Nan

I too have not had a full diagnosis yet, well I have but they now are not sure lol so I wait and have tests. I was off for 3 weeks from work because of the SOB. I was bored. I had a meeting with HR, union and management. They were wonderful and we came up with a plan for me and for them as I can still be productive. They gave me a desk job, a…[Read more]

There seems to be different opinions in the medical field. I watched the videos from the PFF sumit and they talked about not letting sats and HR fluctuate too much as it can lead to PAH. Last week I had my first appointment at a Large centre ILD clinic. Upon going there all i knew was I had radiation induced PF but mild yet I have a lot of…[Read more]

My son and daughter in law are not coming to visit. She is a nurse in China and all vacations for nurses and doctors cancelled. They now have a few cases where they life in the far north. Everyone is.wearimg masks now even here in Waterloo.

Hi Charlene, when I was in China in 2018 so many people there were wearing masks, it is a fashion statement. You can go into stores and buy all kinds of colours and designs, I can get my son to bring you some :). He is coming to visit but he is no where near the area with the infection. My son and his wife live in the far north. They will be going…[Read more]

I am reading this as I swallow my last bite of a cinnamon bun. OK I am in, the rest of the buns have been thrown in the freezer for company.

Hi Barry, sorry to hear of your challenges with pulmologists and clinics, I am curious to know your story if you are willing to share it. I have not tried tonic water but i will, thank you.

Barry, i dont have GERD that I know of, definitely seems skeletal just not sure why my muscles like to spasm lol. Mustard eh, interesting never heard that…[Read more]

Susan, that sucks and I feel for you, glad you at least have this online community to connect with. Seems me and you have a lot in common. I had a GP before, for 25 years, he was such a grump. He told me to come back in 2 weeks, then I did and he then asks why I am bothering him, ugh. We don’t have much choice in our docs here, I was able to…[Read more]

I have read on a few websites under “symptoms of PF” night sweats. Not all as i did not see it till recently. Interesting!

wow that is terrible. I had an oncologist d/c me because I refused to continue tamoxifen d/t the side effects and no quality of life. My family doctor was pretty discussed with the oncologist. Terrible how they make us feel eh?

Hi Susan, I was thinking of you at 3 a.m. when i woke up with muscle cramps in my chest. They use to think that cramps/spasms/Charlie horses where because of dehydration, they no longer think that. They really don’t know the cause but magnesium has been implicated. The problem with magnesium is we don’t absorb it well that is why it is used as a…[Read more]

Susan i can so relate, i get them too. Any twist at all and bang on comes a cramp. I have some stretches my PT gave me to do which really help but while driving hard to do and I have had them while driving. I took take magnesium, maybe it helps, not really sure. No one I have asked knows the answer so maybe here we will get more suggestions. All…[Read more]

I too life far from family and we are always travelling there, 5 hour drive and I am sick of it. They rarely come here. I will keep doing it as I can because my mom is 88 and that well so she cant travel but i do hate doing it. My husbands family always expect me to do everything, but no more!! i hope I can stick to that :). You are right Richard…[Read more]

Thanks for this Mark, interesting. I just got a new humidifier, hope it helps me. So far it has not been to cold and dry this year, but it is coming!

I am awake every night every one to two hours with night sweats. I thought is was menopause. It has been going on for 3.5 years. I have not had a good night sleep in the time. When are they going to stop? if it is compounded by PF i may never get away from it? Not a pleasant thought. I feel for you. It is January and i run the air conditioning in…[Read more]

I can relate, m oxygen sats are lower while eating and even after. Just resting on the couch after a meal it drops. I try to eat small meals which helps but i want to eat more, its a conundrum.  I do feel tired after evening meal, very tired, no so much after lunch but it does take energy to eat and to digest so makes sense. All the best!

Hi Charlene, I have decided that for the next 2 weeks at least, I am not going to work. I have reduced a few duties at work recently but I have a very stressful, demanding job. My sats are all over the place from 70s with activity 90s at rest. My resting heart rate is climbing at quite high. I watched a video from the OFF summit yesterday and a…[Read more]

This is a thought provoking conversation. Some many great ideas and thoughts. I agree that you need to take the time over the year to decide. I think scaling way back can be therapeutic in many ways. Totally giving up though might be depressing. As a western society we sure have put a lot of pressure on ourselves and others on what to expect at…[Read more]