Charlene Marshall

Woah, that is awesome @lorraine and as you say, what great exercise for your lungs! I’m really curious to hear how the learning goes, good for you for taking on this new challenge. I also have longed to play an instrument – I tried guitar last year and it was very hard for me but you’ve inspired me to try again I think. Looking forward to hearing…[Read more]

Hi @csbarm / Christine,

Thank you so much for sharing this story! I’m not sure what it is with me, but I absolutely love reading stories of random kindness – always have – because it lifts my spirits a bit when dealing with this awful disease or all the negative news stories on TV. Sounds like Maria is a beautiful person, and how nice of her to…[Read more]

That is a great idea Zach, thanks for sharing! When the situation is flipped as though you’re protecting the person from getting sick, I can imagine the response is more appreciation. Great idea!
Charlene.

Hi @bob-humphreys,

Thank you for writing and sharing a bit more about what you can/cannot tolerate. The trial and error phase is all we sometimes have to figure out how to manage this disease, isn’t it? Sure can be tiring but goodluck in the process of determining what works for you and makes you feel okay when eating it. I know @mark-koziol ate…[Read more]

Thank you all ( @mikepapa, @doug-batten, @bobo) thanks for sharing your experiences since I replied to Bob but didn’t have much to contribute or say. Grateful for everyone’s kindness in telling their story and sharing their experiences in this group.

Kind regards,
Charlene.

Hi Sam,

Oh, I’ve heard many good things about Women’s College Hospital! I’ve had friends treated there before, not for interstitial lung diseases, but I know your pulmonologist would be well connected and skilled just being part of the UHN. I don’t live in Toronto, but about 2 hours from it yes 🙂

Please do keep us posted on the progress you…[Read more]

Hi @tammy-ansley,

Thanks for getting in touch with this group, I’m glad you found us! Support groups can be really beneficial so I’m glad you’re looking to find one and hopefully your search can be successful. I agree with you when you say how lonely this disease can be due to the lack of energy. Just a quick thought – have you looked at (or…[Read more]

Hi John,

So nice to hear from you – thanks for your reply regarding this topic! I was hopeful that others could relate, and that I just wasn’t obsessively aware or cautious of germs. The very act of avoiding hand shakes feels strange, but I really don’t want to relive the experience of an exacerbation! If I have to shake hands, I’m like you and…[Read more]

Hi Bob ( @bob-humphreys )

Thanks for starting this topic thread, I suspect it is one that others on Esbriet can relate to. I’ve heard of this ‘metallic’ taste you describe actually, although I am on Ofev as opposed to Esbriet. Are you able to taste one ‘type’ of food more than another, ie. sweet vs savory? I truly am just curious as I can’t…[Read more]

Hi Sam ( @sambilotta ),

So nice to hear from you – hello to a fellow Canadian! I have friends up Barrie way actually. Are any of your specialists out of TGH? I haven’t yet investigated laser therapy providers in Toronto but I’m glad @drandyhall was able to provide you with some contacts! Do you mind reporting back and letting me know what you…[Read more]

Sending you lots of love and best wishes @marshaharris! It is always so nice to hear from you, and you are so eloquent in your writing and kind words that it just brightens my day 🙂 Goodluck with your chat with Dr. Cebek on the 15th, I’m curious to hear what he says. Do you mind reporting back?

Best wishes!
Charlene.

Hi Barbara,

I haven’t read the literature behind the flash briefing listed above, but if you click the link you’ll be able to listen to a brief summary about it. It sounds like the Rosavin may be  helpful in reducing PF-related scarring and inflammation. Hopefully so – I plan on doing a bit more research around this myself, and if you find…[Read more]

Hi Michael,

Okay thanks, I’m glad to hear that. 🙂
Cheers,
Charlene.

Good question Michael, I’m not sure the answer though… I haven’t read all the studies used to compile this flash briefing as that is usually the role of our scientific writers (I think :)). I can to pass on your question to them and see if they noted that in their research, if you want? I’m not sure if they will have a response but perhaps.

Let…[Read more]

I agree Lynn! I am certain that research is getting very close in helping us live longer with this disease but the day that a cure (or life-extending therapy) is found, can’t come soon enough! May we all be around to celebrate that day when it happens. Wishing you all the best!
Charlene.

Hi Suzanne,

Thanks so much for contributing to this topic thread and letting us know a bit more about your experiences with this disease. I have heard good things about National Jewish Health, so I am glad that you are happy with your care there.

I’m really glad to hear you are tolerating the Esbriet okay, that is wonderful to hear as I know so…[Read more]