Terry thanks for the recommendation. I watched the movie today. It was good, love the Aussie accents lol. I have not been doing good. In my captivity ( AKA self isolation) I have been ordering bad food, baking with sugars etc. I have gained weight, and don’t feel as good as I should. I have to get back on board. I have started baking sour… Read more

My son told me that is China they were not allowed out without permission. They were allowed to go to grocery store every 3 days but only one at a time and the stores were monitored to not have crowds. They are lifted now, they can come and go as they like. He is still teaching online as schools not open yet. Here in Ontario Canada many… Read more

How is everyone doing with this? Me, not so good. I did not have any weight to loose but in the past 2 weeks I have been eating a lot of sugary treats and white flour and i have gained 3 pounds, now i need to loose weight as that put me in the over weight category. I really need to get on board. I have done intermittent fasting and low carb and… Read more

Hi Barry, thanks I am picking up tonic water today :). I have had PFTs a few times, the last time a decline was told my lungs are shrinking. Signs of restrictive lung disease they say.

I emailed the centre and told them waiting 4 months for a CT is torture, will see what they say.

Thanks everyone

Susan so glad appointment went well, we have enough anxiety in this life without doctors causing more.

I have so many cramps in my chest mostly. I talked to my doctor today and she had no suggestions. She did hear my cough though, i have 2 doctors in the last week hear my cough and say “that sounds horrible and like an ILD cough”. She gave… 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… 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… 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… 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… 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… 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.… 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… 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… 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… 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… Read more

I should have taken that advice too, my “feeling like I am coming down with something” did eventually turn into a full blown cold. So far, with the help of tylenol cold I am doing ok. I hoe you guys return to better health very soon. <i am just resting and watching team Canada in the world juniors gold medal hockey game. I feel fine as long as… Read more

Oh my goodness, i just watched the news and saw how bad the fires are in Australia. Malcolm I hope you are safe. It looks so bad for everyone but especially those with lung disease. Here is it mild, cloudy and dampish, not to bad for breathing. I coughed a lot outside but that is normal for me. I can’t imagine air filled with smoke. Do take care!

Charlene, so sorry to hear you are not feeling well. Please take good care of yourself.

Update on me, I never did get a cold, my sore throat cleared, so far so good, knock on wood. My good day was just that, a day. My sats have been quite low. Rest 92-95, slightest exertion it drops. New Year’s eve we went to friends house for dinner. A… Read more

Thank you that is great information. I came across this:

How to Get the Most Out of Your Doctor’s Visit

also with some excellent ideas.

Hi Charlene and Josie, I am wondering how the tests went and if it was a good thing. I have a methacholine challenge test booked for March. The respirologist ( Pulmonologist in the US) I saw told me she did not think the amount of fibrosis I have was the cause of my symptoms of cough and SOB. I don’t agree with her as I have tried Ventolin… Read more

Yes Charlene I look forward to it too. I may plague you with questions ;). My appointment is Jan 29 so just 4 more weeks.

Seems like I am like you Susan in that my sats go up and down and all over. Today I was eating and it went to 80% (good wave good reading on HR so accurate) I stopped and it went to 94. Most of my at rests are 93-95… Read more

Thank you for the great advice. I have been monitoring my sats for 5 days now, I was thinking for doing it for a week. I am surprised by some of the low lows however I now know it is not all “in my head” :).

Merry Christmas, happy holidays to everyone!

P.S. Charlene, yes lets have coffee in the new year!

I am still not great at these forums lol i answered you Susan under the feather pillows and duvets thread. I got mixed up haha.

Charlene you talk about fog brain, i have been getting that sometimes lately too, not to fun.

 

Thank you Susan, that is what i am doing now, when i am doing something and feel short of breath i stop and check sat. Often in the 80’s. My throat has been sore or dry for a few days but has not developed into a cold so fingers crossed that is all. i think i need to get a humidifier.

