Charlene Marshall

Thanks for breaking down the commonly-used acronyms Terry! I know this will be really helpful for folks new t the forum, or even those pondering our regular use of them. Appreciate your sharing about where you are in relation to these measurements/tests as well. 🙂

Take care,
Charlene.

Good Morning Luciane,

Thanks so much for sharing your thoughts on this post. It sure is a difficult one, isn’t it? So much so that I had a hard time deciding whether or not I should even write it due to the amount of feelings I had associated with this topic.

Your son is very close to my age, I am 31 – so sorry to hear of his IPF diagnosis! He…[Read more]

Hi Linda,

Never apologize for getting off topic, some of the best conversations had on the forum are because some of us went off topic 🙂

I do love to travel, and I hate to admit this but it is getting harder. Not necessarily because of my oxygen requirements – I usually book an airline where I can bring my portable oxygen concentrator (POC) on…[Read more]

Hi Linda,

Thanks for your reply. I completely agree re: reading the experience(s) of those on this website who have lived 10+ years with IPF. One tidbit of information I learned recently as well, which was welcomed in my mind is the news that the 3-5 year prognosis for IPF is actually outdated. That was one of the first things I came across in…[Read more]

Oh my gosh, that is awful! I am going to look up that news now, how terrible for the people living there who are affected. Will sure be sending prayers their way, very sad.

Woah Steve, is everyone okay? I didn’t hear about that but sure hope everyone survived an earthquake of that magnitude! I bet you are counting down the days until you arrive, 1 month will hopefully go quickly 🙂
Charlene.

Wonderful reply Eileen, and thank you for sharing your thoughts Linda ( @swanlw45 ). I completely respect your decision about end-of-life care (ie. ETT tube, etc) and no transplant. We certainly need to be comfortable with our decision, and it sounds like you’ve given it a lot of thought. I hope you remain at stage 1 for a long time and that these…[Read more]

Hi Steve,

Oh that sounds lovely, I am so glad you’ll be back with your wife soon! Enjoy all of your travels together, I’m going to have to look some of those places up so I can visualize where you’ll be. I can only imagine that you’re counting down the days, how many left? 🙂

Take care,
Charlene.

Hi Eileen,

Thank you so much for writing and getting in touch about this topic – it is an interesting one isn’t it? The young person I was talking about in this post actually was listed late last week and received her 3rd pair of lungs on the weekend, isn’t that wild? I guess it means they were a perfect match for her. I am happy for her of…[Read more]

Hi Steve,

Nice to hear from you — it’s never a matter of you bugging me! I just may take longer to reply, that  is all 😉

Makes sense re: waiting to see how the flight goes without 02 before deciding whether or not to come back to the US. Will your wife come with you if that is the case?

Interesting you should say that about the irritation, I…[Read more]

Hi Katie,

Thanks for writing, it is nice to hear from you!
Yes, I agree that an e-reader would come in handy for travelling. I suppose if I ever try to go this route, I’ll use my iPad mini which is the same size as an e-reader and you can adjust the backlight using a few different apps. Something to keep in mind when I go to Hawaii maybe as it’ll…[Read more]

Yes please do call Sue, it is really important.
Hang in there!
Charlene.

Hi Sue,

I’m no physician of course, but I suspect you may need supplemental oxygen as well. Especially if you tell them your sats ran down to 79, even just temporarily as this is very low. I’d encourage you to call that number and explain the situation to them, see what they say? I really wouldn’t wait until August…

Charlene .

Hi Susan,

Do you have supplemental oxygen? If not, yes, absolutely I’d request your appointment sooner and get an oxygen tank/portable oxygen concentrator. I know this is hard news to hear, I didn’t want to get my oxygen at all but I felt so much better when I started using it. If your sats are going down to 79 (even if they do recover quickly)…[Read more]