Charlene Marshall

Hi Linda,

Thanks for writing and sharing an update. Wow, kudos to you for explaining exactly how you felt to the pulmonologist, and having a second physician’s information copied on the HRCT results. This probably made him realize that he is doing something you don’t like, giving you the opportunity to explain. Really glad he suggested pulmonary…[Read more]

Hi Jaime,

Oh, no problem – hello from a fellow Canadian! Calgary is a beautiful city, did you ever travel out to Banff or Canmore? Some of my favourite destinations to see the beautiful mountains. Certainly one of the downfalls (in my experience) of Canadian summers in the provinces that aren’t coastal, is the high heat and humidity. Glad you are…[Read more]

I will keep my fingers crossed for you Cynthia! Please let us know how you make out on the two new drugs. I know the risks are there for catching a cold/virus, due to lowering your immune system but I hope it helps improve your ability to breathe. Thanks for sharing.
Charlene.

That is one of the factors I considered too Cynthia! I have to admit, it has been a very easy POC to travel with, aside from the weight but others tend to help lug it around for me. Would your insurance cover a POC? Really worth the investment if one can manage financially to buy it, though I recognize this isn’t always the case. Charlene.

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…[Read more]

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…[Read more]

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…[Read more]

Thanks for sharing Cynthia! Those are all things I’d factor into my “good days” as well, hang in there, cooler/crisp air is coming soon with fall just around the corner 🙂

Hi Nan,

Thanks for joining the PF forums – welcome! I know it is hard to be here, meaning we’re dealing with this dreaded disease but know that we all understand on this site, and sometimes that is really comforting. I sent you a private message as well 🙂

I find bigger meals are harder for me to have as well, and benefit from 5 smaller meals a…[Read more]

Hi Jim,

Thanks for sharing your experience about the bi-Pap and improved sleep quality. That is so helpful for those of us struggling to sleep – which machine did you switch to in May 2019 and find improvement? Wishing you the very best, I know the breathless and exhaustion is so hard to navigate as a home owner and wanting to keep up with both…[Read more]

Hi Kathleen,

Thanks for writing to us regarding this topic. Yes, I’ve heard the heat & humidity can really impact those of us living with IPF. Although it is interesting, I’ve heard some patients say the cold effects them more. What symptoms did you go to the urgent care center for? Better to be safe than sorry, and I hope it wasn’t anything…[Read more]

Hi Cynthia,

Wow, thanks for sharing – what a different week you’ve had! Does the doctor think the Prednisone and Cellcept will bring down the inflammation, and if it does, he can conclude it is an autoimmune issue with inflammation vs. scarring and IPF? Goodluck with the drugs, I hope they don’t have any side effects and work wonderfully for you!…[Read more]

Hi Linda,

That is the machine I have – the Respironics SimplyGo machine – and you’re right, the only complaint I have about it is it’s weight. It’ll be interesting bringing it with me to Hawaii, in terms of lugging it around because it is heavy, agreed. Wishing your relative the best!
Charlene.

Hi Joe,

Thanks for writing and sharing this tip about hydration, very important for all of us to remember! Sorry to hear about the issues with Ofev 150mg, I am hopeful you’re tolerating the 100mg a little easier. I’ve heard of a lot of folks having to make this change. Take care, and feel free to write any time. Good idea as well re: the diluted…[Read more]

Hi John,

Oh thank you so much – this information is so helpful! I am going to check out the backpack option now for my POC on Amazon and note it down so I can share it with my oxygen supplier next time they are here. Thank you so much, what a great option to be aware of.

Charlene.