[Liam Mullaney]

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

[Liam Mullaney]

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 on level of exertion. I use my oximeter to figure out how much oxygen I need. I also use a spirometer to check my FVC and the results are transmitted to an App called PatientMpower which is accessible by my respiratory consultant. The worst thing now is the breathlessness and the constant coughing. Stay safe everyone

[Liam Mullaney]

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 morning I find my throat is sore from the coughing the night before and I gargle with Disprin and this relieves the pain. Hope this helps

Liam from Ireland

[Liam Mullaney]

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 daughter who is a nurse regularly says to me “Dad, shy patients die” so keep learning and asking

warmest regards

Liam

[Liam Mullaney]

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 helps me.
I wish you well on your IPF journey.

Best Wishes

Liam

[Liam Mullaney]

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, steps and sleep patterns. I also have an app called PatientMpower that records my SpO2 using a Nonin oximeter and my FVC and FeV1 using a spirometer. PatientMpower have just introduced recording of a 6 min walk test but I haven’t tried it out yet. I know this  probably all sounds a little complicated but I feel that I need to take control of my stats so I can have meaningful reviews with my respiratory team

[Liam Mullaney]

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 responsive as an Nonin finger oximeter but it’s very good at tracking levels while sleeping.

[Liam Mullaney]

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.

[Liam Mullaney]

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 and with oxygen I can exercise quite well with SpO2 staying around 92 and heart rate not going above 125. So the plan is to give me an Inogen machine to cope with exertion. However, I have no idea if it’s possible to reverse DLCO trend.

[Liam Mullaney]

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

[Liam Mullaney]

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 antibiotics given for a chest infection won’t work to clear pseudomonas.
Best Wishes

liam