Rene Hakkenberg

Thank you so much @christie-patient – you’re so kind and always encouraging of me, which I deeply appreciate!!! I’m excited to hear how the IPF/PF community responds to this collective effort. I’ll tag the other forum members who contributed many hours and lots of energy to the writing of this book, despite it being a very difficult time in their…[Read more]

@lnour, you are correct. I don’t think I was super clear in my post: I’m taking two other newly prescribed steroids via inhaler (new to me) due to worsening symptoms, but they’re not Pirfenidone. I referenced the article because it talked about the benefits of inhaled therapies, such as this new AP01 (inhaled Pirfenidone) but I am not taking…[Read more]

Love this reply @renehakkenberg, it made me smile… thanks for starting my day off this way! 🙂

I’d much rather your version of “white Christmas” than ours, because yours involves a beach and Canada’s is cold. That said, it was the most picturesque, classic Canadian Christmas we’ve had in years this year. The snow began falling Christmas Eve and…[Read more]

@renehakkenberg @charlene-marshall

Answer is coming, the computer ate my homework 🙂

For the record @mal-com and @renehakkenberg, I am so very jealous of your destinations!!! Surrounded by ocean and beauty, must just be amazing! 🙂

@renehakkenberg

Hey Rene,

Our friend @mal-com had a hard time getting this reply posted to you because of the silly forum issues! I said I’d post verbatim on his behalf while we work to get the issues fixed. Here is his reply to you:

“Hi ReneWhere about are you in this weird world, I’m in a little beachside village called Tomakin on the NSW…[Read more]

@renehakkenberg

Hi my friend, so nice to hear from you! I think of you often, and hope you’re doing as well as possible.

Thanks for the clarification re: EGCG + weight loss. I know it can be a side effect of the extract, but certainly is something that is caused by the unpleasant side effects of Esbriet and Ofev. I hope you’re tolerating Esbriet…[Read more]

This is a really good suggestion @renehakkenberg and a great way to compile some quantitative and qualitative data, I just may need to put my head together about how to do this. I may be able to create a shared spreadsheet for those who are taking EGCG and want to compile their results, so we can track it all in one spot. I’ll have to give this…[Read more]

Hi @renehakkenberg

So nice to hear from you on the forums again 🙂

I know you emailed to let me know you saw the thread about the EGCG extract, but if you need it for quick reference, it can be found here too :https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/

Like you and many other readers, I was surprised about the…[Read more]

Good question @cynthia-comery-ferguson, and thank you for replying @renehakkenberg!

I used to be a little more “lax” in cleaning my oxygen cannula, and I’d have no issue with wiping it down with a lysol or other type of antibacterial wipe… that was until my transplant coordinator freaked me out with how “combustable” our cannulas could be. This…[Read more]