Marianne

I know it is dangerous getting down to such low numbers, happens for no apparent reason , even just getting into bed can have me at 79 so I just have to get on with it, never adjust my ambulatory oxygen, that was set by the doctor, but do turn up and back down again the house oxy, like the other day, got the house covered in smoke from neighbour…[Read more]

Hi Army Pete, It has taken a LOT of hard work, pain and panic and 2 years to be able to do that, and now only on the flat, depending on the weather too, has to be warm and sunny, not too dry, lot of things but there is no way I want to lose any of this ability, I do have to stop fairly often to get my sats back up can suddenly drop to 79 or…[Read more]

Hi Pete,
I’m sorry that you have such a bad experience with the medication. But I do agree with you that each of us have to make their own choice of what is most important.
As for me, I’m 84 years old & intent to live a lot longer still despite the IPF issues.
For what it’s worth, I control the side effects of OFEV by taking Chinese Herbs from the…[Read more]

Good Morning @peter,

Thank you so much for the warm Christmas wishes – sending them right back to you. Wishing you nothing but the very best for 2020 🙂

As for your weight loss question, yes, I would say it is something very common with IPF patients. Of course I am no physician, but there are a couple of things I’ve been told about weight loss…[Read more]

So sorry to hear this @peter! Getting up/down from bed or a chair to standing can be tough and it is unfortunately something we all need to do, so I can imagine the switch is frustrating. Glad to hear you’re doing okay otherwise though. Hang in there! Happy holidays to you and your family.
Charlene.

Back to you @peter – nice to hear from you! I am just slowly emerging from a terrible flu virus so I am a bit behind on replying. Stay well 🙂
Charlene.

Yes, she is. I have a handheld spirometer I use at home and for some reason I call her names when she tells me I have to repeat. She is a computer.

Hello Pete, sorry about the delay in response. You may be experiencing some sort of infection. I would notify your doctor of your current symptoms. I hate the blow test as well. I go next week for mine. I have my quarterly transplant appt next week and this test still gives me anxiety. Do your best on the test but also take your time. Don’t let…[Read more]