I have similar dogs, i have a yorki-poo so like your 2 dogs combined lol plus i have a shi tzu. We live on the 7th floor of an apartment building so i have to take them out a few times a day and my husband does the evenings, I could not cope without them, glad they don’t shed. I try to keep the exposures down, especially since i have also… Read more

HI Susan and Charlene,

I got my sat monitor yesterday.  i have been testing it since, a bit obsessively. It was not an expensive unit and it is really picky about movement so hard to get accurate readings with activity which is what i really want to know so i have played around. Results are at rest 94-95% occasionally higher. It actually goes… Read more

Thanks Susan. I am not a hypochondriac so I ordered an oximeter from Amazon. Will be here Thursday. I have a had a tough couple of days, curious to see what my saturations are doing.

Hi Charlene

I was thinking that when I go to the ILD clinic in Toronto next month they would do a six minute walk test???? Should i buy an oximeter on amazon and do as Susan did charting sats with different activities? Yesterday i really “over did it”. I know you have talked about this before, my family does not get that i get… Read more

1. Mal, so good to hear the weather is better. I have no idea what that smoke would be like, sounds dreadful. We are cold and damp here. One thing about the cold is I automatically want to walk faster but then I get short of breath, mouth breath, dry out and cough more. I do use a scarf, it helps. Met with my PT and she was not to happy that…

Read more

Hi Susan, I have been thinking of you wondering how you are doing, i can’t hold the balls up either.

Charlene, i am a bad patient, she told me to get one and bring it to her, i am not to be using it before meeting with her on Wednesday but i have been “playing with it”. Good call, i will stop and not use it until she reviews it with me.… Read more

Hello everyone, I have been using the extreme cold type breathing as an explanation as to how my lungs feel. Let me explain. I say to my friends and family “you know how it feels when you take a deep breath in the extreme cold? that burning feeling? well that is how I feel with every deep breath i take”. This seems to really help them… Read more

I came across this post and it was of interest to me. I see it is old so not sure if my post will be seen. I too was given Solbutimol (ventolin) with an aerochamber and flovent (mild steriod) when i was first dx. Ventolin for rescue. I never used the flovent for more than 2 days, perhaps i should have. The ventolin does nothing really except… Read more

Charlene those pictures look awesome, so glad you got to swim with the dolphins – yay. It is humid here in Southern Ontario even though it is fall so good you are there and not here :).

Charlene, have fun, relax and enjoy. Hand wash hand wash hand wash. Sanitizer is good but not near as good as washing, lots of friction, rub fingers and hands together good.

Enjoy listening to the waves, feeling the breeze and tasting the food!

Nan

PS, I have a respirologist appointment on Monday, locally.

When i was going through breast cancer, the team advised me to bring someone to appointments so i always did, hubby, son or friend. When my husband comes with me to GP appointments they have been shocked and asked why he was there lol. It was awkward, don’t want it to look like he is a control freak hahaha. Sometimes i prefer to be alone… Read more

I have burning pain in my lung when I take a deep breath. It really hurts, so much that I avoid at all costs deep breathing. My ribs hurt all the time   and worse  the with all the coughing which is why I had a CT scan that lead to my diagnosis. I read somewhere, on this site I think, about someone else who described the breathing pain as… Read more

Good question, i am interested too. Also about humidifiers?

Tonight i made the mistake of eating too much ( if you saw it you would not think it was a lot) and had a glass of wine and i felt so full and SOB. Ugh i need to be diligent in having small meals. I think you are right Mark, alcohol, even in small amounts seems to affect my breathing. Thanks for the advice and like you said Charlene I need to… Read more

Wow i have learned so much on this thread. My DLCO is 62%, my first PFTs, i did not even know what that meant. It does say on the report “volumes treading towards restriction that would be in keeping with interstitial lung disease, mildly impaired diffusion”. I dont understand any of the results on the PFTs but my saturation was good.… Read more