This topic contains 20 replies, has 11 voices, and was last updated by  Charlene Marshall 3 weeks, 3 days ago.

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  • #20810
     Charlene Marshall 
    Keymaster

    It’s no secret that the summer months in southwestern Canada, or along the eastern seaboard of the US can bring with it some extreme humidity. We’ve had a few weeks where the temperature rose to 40 degrees celsius or higher with the humidity factor, and I notice a huge difference in how I tolerate those temperatures since being diagnosed with idiopathic pulmonary fibrosis (IPF).

     

    Prior to my diagnosis of this chronic lung disease, I’d embrace the heat and humidity but now it affects me in different ways, and I find extreme temperatures difficult to deal with. I’ve also experienced something this summer that I’ve never dealt with in the past, and I wondered if other patients living with IPF/PF have experienced this as well.

     

    Two weeks ago at my cottage I became overheated very quickly, to the point of sweating through my clothes and just not being able to cool my body down. I felt fine; I wasn’t light headed, dizzy or feeling unwell at all, just hot and couldn’t get cool despite sitting in the air conditioning. My family was concerned as my face was flushed (red all over, including my neck) and my hair and clothing were soaked from sweat. It was uncomfortable because no one else seemed to be that hot! The temperature was warm, but certainly not as hot and humid as it had been other days this summer. This has since happened again, making it twice now where I’ve overheated and not been able to cool myself down.

    Have you ever experienced this?

    If so, does anything help?

    I’ve never felt bad as a result of overheating, it is just persistent sweating and my face/body feeling flushed which takes hours to cool down. This is new for me!

  • #20828
     Rob Tyler 
    Participant

    Living on the Chesapeake Bay in the summer, we have high humidity to deal with.  I do not break out in a sweat, but my breathing is labored while trying to enjoy being outside.  I keep a check on my 02 level with the finger meter.  If we have a breeze, I can do right well with light activities.  And if the humidity is down, with a breeze, I am very comfortable.  Just sitting on the open porch, watching the river, I need a fan blowing, or air moving, to feel comfortable.

    • #20846
       Gordon White 
      Participant

      I have Mayo Clinic diagnosed Idiopathic Pulmonary Fibrosis since 2012 and use O2 24/7.  For the past 4 years, the wife says the house is too hot and I say it’s too cold.   She can tolerate the thermostat set at 79 degrees F and I do too with the use of a long sleeve flannel shirt.

      Never once have I considered the cold intolerance to be a side effect of IPF.  At 83, there are too many other possibilities.  I do not believe that heat intolerance is a proven side effect of IPF.  Thank of the thousands of people with heat intolerance who do not have IPF.

       

       

      • #20849
         Mark Koziol 
        Keymaster

        Hello Gordon, before my transplant I suffered as did you with being cold all the time. I was in a Kansas summer with heat index in excess of 115. I had to have a sweatshirt on just so I wouldn’t shiver. I guess this is the way our bodies dealt with the pf. No explanation could be given by doctor. I’m usually a shorts at 50 guy but when I was stricken I immediately was cold all the time. My suggestion put on another shirt to keep warm as I did because my wife was also like me; wanted to be cool. Like they say happy wife, happy life. Best wishes, Mark

  • #20829
     Charlene Marshall 
    Keymaster

    Hi Rob,

    Thanks so much for getting in touch and sharing your experience with heat and humidity. Similar to you, I really struggle to breathe in very humid temperatures. Do you notice your 02 readings lower when you feel laboured breathing due to the heat? I haven’t noticed this correlation myself but I haven’t looked very hard yet either! I spent some time in Chesapeake Bay a few years back, beautiful spot 🙂

    Charlene.

  • #20831
     Rob Tyler 
    Participant

    Charlene,  Not using 02 yet, I monitor my 02 levels when I feel my breathing is labored.  With this humidity, I do see my numbers stay in the lower range of the 90%, averaging 93.  With a little exercition, they will drop as far as 88%, and I can feel the difference.  At rest, with no humidity, my numbers stay around 96.  One thing I have noticed, is how much exercise helps my 02 numbers.  Using my elliptical bicycle (inside) for 1/2 hr., I can get my numbers to 98% at rest. Not having the elliptical at my river home is frustrating, and something that I know I need to keep ahead of the IPF.

