Thanks for your reply Sheila and Charlene. I’m sorry to hear you are having some struggles currently Sheila. Did your doctor feel that your fibrosis had anything to do with your TB? I am also finding this cold weather to be really challenging here in Canada; these temperatures make breathing very difficult outside, and I get a cough and a… Read more

I am wondering if anyone has experienced sudden onset hoarseness when going out in the cold. I started getting a raspy voice in the fall, which they attributed to GERD. I’ve been on PPIs which seem to have really improved the acid reflux symptoms, but the voice problem has been getting much worse, and now very noticeably seems to be triggered… Read more

Hi Charlene,

Thanks for your reply. I am waiting to get the date for my HRCT but they said it would be pretty soon, so I’m assuming sometime in the next few weeks. I’m quite anxious to get a more definitive answer, as to date, all I have is the two x-rays that apparently showed the upper lobe fibrosis so do not have a proper diagnosis yet. I… Read more

Hi Charlene,

My pulmonologist has ordered this test too, but in my case it’s to figure out if the shortness of breath might have another cause than the fibrosis. He said it was to rule out occult asthma. I haven’t had the test yet, but will let you know what happens when I do.

Interested to hear what you find too.

Josie

Hello

I hope folks are having a good day. I was wondering if anyone had a similar experience to what I’m currently navigating in terms of the diagnosis journey. They found upper lobe predominant fibrosis on two x-rays, and am now being scheduled for a CT scan and various other tests to confirm and look deeper. My Pulmonary Function tests… Read more

Hi Rene,

Thank you – I think, based on your advice, that I wasn’t using the wedge properly so will adjust it tonight. Yes, I think I need to improve overall conditioning, and now am very motivated to do so! (I’m 54 and really not interested in cutting my life short!!). That’s awesome that you’re connected to an IPF researcher and that there… Read more

Good morning Rene and Charlene,

Thank you for all the great advice. I bought a wedge pillow for sleeping, which seems to help, and I bought an oximeter. So far my readings seem quite good, except my pulse is always a bit high. I’ve started on a daily regimen of strength training and aerobics, and am being careful to watch for 02 saturation… Read more

Thank you so much Rene, Ray and Charlene for all the information. I hope you all had a lovely Christmas and are enjoying a relaxing Boxing day. Ray and Rene, I’m sorry to hear that efforts to alleviate the GERD have not been successful, and that surgery is not necessarily going to fix the problem. I’ve started sleeping a bit more upright,… Read more

Hello

Interested to see this thread, as I was recently diagnosed with both PF and with GERD. I’m now being referred for a gastroscopy (after the ENT found acid damage to my vocal cords) so that they can take a look at my oesophagus, stomach and small intestine.  It seems like there is an increasing amount of literature discussing… Read more