Hi Charlene, further investigations found it was serratia and not pseudomonas and the IV antibiotic to treat it is Tazocin. I had it for months before they found the bug as regular antibiotics were no good. Lots of coughing and mucus, very debilitating. Apparently we with compromised are open to lots of infections.
take care

Liam

Hello Charlene, have you come across an infection called pseudomonas, it particularly affects people with lung conditions. The symptoms are lots of coughing with lots of phlegm and it’s very debilitating. It’s diagnosed by testing the sputum. The reason I mention it is because it’s easy to confuse this with a regular chest infection but the… Read more

Hi Bill,
The spirometer is from a company called MIR, Medical International Research and the product is called Spirobank Smart.

Stay safe and well
Liam

Hi everyone,
I was diagnosed with IPF in 2017 and on OFEV since 2018. My IPF has progressed to the point where I need a lung transplant. The key things to watch are FVC and DLCO, if these are declining every 6 months. These are measured when getting PFT, pulmonary function tests. I’m on oxygen pretty much all day varying from 4L to 8L depending… Read more

Yes coughing is so debilitating and so painful in the throat. I have IPF and find that I get coughing fits after eating dinner and when I’m trying to get to sleep. I think it’s a combination of tiredness and lying down. I just get tired about 8pm every evening. Sucking a sweet helps at night but also a cough medicine called Benylin. In the… Read more

Thank you everyone for taking the time to reply with your valuable experiences. Since the post my team gave me a nighttime SpO2 monitor to record my levels while sleeping. Unfortunately, I didn’t get to use it as I ended up in A&E or ER stateside and I’m now in hospital for the week. Not IPF related , might be gallbladder??
also Susan my… Read more

I was diagnosed in 2017 and living with IPF since then. Yes it get worse over time and one goes from requiring no supplementary oxygen to using oxygen for any tasks requiring any effort at all. However, in the last 6 months I have noted that my oxygen levels drop during the night when I’m sleeping and this is concerning. I sometimes wake up… Read more

Hi Cheryl,

I started taking Ofev back in Oct 2018 and while I have the odd GI issue, I have not thank goodness have any other side effects. I take the 150mg, one in the morning and one at night. I honestly don’t know how it has impacted my IPF progression and will probably never know but psychologically it feels like I am on something that… Read more

I think I will enjoy my Fenix 6s For now and see how the Apple series 6 manages the pulse ox. If it’s more responsive then I will consider changing, however, it’s not just about the reading but also about the software app on the iPhone. At the moment I have the Garmin Fenix 6s with associated iPhone app that records my SpO2 and heart rate,… Read more

Delighted to hear Apple are finally adding the Pulse Ox feature. As a happy Apple Watch user I stopped waiting for them some time ago and bought the Garmin Fenix 6s which has the pulse ox feature. It works quite well and it synchronises with the Garmin app on the iPhone so I can track SpO2 levels over time. I should say that it’s not as… Read more

Hi Martin, I’m on Ofev for over a year and have had one too many on a few occasions but didn’t have a hangover and liver is ok. I’m a beer and wine guy, so maybe the mixture of drinks.

Hi Mike ( @michael-lamkin) and Denny ( @deliassen) thank you both for your replies. Denny if you could let me know exactly what herbs you used it would be much appreciated.

Mike, according to Dr.Google a normal persons DLCO is 80. My physio has been monitoring me under exercise and without oxygen my SpO2 drops to 85 and heart rate goes to 150… Read more

hello everyone,

firstly I am new to the forum although I have been reading all the articles and discussions for many months and find them extremely useful.

I was diagnosed with IPF in July 2017 and started taking Nintedanib in Aug 2018. Thankfully I don’t have many of the side affects normally associated with this drug and it’s slowed down… Read more