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    • #11131

      Hi Everyone,

      If you’re Canadian, you know that this winter has been exceptionally cold and frigid. Some evenings in December, January and even so far in February, evening temperatures have dropped to -38C. While I never really tolerated the cold well, since being diagnosed with IPF, I find the winter months so much harder to deal with. It feels as though I cannot get warm no matter what I try: heated blankets, warm bath, heating pads, expensive leather gloves and hats, a warm coat, pre-warming my vehicle, etc. Not only do I really feel the cold in my lungs, making it harder to breathe and causing a dry cough; I also find my extremities are extremely sore and it takes a long time for my fingers and toes to warm up. When my hands and fingers are so cold, it does prevent me from doing fine motor tasks such as typing, dialling on the phone or hanging onto things like my keys, as an example.

      Does anyone else experience this since their diagnosis? I did notice it last year, which was my first full winter with IPF (2016-2017) however this year, my pain from the cold and the intolerance of cold temperatures is significantly worse. If you have experienced this before, is it something that typically remains the same for you or has it worsened over the years? I look forward to hearing from others about their experience in the cold Canadian winters, and if anything in particular is helpful for you managing the frigid temperatures.

    • #11367
      Terry Mcloughlin
      Participant

      Charlene, your posts are very interesting and motivated me to join this group. I hope I can learn more about ways to improve my quality of life living with IPF.

      I have been very lucky since my diagnosis 5 years ago. I have many good days but if I come down with a cold or lung infection I have very bad days, for many weeks. My family and friends know how vulnerable I am and take precautions to protect me.

      I too enjoy travel and still try to get away a few times during these long cold winters in Ontario. In December, I visited one of my favourite spots in Cancun where my symptoms where significantly better. Within 24 hours of arriving there, I could climb 2 flights of stairs and was able to walk the beach. At home, I can barely climb 4 stairs without needing to rest and catch my breath. I have been trying to understand what factors contribute to this, temperature, humidity or pressure. I think most lung related diseases have reduced symptoms in moderate temperatures and patients with asthma and allergies prefer the climate in Arizona which is dryer and a higher elevation than the coastal areas, but I feel best at sea level with hot temperatures and medium to high humidity. I would appreciate other people’s opinions on what climate is best for them?

      • #11371

        Hi Terry,

        Thank you so much for joining the PF forums and contributing to this post. It is always so nice to have new members, and I am very grateful for your kind words, thank you!

        There are some wonderful folks here who have shared really great information about focusing on quality of life vs. quantity. This was so hard for me to accept at first, as I just turned 30 at the end of last year. However, it has kind of been a gift in a way as I really have learned what (and who) is important, and where to focus my limited energy. I think because of this I really do live a more full life. I know all of this sounds cliche, and I still have my moments of sadness, anger and frustration due to this disease and how it has changed my life but the importance of quality is something I could not have learned without my diagnosis. Is there anything in particular that you were wondering about, in terms of improving your quality of life with IPF? If there isn’t some discussions in the forums already about a topic that might be of interest to you, I can write about it or we can anonymously boost it to our social media pages, asking people to contribute their thoughts/ideas. Let me know.

        I am inspired by your story, that you are 5 years post-diagnosis and still have good days (when you don’t have an infection/cold)…. that is wonderful news and I hope this continues on for a long time! It is great to hear that your friends and family take precautions to protect you, not everyone does so this is a gift too. I find the population most willing to protect my compromised immunity is my workplace and colleagues. I am so thankful for this, as I really feel cared about when they take precautions to help keep me from getting sick.

        This is such a good question re: what environmental factors contribute to our lungs being better or worse… I have often wondered this myself. I actually made a forum post about it, which can be found here: https://pulmonaryfibrosisnews.com/forums/forums/topic/rural-vs-city-living-with-pf/

        although I didn’t have anyone respond. Maybe I will try ‘boosting’ it again and seeing if it makes a difference. I’ve had a few people share with me that they feel the best at sea level, and in my mind this makes sense given the congestion and pollution that can be found in city living, or far away from the ocean. I’ll see what I can find out for you. I meant to ask my Doctors this when I was there last week and forgot! Have you ever asked one of your Doctors about this? I’d certainly be curious to hear what a few different respiratory Doctors have to say….

        I look forward to continuing to get to know you and thanks for joining, you’re certainly welcome here Terry.

        Sincerely,
        Charlene

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