    Always enjoy keeping up with Yours and the other folks post.  Wealth of information on our daily life, and the information that is shared.

    • #20836
       Charlene Marshall 
      Keymaster

       

      Hi Rob,

      Thanks for your reply, nice to hear how you’re doing. Glad you are monitoring your 02 levels when your breathing is laboured, very important to ensure our other organs are being adequately oxygenated. I am very affected by the heat and humidity as well unfortunately. Hopefully you’re getting the cooler nights like we are now in southwestern in Ontario, it is nice having the windows open and breathing in the fresh air. Apparently we’re in for another heat wave though over the next few days!

      Kudos to you for using your elliptical bike, I know exercise isn’t always easy with this disease but like you’re noticing, very important. I’ve thought about getting one of the recumbent bikes for my basement, as my treadmill is getting too tough. Glad you’re noticing an increase in 02 saturations with exercise, that is great!

       

      Thanks for the kind words about the forum, I am so glad it is helpful for folks. We’re very lucky to have such a great online community of support. Enjoy your weekend 🙂

      Charlene.

  • #20832
     Thom 
    Participant

    I too have a terrible problem sweating.  I worked outdoors for 53 years and never broke out in sweats as I do now.  I awake some mornings in the bed sheets look as though water was poured over me.  The first time it occurred I freaked out thinking I wet the bed!  

    The other day I felt a bit tipsy as I was sweating.   I checked my ox level and I was between 91-95.  So far I’ve never fallen below 91.

    All that aside, I still have difficulty with the Ofev.  I go a few days with no side effects, than suddenly diarrhea sets in for the day.  Although I have to say, since Charlene suggested I take half Imodium, along with a banana in the morning prior to the Ofev, its held a great deal to ward off the diarrhea

    The truth is, were it not for so much shortness of breath I’d never know I had IPF.  I cannot exercise or walk because I have a double hernia.  When I have it taken care of I hope to get moving more.  The problem is so far I cant find a surgeon that will operate.   They said the risk is too high to be on a respirator during conventional surgery.  The option is arthroscopic surgery.   The risk there is carbon dioxide is used to inflate the stomach.   After the surgery the gas has to escape through the lungs.  So, at this time I have no idea where I’m at.

    One day at a time!  Along with the serenity pray.

    Good luck to all!

    Thom

    • #20837
       Charlene Marshall 
      Keymaster

      Hi Thom,

      Have been thinking of you, thanks for checking in and sharing your experience with this topic. The overheating is something that is new for me this summer, and I am really trying to track when it happens, frequency, anything that precludes it, etc. Hang in there, and let me know if you find anything that helps or that it might be linked too. Sometimes it isn’t even the hottest of days outside when I experience it!

      Sorry to hear about the Ofev still causing you trouble. Had I shared with you that the sublingual (under the tongue) immodium tablet has been very effective for me? I’ve told a number of people this, so if I shared it with you already, I apologize. For some reason I find this route of the medication so much more effective than the oral tablet. Eating a banana with my morning medication helps me too!

      You’re right: one day at a time and feel free to reach out here whenever you need. We’re all here for you! Enjoy your weekend.

      Charlene.

  • #20847
     Ruth Edwards 
    Participant

    In the last two years I’ve become a walking, human puddle.  I’m always hot and have to dress in layers, so I’m always able to strip down to just a tank top.  This is happening now throughout the year as well.  I literally will be fine/dry one minute and then my head feels like it’s on fire, my face is red and I look like someone is holding one of those rainforest showerheads over me.  I already went through menopause so I know it’s not that but, cruelly..it feels like getting to live it all over again!  I have actually made an appointment for labwork to check my thyroid.  I wondered if all the strong meds have somehow effected that.  PS..I sleep with a large fan right next to the bed, face level and even then I still overheat.

