[Carol]

I’m happy with having the watch. It only does readings on its own during the night. Sometimes more than other times. Maybe it’s because I toss and turn a bit. Mine drops during the night sometimes from 87-96. It’s usually just one drop to 87 and the rest of the readings are in the 90’s. Wish I could get that up a little higher but maybe that’s not possible. One day at a time I guess!

[Carol]

I have an Apple Watch 10 series. I have Raynauds so they can’t get a reading with the oximeter that clips on a finger. They use one that straps on my forehead sometimes and I’ve checked with my Apple Watch at the same time and it reads very close to the same +/- 1% or so. I’m so glad I have it now. I keep it on all night and it randomly takes readings during the night so I can keep track.

[Carol]

I am a patient at Mayo in Rochester MN. I had a couple surgeries done there – shoulder replacement and surgery on my elbow. I was seeing a different pulmonologist in another clinic but couldn’t get a response from him on questions I asked so since I was already seeing doctors at Mayo I had my rheumatologist refer me there. They are located on the opposite side of the state so it’s a bit of a drive but I find it is well worth it. I’ve seen this pulmonologist for almost a year now. So far I am satisfied!

Carol

[Carol]

@Nate

Thanks for replying. I’m hoping the enzymes will help. I hope to hear from some others also.

Carol

[Carol]

It’s all really disappointing that these companies don’t just come out and say exactly what their machine puts out in liters! I was hoping I could get one that I could carry so I could go for walks without having to wheel something around since I live in the country with gravel roads and driveway. I’m using 1.5 liters now. I just got the machine last Friday so it’s all kind of new to me. I was prescribed for overnight use but am finding it helpful during the day also.

I guess I’ll find out next Monday if I can get prescribed for daytime use also. The home medical place here always says the carry type are backordered and can’t get them.

Carol

[Carol]

I too am needing a POC. I just got a concentrator for home use but need to do the 6 minute walk for my primary doctor before I can get a prescription for the POC. I can’t get in there for another week. I’m also looking at getting the Inogen. I’m on 1.5 liters right now at home but if I could get the Inogen 5 and it goes to 3 liters that would keep me going until I need a higher dose. I guess it depends on whether I need continuous flow or I can get by with the pulse type. Were you able to go through a home medical supply store or did you go directly through Inogen?

Thanks

Carol

[Carol]

Just wondering what tyvago is? I’m looking forward to something new. Hope one of these new drugs work well.

[Carol]

Hi. I am thinking of starting Ofev in a few months. I just saw my pulmonologist a couple weeks ago in Rochester. My PFT’s have been fairly stable. I haven’t taken anything like CellCept. I have RA with schleroderma causing the lung issues. I am wondering how you manage the side effects of Ofev? I’m taking Actemra for my RA and there are indications that it also helps with lung issues. I just saw the article on this site about berberine. I decided to buy some and see if it will help. I see my pulmonologist in 6 months so we’ll see! Any suggestions you have would be appreciated!

Carol

[Carol]

@Lee

I just received your book yesterday and going through some of the nutrition section you mention how good beets are. Just wondering what you take. I’ve tried the SuperBeets powder but miss it a few times and now it’s hard as a rock! It has to be used in a certain amount of time or it gets out of condition. If I used it every day it wouldn’t be a problem. Do you buy an organic juice or do you juice your own.

I’m anxious to read more of your book. Thanks for sharing your story. My IPF is not severe but I have had to quit my job. I’m not on oxygen yet and would like not to have to use it for a long while. I’ve had two knees replaced in the last two years which were successful so now I’m just trying to get reconditioned. After the last surgery it was going great until I got pneumonia and that added to my lung disease. I couldn’t walk 20 steps without being out of breath. It’s much better now but still not great. Anyway, thanks for everything!

Carol

[Carol]

Hi Polly, I actually just got the book yesterday. Sounds like some good information there!

[Carol]

Hi Nancy, I actually just got the book A Matter of Breath today. My husband is reading through some of it. It seems pretty interesting. I hope I can get some insights into how to get a handle on this. I just wish doctors would be more open to natural remedies. I’m watching this forum pretty closely. Let’s hope we can get some answers.

[Carol]

Hi, thanks for your response. The Sjögren’s and Raynauds are not fun. With your Sjögren’s do you have problems with your mouth as far as being really sore and can’t eat any acidic food ? I went to an oral surgeon this morning and he prescribed some oral gel called lydex or something like that. I’ll pick that up tomorrow and see how that works. I have meds that I take that lower my immune system so I don’t want to have a biopsy because it takes forever for me to heal. I might wait to talk to my pulmonologist in December and ask about the enzymes. I’ll keep you posted to see how it works.

[Carol]

@HughL

I’m sorry for your struggle. My lung issues aren’t extreme but I’m worried about the future. I’m debating on the enzymes, wondering if I should wait until I see my pulmonologist.

It’s so hard to know what to do sometimes. Medical doctors don’t put much hope in natural remedies. I guess we just have to hope for the best and do what we can for comfort.

I’m going to pray for everyone on this site. It’s really a devastating disease.

Thanks for your sharing your story.

Carol

[Carol]

Thank you so much for your helpful response. I live in the country so not much flat paved areas to walk on. I do think walking is the best. 10 minutes is the limit for me so far. I bought a NuStep machine for home and I try to do 30 minutes every day.

I see my pulmonologist in December at Mayo and will ask more about Ofev and CellCept. I’ve had interstitial lung disease for a few years but this year is the first time they have referred to it as IPF. I don’t know why it wasn’t pursued by my doctors before this. Anyway it is what it is.

I too, try to stay focused on my spiritual life and what really matters. I have a really wonderful husband who is a great blessing! God has been good in all things.

Thanks again! Good luck with your journey!

Carol