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    • #13959

       

      Following a diagnosis of idiopathic pulmonary fibrosis (IPF), so many things change for a patient. Emotionally, our ability to cope with everyday tasks changes and can become overwhelming as our life is suddenly threatened by this fatal lung disease. Socially, it can feel like no one understands what we’re going through and as a result, friendships are tested, changed and sometimes even breakdown as a result of our diagnosis. And physically, our bodies endure major changes as the disease progresses and eventually steals our ability to breathe.

      One unexpected physical side effect that I can only attribute to IPF, since this has happened following my diagnosis, is my intolerance for the heat. I have always loved summer months, and the heat never bothered me. Understandably once diagnosed with a lung disease, I’d find it harder to breathe in the high heat and humidity of summer, but this isn’t only what I mean about being intolerant of the heat.

      My whole body is now effected by the heat. I get headaches if I am outside too long, I also overheat easily and sweat more frequently than I ever did before. My eyes are more sensitive to sunlight, and my skin burns a lot easier without a very high SPF sunscreen (which is due to the anti-fibrotic medication I am on). Not only am I intolerant of the outdoor heat and humidity, I also hate being hot indoors and am finding that is happening more frequently as well.

      This summer has been very hot, humid and sticky where I live. It might be one of our hottest summers on record actually! As a result, I’ve had my air conditioner (AC) working overtime to keep my house cool and typically have the AC set at 22.5 degrees celsius. Pretty cool, right? I am still so hot upstairs! I had to get a fan to put beside our best and circulate the air, in addition to the AC running consistently at 22.5.

      Does anyone else experience this heat intolerance since your IPF/PF diagnosis?

      Have you noticed it since starting the anti-fibrotic medications for this disease?

      I’ve written a few difference columns about this over the years, including Dealing with the Heat Since my IPF Diagnosis and how Heat and Humidity Can Become Another Hurdle in coping with IPF. However, I think my body’s overall inability to deal with the heat is getting worse as now it is not just my lungs that are impacted by the heat but I experience other heat-related issues now as well.

      If this is something you’ve noticed getting progressively worse since your diagnosis, I’d love to hear from you! Please share your experiences, and any tips/tricks or information you might have in making this a little easier to manage. Thanks in advance!

       

       

    • #14000
      Cooper P Abrams III
      Participant

      I too cannot tolerate heat. I cannot sleep in warm room. I have to keep the room around 68 degrees which is too cool for my wife. She sleeps in another room. I also have two fans running at night. I have three wireless switches by the bed to control the fans and the light. Works great. With the AC and fans I do well.

      • #14015

        Hi Cooper,

        Great to hear from you! I often wonder how you’re doing, and am glad to see your contributions to the forums every now and again. I hope everything is going well for you 🙂

        Thanks for sharing your experience with this as well, and that the heat intolerance is similar to my experience. Perhaps it is just this summer (its been really humid here this year) and next summer I will be different, but I am like you and need both fans and an AC going otherwise I am just too hot and it compromises my sleep. In the winter, I am too cold so it seems that spring and fall are now the best seasons for me. It’ll be interesting to see if I am heat intolerant next summer too, not sure but definitely something I noticed more of this year. Have you noticed this getting progressively worse for you since your diagnosis, or have you always been intolerant of the heat?

        Thanks again for your reply and hope all is well!
        Kind regards,
        Charlene.

    • #14003
      Bill
      Participant

      That is weird because I am opposite. I do not tolerate cold well. I have to wear a jacket to any functions I go to if the room is air conditioned even in my house. I even have to drink warm water to keep from coughing. I do have a hot flash ( I know I am a guy) when I get into a coughing spell that only last a minute. I do although suffer through the coughs when I eat ice cream because here are just some things I refuse to give up. 🙂

      • #14016

        Hi Bill,

        Thanks for your reply and sharing your experience regarding temperature intolerances. Welcome again to our forums!

        In the winter months, I also do not tolerate the cold very well and have always been like that. However, this is the first year I’ve really noticed an intolerance for heat, as I always used to love the summer months and grew up on the beach. However this summer was exceptionally humid where I live and as my IPF progresses, that could be why I don’t like the heat anymore.

        Glad you have some solutions for you that prevent you from getting too cold! Drinking warm water to keep from coughing is a good idea, or even to alleviate a cough. Glad you can manage your cough for icecream, haha this is also something I wouldn’t be willing to give up. Life is just too short, isn’t it? 🙂

        If you like banana icecream, let me know because I just discovered a delicious recipe for making your own icecream with just bananas, milk and honey. Its delicious!

        Cheers,
        Charlene.