  • #20850
     Mark Koziol 
    Keymaster

    Hello Ruth, I am sorry to hear of your troubles. Before my transplant I was totally opposite of you. I was cold all the time and needed to wear a sweatshirt just to avoid shivering. Maybe your doctor can help with this. Best wishes, Mark

  • #20853
     Malcolm Mann 
    Participant

    Hi all

    No problems with heat here at the moment, we’ve been in New Zealand for the last 3 weeks, cool temperatures and light showers pretty well every day. In between the showers it has been perfect IPF weather.

    Hot weather really effects my exercising ability, back home (Australia) I walk early on the  morning before the heat sets in. I haven’t checked my O2 saturation but as the temperature gets hotter I get really slower. We do have an ocean to fall in when it gets ridiculous.

    Here in NZ we visited Rotaroua which is a centre of geothermal activity, with geysers, boiling pools, hot streams and mud pools, with a strong Sulphur smell pervailing. beforehand I was worried if I would be able to breath at all, but it wasn’t a problem.

    Thom and Charlene I’m still having problems with Ofev, I have been on half dose for the last month, (which has been great) I’ll see the lung clinic when I get back.

    Regards

    Mal

     

    • This reply was modified 4 weeks, 1 day ago by  Malcolm Mann. Reason: ofev menttion
    • #20882
       Charlene Marshall 
      Keymaster

      Hi Mal,

      Thanks for the update, and sharing a bit about your NZ travels. I’d love to see NZ, it is a high destination on my travel bucket list (though, where isn’t? LOL) so glad to hear you are finding the weather tolerable with breathing. I also seem to be really affected by the heat, especially this summer!
      Goodluck at the lung clinic when you return to Aus, and glad to hear the Ofev has been a bit more tolerable with the dose change. Hang in there, nice to hear from you!
      Charlene.

  • #20879
     Charlene Marshall 
    Keymaster

    Hi Gordon,

    Thanks for sharing your experience with us and writing. You’re right – sometimes there are a lot of other factors to consider as the potential cause of temperature intolerance, be it hot or cold. Just something I’ve noticed this summer and can’t attribute it to anything else. We posted this topic on social media as well (our PF News Facebook page) and many folks commented saying it is something they’ve experienced since their IPF diagnosis. Odd how that is, I can’t help but wonder if there is a correlation but you’re right too, could be other things. Thanks for writing!
    Charlene.

  • #20843
     Connie Lum 
    Participant

    Hi everyone,

    I live on the west coast, about 1.5 hours east of San Francisco. It gets hot this Far East but not humid. I am on Esbriet for almost a year. Tolerating it well so far. You would never know I had IPF. I try and walk 5 miles a day in the morning. I have noticed that I’ve sweat more lately. I usually don’t break out in a sweat until after I stop doing something but lately it’s been while I’m walking . I also get hot faster than before. It’s not menopause either. Been there. I sometimes feel like  I’m more tired or short of breath at times but when I get home and check my oxygenation it usually is 94-98. I’m glad you posted this. It didn’t occur to me that it may be related to IPF or the meds. I really enjoy reading this forum. Thank you .

  • #20883
     Charlene Marshall 
    Keymaster

    Hi Connie,

    Thanks for writing, nice to hear from you! I am hoping to experience similar weather as you say you get, while I am in Hawaii: hot but without the humidity. I think this will make a huge difference with my ability to breathe. Amazing that you can walk 5 miles in a day, kudos to you Connie! I don’t know if I could/would want to do that without IPF, so that is amazing. Also, really glad to hear you’ve been tolerating the Esbriet well!

    Yes, I can be entirely certain that the overheating/sweating is linked to my IPF but it certainly isn’t anything else obvious for me. I am 31 so I wouldn’t imagine it is anything hormonal related, and my thyroid was just checked, no issues there. I can only attribute it to my intolerance of the heat as IPF progresses, or a side effect of the medication. It has only happened twice this summer, but I am noting when to see if I can find some sort of trend to try and identify the cause. I’ll keep you posted. Thanks for sharing – you’ve inspired me to try walking a bit more this week to see if I can manage or keep it up.

    Charlene.

