[Ross Harris]

Thanks to Robert, Bill & Karen for the very helpful comments and advice. I have a call in to my pulmonologist and I am prepared to ‘crank it up’ to the point where I get the oxygen I need. Ross

[Ross Harris]

I was prescribed an InogenOne G5 about ten days ago with an initial setting of 2 0n the device. The G5 is portable and I thought that it would likely provide enough oxygen to keep my SPO2% above 90% while walking at an average clip, for about thirty minutes. It turns out that my expectation seems to be wrong as my SPO2% drops into the low 80’s. Usually my recovery % after walking for this amount of time is 93-94% and takes about 7-8 minutes. I’m tempted to move up to the next setting(s) of 3 or 4. My sitting % rate is 94-95% at about 94-95 bpm on the heart rate. The InogenOne G5 handbook (down loaded from the internet) is not very helpful.

[Ross Harris]

@david-helen

David:

So sorry to hear of your mother’s IPF diagnosis. I lost my ninety year old mother on June 19, 2019, from cardiac arrest triggered by IPF. The breathlessness can present quickly and increase. It may be very difficult to get your mother to eat properly and keep her weight on. If your mother is immobile, mine was, her muscle tone may well decline quickly. This disease is very difficult to fight at any age but is extremely difficult to fight an elderly age. One last thing. Get tested for the disease yourself. I have IPF as well, diagnosed, November 12, 2019. This disease can be familial, more so, than what the literature indicates, so have the CT scan done and find out if you’ve got the disease as well. Take, care and God Bless your mother. Ross.

[Ross Harris]

Hello Mel:

I’m sorry to learn of your diagnosis. Mine was November 12, 2019. My mother passed away on June 19, 2019, from IPF. Your experience with appetite and the metallic taste is consistent with my own experience. It’s vitally important that you maintain a healthy weight and a healthy level of physical fitness. I am on OFEV, which calls for two 150mg capsules daily. I usually eat one-half of a banana and then take the pill and wash it down with a full glass of water. After drinking the water, I eat the remainder of the banana. I try to get a thirty minute walk in each day but I am now finding that in order to continue the walk, I am going to need oxygen. I have a Pulse Oximeter and check my oxygen levels three or four times a day. I have some 15 lb weights that I use to maintain some muscle tone. This disease is a subtle killer and if you don’t fight back it destroys your body a day at a time. I watched IPF destroy my mother over several years and it was not something I would want to see anybody else go through. If you have brothers or sisters, see if you can talk them into getting tested. This disease seems to strike in family’s more than the medical literature indicates.

Ross

[Ross Harris]

? I’m okay! It’s not been completely a smooth ride, but I’m Okay. I would have preferred not to have the additional stress of COVID-19 but now that it’s here, I’m trying to deal with it in a reasonable and intelligent fashion. My mother died from IPF in June of 2019 so I have her illness and death as a ‘touchstone’ of what can be ahead with IPF and I’ve read enough about COVID-19 to see the similarities and the differences in both diseases. My wife and I completed our will several years ago and prepaid our cremation costs so we’ve eliminated that part of our worry. Everything else is in God’s hands, good or bad.

[Ross Harris]

My 90 year old mother passed away on June 19, 2019, from respiratory failure do to IPF. I had noticed difficulty in doing things that I could normally do with ease. Initially, I dismissed the problems as being allergy related. Finally, in the middle of September , 2019, two things happened that started me on the path to my IPF diagnosis. First, I developed a severe sinus infection that sent me to the doctor for treatment. I was prescribed antibiotics with dosages lasting for 7-8 days. I thought that after the infection went away there would be an end to the matter. Not so. I developed a dry cough afterwards that sent me back to the doctor and that’s when things really picked up momentum. Blood tests, 24 hour urine tests, more blood tests, and two scans were taken before the diagnosis of IPF (November 12, 2019). When I was told of the IPF my first words were “That’s what my mother died of”. I started my first dosage of OFEV on November 29, 2019. I was supposed to have my second appointment at the local lung institute yesterday, March 25, 2020, but was rescheduled to the middle of April because of the Coronavirus. Prior to my recent symptoms I was in very good health and worked out at the gym on the treadmill and weight machines. With my mother’s IPF illness and death, I’ve witnessed the devastation this illness can cause the human body, but I am determined to maintain the exercise routine as long as possible, just as soon as the Coronavirus restrictions are removed and the gym opens again.

[Ross Harris]

There are only two drugs approved for the treatment of IPF in the United States. One is Esbriet (pirfenidone) and the other is OFEV (nintedanib). Esbriet requires a dosage escalation over a couple of weeks before settling down to three doses a day. OFEV is two doses daily at the same time each day. Both drugs are very expensive. You might ask your doctor why he prescribes one drug over the other.

[Ross Harris]

@sarvpunj

Sarv:

I was diagnosed with IPF on November 12, 2019 and started on OFEV on November 29, 2019. My dosage has remained at 150 mg, thus far. Talk to your wife’s Pulmonologist to find out if there might be a drug sponsor program available for her.