      • #14260
        Susan Howitt
        Participant

        Hate the excessive heat we have had this summer, seems fairly wide spread, glad some one else mentioned the hot flushes, have them too, thought I had left those behind years ago lol. Can’t say I am looking forwards to winter, fear getting stuck in because of the snow. This will be my first winter since my exacerbation (don’t know if that is just a French word or not) in March of this year, struggling to breathe normally now. Do you have to cover your mouth to help warm the air? I cannot imagine sleeping with my windows shut, have had them open summer and winter all my life.

        Bloomin heck Charlene 41° I’d melt, thought the 37 we had this summer excessive, it was also humid, unknown in these parts usually.

        I also love my ice cream maker. Did toy with the idea of making black plum ice cream !!! had load this summer, but decided to freeze and use them as lozenges instead, also a good way of keeping the dreaded munchies at bay. Like the idea of the banana ice cream.

        • #14266

          Hey Susan,

          Agreed, it sounds like the heat waves and humidity of this summer were pretty widespread. I was just saying to my Mom this weekend that I don’t remember a summer that has been this consistently humid in a really long time! I used to love summer, but now I am ready for the cooler temperatures of autumn. Oh well, soon enough I will be complaining it is too cold as our Canadian winter this year is predicted to be fiercely cold! I use a facemask in the winter months because the cold air really hurts my chest, and yes my entire house is closed up in the winter months. Snow removal is also not something I am excited about, and I should get on contracting someone to do that for me!

          Yes 41 has been excessive! Tomorrow is supposed to be that hot again and then I think we’re getting  a”break” from it and it’ll only feel like 31 or 32 degrees instead. Brutal huh?

          If you give the banana icecream a try let me know, it is quite delicious! I caved tonight and went for real icecream with a friend 🙂

          Enjoy your evening!
          Charlene.

    • #14031
      Bill
      Participant

      Okay,I would like to see what the banana recipe entails as I would just mix a banana in with vanilla ice cream. Just lazy I guess. 🙂

    • #14048

      Hi Bill,

      Thanks so much for your reply, and I’m glad you’re interested in learning more about this recipe! It is really good, and is often my “sweet” go-to craving at nighttime as it is pretty healthy actually. Normally, you would take icecream and/or frozen yogurt and mix a banana into it, I agree. However, this is a bit backwards.

      When you have some bananas that are ripening, so are mostly brown, throw them in the freezer to freeze all the way through. Then when you feel like making this banana icecream recipe, peel the frozen banana and add it to a blender (the riper the banana, the more flavourful) and add milk and a little honey to it then blend until desired consistency. I’m not sure what makes it get the good texture it comes out with, perhaps it is the frozen banana and liquid milk, I’m not sure. But it is really good! Sometimes I have it without honey, and sometimes I add it or maple syrup if I want it just a little sweeter.

      Let me know what you think if you try it 🙂

      Cheers,
      Charlene.

    • #14068
      Bill
      Participant

      Okay thanks. Sounds good. I will pass it on to my cook. (wife)

    • #14070

      Sounds good Bill! Its real easy to make, let me know if you both give a try and what you think 🙂
      Cheers,
      Charlene.

    • #14127
      Cooper P Abrams III
      Participant

      Charlene,
      Sorry be so slow to respond. Before IPF I always like to sleep in cool room. Now it is required. I cannot sleep in a warm room. My dear wife likes warmer. I turn the AC up car also. I have noticed it getting worse. Having to make lots of adjustments in my life which is no fun….

      • #14163

        Hi Cooper,

        Thanks for your reply and getting in touch. No worries at all regarding taking some time to reply, I hope that means you’re doing well and enjoying the last few weeks of summer. I’m trying to enjoy it, but today it was 41 degrees Celsius with the humidity here. It was brutal and I am ready for autumn!

        I’m sorry to hear about all of the adjustments you’re having to make, especially with fluctuating temperatures. That said, I appreciate you sharing this and it helps me feel a bit better since this is something I am experiencing as well. It feels either two extremes: way too hot and sweating or freezing cold/shivering. There never seems to be a happy medium! I also need to sleep with a fan on now, an the AC although I can tolerate it not being too low right now. When I get too hot, it is impossible to sleep and I am very grumpy the next day!
        Do you experience the two extremes, or one (ie. hot) is more frequent for you than the other?

        Thanks,
        Charlene.

    • #14133
      Bill
      Participant

      being as the hypothalmus in the brain controls body heat ( I just looked it up)what does your pulmonologist say?

       

       

      • #14164

        Hi Bill,

        Hmm, you actually raise a really good point: I’ve never asked my pulmonolgist about this! Whenever I see him, I actually have a list of questions that uses up most of our time together. I should add this to the list for next time, because it is inevitable that I always forget to ask something. Not sure if others’ have asked about this? I also have a neurologist following a small head injury after a car wreck this past fall so I could ask him as well. Thanks for the idea!

        Cheers,
        Charlene.

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