Activity

I might have missed this on the thread, but one very helpful accessory for the Respironics Simply Go Mini concentrator is a backpack for use instead of the usual side strap.  The backpack distributes the weight evenly when you are walking, and has mesh at the bottom to allow for air flow.  If you are still active in walking, etc. it is a g…[Read more]

Hi Vishal,

Yes, this year has been particularly bad for those of us with the IPF/PF cough and getting stares from people who think we’re contagious. It’s been tough for many patients! I hope your Dad continues to do as well as possible, thinking of you.
Char.

Hi Ron.

Funny you mentioned scrapes and cuts becoming infected.  I haven’t had any infections, BUT I’ve found that wounds heal much more slowly in the last seven years, including the last three since I’ve been off all meds.

I love dairy products.  In addition to drinking lots of milk, eating cheese (and taking a calcium supplement while I was o…[Read more]

Hi Kate,

Hmmm, I’ve not experienced the runny nose from 02 use, aside from when I have a cold. Sorry I can’t provide any insight on this topic, but I’d be curious if others can and what options help them! Thanks for bringing this up Kate, I’m sure others experience it too.
Sincerely,
Char.

Hi Susan,

Oh, I’m sorry to hear this – that is frustrating, and I can certainly see how it’s disappointing! I hope the 02 suppliers can shed some light on additional options that will help you remain mobile. I know walking your dogs is important for your mental and physical health.
Take care,
Char.

Hello, Vishal – My dad had IPF 30 years ago and now I have another form called hypersensitivity pneumonitis. My symptoms got a lot worse during the first months of the pandemic and when I told my consultant that I was depressed and worrying about my own death she referred me for palliative care. It has been life changing. I go for physiotherapy,…[Read more]

Afternoon Charlene

Very disappointed, the first back pack was calibrated wrong, no wonder I was feeling so darn good and walked 3kms with 4 stops to get my levels back up, I now know it was delivering me about 8/9 ltrs per minute,  new back pack delivers 6 lts  and I still can’t walk the dogs as the track is very slightly undulating and that is t…[Read more]

Hi Vishal

For my diseases, CPFE, bronchodilators are dangerous so it is said

quote  *It is important to point out that the presence of emphysema and abnormal changes in pulmonary vascular bed in these patients may be associated with an imbalance in the ventilation/perfusion ratio (V/Q), as hypoxic vasoconstriction is one of the main mechanisms…[Read more]

I know this is an older thread, but I’ve started to experience the constantly runny nose due to using oxygen 24/7. It’s really, really annoying and embarrassing, too. Just wondering if anyone ever tries things the OTC Claritin or Zyrtec to dry things up, even if it isn’t due to allergies??

Hi Vishal, here is the link for the gabapentin topic I wrote, https://pulmonaryfibrosisnews.com/forums/forums/topic/gabapentin-is-a-proven-treatment-for-refractory-chronic-cough/
take care, mark

Hello Vishal, sorry for the late response. The experiences you are describing for your father are quite common for pf/ipf patients. Almost all of us have experienced some of your father’s symptoms. I have previously wrote a forum topic on gabapentin. Some of our members have taken gabapentin. Many have had success with eliminating their coughing s…[Read more]

My dad is also on oxygen 24/7 – putting it a higher flow rate has helped with his coughing. We also started him on Ventolin nebulizer (bronchodilator), which seems to be helping. If this stops working, we’ll get him on Gabapentin maybe.

Even I get stares when I cough; I can’t imagine for someone with PF…

Interesting Kathy, thanks for sharing but a bummer that no one seems to know how to reduce the CRP. I’ll be curious for this answer, and let you know if I find/hear anything. Mine remains quite high, though it has come down compared to the spring. I’m always curious to know what it is when I have bloodwork done. Take good care and thanks for…[Read more]

I have asked my immunologist, pulmonologist, rheumotologist and cardiologist about the elevated CRP and how to lower it.  No one knows!