  • #20901
     Kathleen Greco 
    Participant

    @thom, I have a hernia also & it’s very hindering to me, it’s very large & now wonder if it has something to do with IP  also same thing with me … it’s hard to be really comfortable but I have a great Dr’s. & hospitals too.

    I have checked also about the sweating  as I do have issues with that..ok I’ll write  more later

    sta

  • #20933
     Luke R Matthews 
    Participant

    Hi Charlene,

    This is my first post. I have been following the website since very close to my diagnosis of IPF in September 2018. Before my diagnosis I was cold all the time, even in the high humidity of a summer day in south Alabama. It turns out I have an under active thyroid which is  being treated with meds.  I started my IPF treatment on Ofev but could not tolerate it so UAB changed me to Esbriet. I am having very few side effects but I am very cautious of the sun. It almost seems to hurt when it hits my exposed skin. I have always been a person with heavy perspiration. But now it is as you say soaking me through all my clothes. I don’t feel so much that I am overheated though my face does turn red. I do stop and rest and drink plenty of fluids ( combination of water and sports drinks) to replenish. I am on O2 at night. I added a window ac unit in my bedroom and sleep much better with the room cold.

    • #20945
       Charlene Marshall 
      Keymaster

      Hi Luke,

      Welcome to the PF forums – thanks for writing us! While I wish none of us had to deal with this cruel disease, please know this site is filled with wonderful, caring individuals who will try to assist in any way that we can. I appreciate hearing a bit of your story – I always tend to forget about the importance of having our thyroid checked when it comes to irregular temperatures. Good reminder! Sorry to hear you didn’t tolerate the Ofev, but glad Esbriet is going well for you, aside from the sun sensitivity. This is one of the reasons I think I would have a hard time with this medication, but if Ofev stops working/being tolerable for me, I would try Esbriet too.

      Glad you’re finding ways to alleviate the heat from your body through hydration and the AC unit in your room. I also sleep with the fan beside my bed, and am much more comfortable in a cool room. I had no idea how many people experienced the ‘overheating’ phenomenon that I did, wow. Thanks for sharing and feel free to write any time.

      Kindest regards,
      Charlene.

  • #20936
     Steve Dragoo 
    Participant

    @charlene-marshall

    Hi Charlene, Interesting to read this article and thank you for sharing.  When I first arrived in the Philippines, I had to adjust to the constant high humidity, generally high temperatures, and city air pollution. At first, my feet slightly swelled but that lasted just a day or 2. Sometimes I will go for a brief walk mid-day to see how I feel and typically just fine.

    But when I  work a couple of hours straight like yesterday, I get overheated and it takes hours to recover. Usually, my shirt is soaked and I am winded easily with a higher heart rate and uncomfortable at first, but if I stop a few minutes and just sit with a fan, I am soon ok but will overheat faster if I continue working. So it takes 4 or 5 hours to recover completely compared to 15 minutes a few years ago.

    All things considered, I think that is ok because I have been known to walk barefoot in the snow and exercise with shorts on when it is in the 30’s (F), 0 – 3 (C). Still, IPF slows me down a lot and being 70 which usually brings other ailments I trust I will keep going a few more years.   Stay well… – Steve

  • #20947
     Charlene Marshall 
    Keymaster

    Hi Steve,

    So nice to hear from you, thanks for writing and replying to this topic! I had no idea how many people have also experienced this ‘overheating’ phenomenon that I wrote about. It is nice (though I wish we never had to deal with any aspect of this disease!!!) to feel as though I am not alone in some of the symptoms IPF brings. Glad you’re still able to walk in the Philippines weather and feel okay, I hope that lasts for a long time for you!

    My experience in the recovery phase of overheating is like you; it takes much longer to cool down than ever before. Usually hydration and air conditioning/a fan helps but the last few times it has taken awhile. I even had to change my clothes because I was so warm. I’ll have to keep this in mind when I am out in Hawaii! Stay well, and thanks as always for writing. Can’t wait to “bring the forum” along with me to my Hawaiian travels in just 34 days 🙂

    Charlene.

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