[Penny Rylee]

I am a 76-year-old female who had to go on oxygen this last March. I live in California where the weather is pleasant, most of the time, and I have always loved to hike in the hills and work in the garden.

The company that supplies my oxygen is horrible!!! It has taken seven months and I am still trying to exercise and do my normal tasks and I am under oxygenated all the time. They talked me into this fill-it-yourself system that is useless. The canisters are so small I have to change them every 20 minutes, and that’s at level 6.

I am now trying to get the large canisters (E tanks, I think) but they will only give me one or two. I really need at least five because the respiratory therapist at Stanford said at level 8, the E tank will only last one-and-half or two hours. I would use that up in one hike.

I don’t know which is worse the IPF or the oxygen companies! They should be ashamed of themselves!!

If you don’t exercise as much as I do oxygen can be pretty simple: You have a concentrator at home, and you can get one of those portable concentrators which you have to pay for yourself, and even though mine says I’m at level 6, it’s really only giving you 3 Liters per minute. But that’s good for working in the garden and going shopping, etc.

Good luck and thank you for bringing up this topic.

P. Rylee

[Penny Rylee]

I believe the two-week study at UC Davis (in conjunction with UCSF) used the Teavigo Green Tea Extract from Healthy Origins. I got it through the internet and am taking four 150 mg daily as they did in the study.

I am doing a walk test and spirometry next week at the pulmonary lab and am excited to see if my lung function has improved.

I stated Esbriet six weeks ago and now have a horrible sun rash on hands, neck and lower legs. I have heard that this side effect might end within six months. I sure hope so. It’s had to climb hills (with the gym closed) with this creepy rash.

Good luck with the EGCG!

Penny Rylee

[Penny Rylee]

I just got the OK from my pulmonologist to take 600 mg of EGCG a day. He says it sounds interesting. I had sent him the article from our newsletter.

I might do a clinical trial at Stanford Medical School for EGCG that is the same product once the virus has calmed down.

This sounds exciting!

[Penny Rylee]

Thank you for your response to the length of time people can live with IPF.

You said your mom lived for ten years. Can you describe some of the things she did that allowed her to live that long?

Was she she on Esbriet or Ofev?

And you sound like you are doing well. What are some of the things you recommend doing to stay healthy?

I’m trying to do everything I can to fight this disease.

Thank you so much for your positive and hopeful responses you’ve made.

Penny Rylee