that how others feel about breathing? My cough is much worse when damp out. I have been having more SOB lately and my PT told me to get a spirometer, the three balls breathing thing. I got it yesterday. Am i supposed to get all three balls up? i can’t, in order to get 2 up i do a lot of cough, 1 is no big deal :).

[susan-howitt]

Hi Nan

 

Yep that is a good explanation of how every breath feels  Been raining almost none stop here for over a month, wettest November on record and it has REALLY affected me, cough every time I change temperatures, I wear a snood when out to try and equalize the warm air going into my lungs.

I have one of those spirometers, can suck in enough to get two balls up but as for holding any of them up, out of the question so far, now if it was blowing out, with my diseases that would be a piece of cake for all three I think and holding them up there.  lol. Have good spirometer tests at the hospital, all blowing out or holding my breathe,  but am on oxygen 24/7.

[Charlene Marshall]

Hi Nan,

So nice to hear from you and thanks for sharing how you describe what IPF feels like to those around you. This is something I regularly struggle with – how do you describe pain and breathlessness?

Using the comparison to taking a deep breath if frigid cold weather is a good idea. The dampness (especially of today where we are) is quite bothersome to me, and I am finding myself exhausted as well. Hope you’re managing ok!

Re: the spirometer. I’m surprised the PT asked you to get this without setting you up with a protocol in terms of how often you should do this excerise, the intensity / settings, etc to maximize its use. Can you connect back with the PT and ask these questions? Doing so will ensure you’re optimizing the spirometer, hopefully not worsening your SOB or cough. Take care and hope these side effects subside.

Charlene.

[nan]

Hi Susan, I have been thinking of you wondering how you are doing, i can’t hold the balls up either.

Charlene, i am a bad patient, she told me to get one and bring it to her, i am not to be using it before meeting with her on Wednesday but i have been “playing with it”. Good call, i will stop and not use it until she reviews it with me. SHe always tells me not to do anything that increases my SOB or cough. She does have me doing belly breathing with pursed lips, sometimes that makes me cough so i try not to be to aggressive, does that make sense? BTW do you know qualifiers for O2 in Ontario?

[Malcolm Mann]

Hi everyone
We have a different problem, eastern Australia is in severe drought, with high temperatures. We are experiencing the worst period of bush fires in my life. There is a massive fire just north of here and we have had continual smoke for the last two weeks, as has most of the east coast.
In Sydney yesterday visability was down to 100metres. What we need most is some of Susans rain.
The smoke really effects my breathing and increases the fatigue level, I drove the 100 miles home from Canberra last week and slept for the rest of the day.
Cheers
Mal

[susan-howitt]

PLEASE Malcolm swap my rain for just a bit of your sunshine, can’t cope with heat nor smoke though so you can keep most of that   lol.  Sounds horrendous, my brother is out there too in the Victoria area so not as bad.

[jaime-l-manriquez]

hello Charleen

I Think I comment before about the weather afecting us, But in my case being a Canadian living abroad, in a quite mild and humid weather , compared with the cold of Calgary, here I feel much better  the season are marked very well, summers go maximun 25c a few days,    and  lots of rain throughout the year. I was diagnosed IPF back at end 2012.

best regards

[jaime-l-manriquez]

Hello Charlene

I think I ve  commented before about this topic, but in my case , I´m a Canadian living abroad

Here the weather is quite mild and damp, in summer time we have around 25 c. for a few days, the rest of the year  goes from  2 to 20c  in fall and winter with lots of rain throughout the year, compared with the cold of Calgary , its much better here, cold was not to good for me..I was diagnosed IPF by the end of 2012, Im 71 years old.

[Charlene Marshall]

Hi Nan,

Thanks for getting back to me and hope you’re now coping okay with the extreme cold and wind we’re getting. What a roller coaster ride of weather, especially compared to Monday when it was so rainy. Rapid changes in weather tends to bother my breathing so I hope you’re managing okay.

Good idea to keep the device and refrain from using it until she can assess your abilities and set you up with the proper instructions on using the spirometer. I know it can be tempting to see what we’re capable of doing but you definitely don’t want to trigger or exacerbate anything 🙂

As for qualifiers in Ontario – my experience was based on a 6MWT and my saturations during that walk test. Once I had a test which dropped my saturations under 88% I was prescribed oxygen, only for nighttime uses at first but since then I’ve become more in need of it. Have you had a 6-minute-walk-test yet?

Char.

[Charlene Marshall]

Hi Mal,

I’m so sorry to hear of the bushfires in Australia – I can only imagine how the air qualify would effect your breathing and fatigue. My heart went out to those in California last year (and this year!) who lost so much from the fires, and I can only imagine how hard all the fires in Australia are for those with lung diseases right now. I’ve been to Sydney and can’t imagine only having a visibility of 100meters – wow! I stood at the top of the harbour bridge and felt like I could see for miles. I hope they are able to get the smoke and fires under control, and please take care of yourself and your lungs during this time.

