Thom

Hi @kwitherspoon64

So sorry to hear of this new dental diagnosis, Kathy. That must be frustrating while also trying to accept/digest a final diagnosis of IPF too. I hope you’re being gentle with yourself during this time, and are able to get the support you deserve. Feel free to write this group anytime – I may be bias, but the people on here are…[Read more]

@Thom and @charlene-marshall!!!

Greetings both.

All things considered, I am doing well and hope the same is the case on your ends.

NYC flattened the COVID-19 curve and altho some things are still not opened, I have been spending a lot of time outside with friends and family. In fact, I just returned from Lake George where I went for a couple of…[Read more]

Hi @thom : I’d never laugh, friends don’t do that 🙂

I don’t see a reply to my note above (on Aug 16th) but absolutely no rush. I hope you’re doing well!
Take care,
Char.

Hi @thom

So nice to hear from you and glad you’re doing ok post tropical storm! 8 days without power in this heat would be have been soooo difficult. Has everything been fully restored now? I’m currently preparing my concentrator batteries as we have a storm headed our way this afternoon. I don’t imagine longterm power outages, but want to be…[Read more]

Hi @thom

I will respond to the remainder of your post momentarily, but no, the forum is *NOT* dying. I’m not sure what Bob meant by that, I will follow up with him.

Char.

That is great to hear your doc could do that @thom – Im sure it was so greatly appreciated 🙂
Char.

Hi @thom,

What a terrible experience you had with this first physician – so sorry that doctor’s can be that incompetent and blunt, in terms of your diagnosis. I am so glad you sought out a second opinion, and are likely receiving much, much better care in the NYC/Boston areas. A lot of great specialists in that area. Good for you for going…[Read more]

Hi @thom ,

I completely agree with you, though it is so unfortunate how many people are unfamiliar with IPF despite its deaths being comparable to breast cancer every year. It breaks my heart when patients endure difficult conversations with their physicians who have also never heard of IPF. It just seems like an added level of cruelty if I am…[Read more]

@nimrod

That is great to hear Karen, thank you for sharing! I’m sure it’ll help others like @thom who is seeking information on the laser therapy. Thank you for letting us know.
Char

Thanks so much for writing back to us @caneelbay1 – it is so nice to hear from you John! Glad you continue to do well, and I know @thom will be happy to hear from you as well. 🙂

I will keep my fingers crossed that you remain stable as well!
Charlene.

@thom, I have a hernia also & it’s very hindering to me, it’s very large & now wonder if it has something to do with IP  also same thing with me … it’s hard to be really comfortable but I have a great Dr’s. & hospitals too.

I have checked also about the sweating  as I do have issues with that..ok I’ll write  more later

sta

Hi @thom:

I appreciated reading your post, specifically regarding Ofev and the possibility of a heart attack as a side effect.

I was diagnosed in 2016 with ILD/PF. My doctor has not started me on medication. I now started to see a second doctor, who changed the diagnosis to IPF.  I go for my follow-up appointment in May.

Also, in 2016, it was…[Read more]

Hi Andy,

Great response for Thom, thanks for replying to him and I hope it helps a bit @thom. I’m not surprised about your physician’s reaction to laser therapy and almost seeming “annoyed” that it was brought up. This is very unfortunate, but I also understand the scope of what they’re working in (not to mention the amount of work Doctor’s have…[Read more]

Definitely keeping my fingers crossed that it remains this way for you @thom! I am lucky to report that I didn’t have a lot of trouble when starting this drug either, just occasional discomfort but not even enough for me to know whether it was the Ofev or something I’d eaten – that is how sporadic it is. Will be thinking of you and hoping you…[Read more]