Bill Mattila

Hi @kathleen,

I completely agree with you – it seems that fevers or at least unstable temperatures is more common in PF patients than anyone wants to admit. Sure seems that way based on everyone’s contributions here. Thanks for sharing your experience, though sorry you can relate!
Charlene.

Hi @6yearvet

I’ve heard Gabapentin is really helpful for sleeping! Thanks for sharing that it works well for you 🙂
Char.

@mal-com,

As always, so great to hear from you – thanks for writing and taking a chance on getting the content to post successfully 😉

Hope you’re still enjoying tazzie and thanks for sharing that pursed lip breathing helps with sleep. I need to try that before bedtime!
Char.

Hi @tammyjbell1972

I think the pain really depends on the source and the person dealing with it. This thread is for people to share their experience and try to find out what might be causing the pain, but folks don’t seem to have an answer to your question of why. Keep reading back and check the forums for previous threads/pages of information about this.

@davidaswain

Dear Mrs. Swain,

Thank you for letting us know about David, but I’m so sorry for your loss. It took me a few days to reply because I was so sad to hear this news. I loved corresponding with David on these forums, especially about your travel to New Zealand and how much he loved that. He was an integral part of our forums community,…[Read more]

Hi Libby,

Thank you so much for this through explanation of your experience with both IPF and asthma – it is so helpful! 🙂 It’s always best to hear of others’ experiences so I really appreciate you taking the time to write.

It sounds like some Pulmonologists will prescribe ventolin as part of managing IPF symptoms (with or without asthma) and…[Read more]

Hi Charlene,
I hope I can help a little with your asthma-IPF question from my experiences. I never had asthma until I had a bad case of bronchitis ages ago, at which time my primary gave me an inhaler. Then years went by with no incidents at all until a couple of years before my IPF diagnosis, I began to have more frequent bouts of bronchitis…[Read more]

Hi @steve-dragoo

So nice to hear from you, as always friend and thanks for your kind words. Thankfully, the temperature spikes have settled down a bit and last bloodwork I did, my WBC was pretty good; not indicative of an infection anyways. Could be lasting side effect of COVID, everyone seems to be different in terms of side effects that don’t…[Read more]

Hi Midge,

Thanks for sharing this with us, though I know it’s really frustrating to manage weight when the medications cause such a food aversion. I’m sorry you’re experiencing this! In terms of calories, could you had a high-calorie protein shake to your snacks or meal for extra calories? This is something I know many other fellow patients have…[Read more]

Good points James! Thanks for sharing and for this reminder. So often we don’t think of POCs as medical devices but since they require a prescription for use, they certainly are. I appreciate your post.
Be well,
Char.

Hi @jim-dawson

Thanks for writing and sharing this important discussion with us, really interesting…
I can’t say I’ve heard of this, but I see my Cardiologist very sporadically. Did your doctor explain what that might mean in terms of a diagnosis or how you live your life (ie. with hypertension, or could it be PAH)? Just curious what it was he…[Read more]

Hi @tammyjbell1977 : who are you directing your heart rate question to? I can tag them for you in hopes to get an answer to your question.

Take care,
Charlene.

So great to hear Linda! If you’re comfortable and think of it, please report back and let us know how it goes. Hopefully they can figure out the source of the fever and correct it relatively quickly. Im thinking of you!
Charlene.

Hi Bill,

Thanks so much for writing and I’m so glad to hear you’re managing with Ofev so far without many side effects, that is great news! I can’t share any personal experiences about Wei institute or other herbalists, but can share with you that I was one of the patients who have to go on/off Ofev several times before my body would tolerate it.…[Read more]

Hi @katesmithson

I forgot to include this link in my previous reply to you, which includes the POCs approved for flying from the Federal Aviation Administration. You can check them out HERE.

Hope this helps 🙂
Charlene.

Hi Tammy,

I can’t say for sure as I am not a physician, but I have talked to my doctors about this and others’ who’ve spoken to theirs. When you have a lung disease, your body is often working harder to breathe than someone with healthy lungs, which causes the body to use more calories. In combination with food aversion or lack of appetite some…[Read more]

Hi Tammy,

Thanks so much for writing and really good questions regarding PFTs. They can be really hard to decipher, and take a lot of time to learn/understand. Here is a really good website to help you better understand what PFT values mean and be able to interpret your own results: Pulmonary Function Tests | John Hopkins Medicine. 

Of course,…[Read more]

Hi Craig,

So nice to hear from you, and thanks for writing! Yes, POCs can be quite restrictive based on needing batteries or weight, depending on the flow you need.

It would be really nice to utilize this forum as a platform to exchange equipment that may not be needed or used anymore for fellow patients. I’m not sure if there are any legalities…[Read more]