Do you have a humidifier to try and help purify the air? Take good care and please let us know how you’re doing!
Charlene.

[susan-howitt]

Hi Nan

 

Hi Nan

What I did was do a chart, wrote down every single little thing for three days, ie showering & getting dressed, down to 86% blood oxygen (bought myself a oxymeter first)  going up stairs 80,, feeding dogs 86,  going down the garden to pick up dog poop, 80, getting in shopping from car 78, getting into bed 77  etc etc.  took this chart to doc, they sent me to hospital oops. wasput on oxygen for 16 hours a day, last May, now in December am on oxygen 24/7 BUT on good days, ie  sunny, cool and dry I can walk three kilometres, on the flat, can’t do the slightest hill even with oxygen,  with only three stops to get my sats up. with a back pack oxygen recuperateur (can’t think of the English) 5 ltpm, that is the max for the machine.  Sitting down I don’t really need any oxygen as my sats are 97% !!! don’t understand that at all.   Maybe a chart might help you.

[Malcolm Mann]

Hi Charlene & Susan
Thanks for the kind words, we actually had a little rain, (6mm) which I hope is a start. Susan we’ll take all the rain we can get, the air here is beautiful today, cool and damp, perfect breathing air.

I’m still having difficulty posting responses, just the odd one gets through, usually the short ones. I shall persist.
Cheers
Mal

[nan]

1. Mal, so good to hear the weather is better. I have no idea what that smoke would be like, sounds dreadful. We are cold and damp here. One thing about the cold is I automatically want to walk faster but then I get short of breath, mouth breath, dry out and cough more. I do use a scarf, it helps. Met with my PT and she was not to happy that I tried spirometer on my own oops. Thank you Charlene. She is working with me on it and did a ton of teaching. I have never done a six minute walk test. I have only had oximeter on while sitting quietly and then it is in the high 90s. Susan I am hoping and praying for good breathing weather for you.

[susan-howitt]

Having same problems as Malcolm, not able to post since yesterday bar short posts

[Charlene Marshall]

Malcom and Susan,

Hi @mal-com, and @reglois

Thanks for sticking with us through the technology difficulties. I’ve just asked our tech team to ensure both of your usernames are on our “white list” which means your content should be held, or posted without any errors. If you keep having troubles please do let me know. I’ll do my best to get us all through the technological mishaps – especially because we value your contributions as important members of our community.

Take care,
Charlene.

[Charlene Marshall]

Hi Nan,

 

Thanks for your note – nicer weather today here, huh? I’m glad your PT is helping you use the spirometer and establish breathing techniques that will hopefully help! I think it would be wise – keeping in mind, I am not a medical professional – to have a 6 minute walk test done for you. Your oxygen is going to be optimal during rest/sitting periods, these likely won’t allow you to get an accurate reading/understanding of your needs during exertion or movement. Can you ask your PT about getting this set up, or your doctor? If your sats are in the 90s during sitting that’s great, but do they drop lower when moving about? If so, this may be an indicator of needing oxygen (while I can understand not wanting this!), especially if the saturation’s drop below a certain point. Keep me posted!
Charlene.

 

 

[nan]

Hi Charlene

I was thinking that when I go to the ILD clinic in Toronto next month they would do a six minute walk test???? Should i buy an oximeter on amazon and do as Susan did charting sats with different activities? Yesterday i really “over did it”. I know you have talked about this before, my family does not get that i get tired/fatigued easily. I babysat my grandson overnight, he is 8.5 months old, it was too much for me. Yesterday i was so exhausted. At bed time I got so SOB I was scared. I have had these “spells” before and each one is so scary. I was thinking of calling 911 but my husband propped me up on pillows ( one is feather, i will throw that away today) put a fan on and talked me through it. Today I am coughing a lot and just wore out. I am trying to stay positive but I feel so useless sometimes and that is why I over do things and pay the price. i do wonder if i need oxygen, at least at times. I can go for good walks and do things around the house as long as i go slow, putter and rest. I am nervous about Christmas.

[susan-howitt]

Hi Nan

The minimum they (should) put on script for oxygen is 16 hours, research has showed it is not effective at lower hours. I can sleep without so use the 16 hours for the days, have a back pack so can walk my dogs, only on the flat now, for 3kms. If you are not a hypochondriac, get an oximeter, I only checked for the first few days whilst I wrote the chart and when ever I feel out of puff, rest until my sats come up, takes a minute or two only.   To really check my sats the hospital did three deep vein tests in my wrist, not that comfortable but for more reliable than the oximeter which is only a good guide.  Best of luck for next month.  So right to get rid of feather pillow !!.

Thanks for the white list Charlene, all working perfectly now