[Nan]

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 dough bread, I hope that is ok to eat, any idea? I heard it is healthy. My recent HRCT says I likely have hypersensitivity pneumonitis so I want to stay as healthy as I can.

[Nan]

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 many things are closed but no lockdown just suggestion to not go out. The panic buying is insane, first of all people are going in crowds and stripping self the selfish butts!!! I have been ordering online and doing pickup as delivery takes 3-5 days. Many items don’t come as sold out meanwhile there is no need for this. In China they never ran out or had empty shelves for food. In Italy I saw on people talking on the news that they can get groceries no problem> I have heard of some rationing but that was just one person so who knows.  I am working from home and walk my dogs 3 x a day and I have to do that for health but also I live in an apartment and they need to do their business :).  Me and my lungs are doing fine and praying my HRCT next week does not get cancelled!

Susan, be safe and stay in the country, Mal enjoy the sunshine and swimming, Charlene so glad you go to go to California, everyone take care of those lungs!

Love this community 🙂

[Nan]

We are seeing on the news people around the world wearing masks. My son in China tells me that if you go out without one they tell you to put one on. Here were are getting mixed messages about to wear or not to wear the mask even from my employer, the ministry of health. Yesterday I went to get dog food. The store is in a strip mall with a grocery store and there we tons of people coming and in out and I saw no masked. I wore one into the store, there was only one other person it there. The cashier asked me why I had a mask on. I told her I had a lung disease that makes me vulnerable. After I left I thought it odd that she was doing nothing to protect herself, no gloves, no gown and touching the debit machine. I felt extremely awkward. I plan to stay home as much as possible. I told my manager I am working from home and they are good with that. Stay home people and stay safe.

[Nan]

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 i have done vegan. Both times I lost weight and have kept 40 of that 50 pounds off. I understand some people don’t want to give up things they love, i don’t want to either, but I can’t have it everyday. I just feel so much better when i don’t have sugar in my body. I don’t like the bloated feeling i get when i don’t eat right. I also breath better when i feel “lighter”. It is a new week so i will start over, wish me luck!

[Nan]

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

[Nan]

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 me some hydromorph to take when it is really bad. I am going to try to get CT date moved up.

I have not tried tonic water, i must do this. I will get some tomorrow, i dont want the sugar though, can you get it without?

Mark i agree, damp weather – ugh that really makes me cough.

 

[Nan]

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 symptoms. First I had PFTs which showed a decline in lung function but remains in the mild disease state. Then the first doctor I saw asked me a lot of questions, examined my old CT (from April 2019 before I had symptoms other that occasional cough). He listened to my chest and stated I had crackles. He told us he thought I had IPF, in both lungs, likely brought on by the radiation. He did state it was mild but that the CT was old and very poor quality. He then left to go consult with the department head. The head guy came in and said “I am not convinced” he said that the fibrosis is so minor that it should not cause symptoms. He also said the crackles (Velcro sound) were very few. He states he is perplexed. I told him about the sat fluctuations, he told me to throw my monitor away, he does not believe in home monitoring. Rest when you get SOB he said. He then said PAH is rare even  people with IPF rarely get it so it is not a concern. He told me so many things that were the opposite of what i have heard before, even from his fellow only minutes before. He said maybe that has caused me to have some anxiety ( ugh, I don’t). Anyway the CT was old and bad quality and not a high resolution so he said he  is scraping everything and starting over, so i have no diagnosis at this time. He did a ton of blood work which definitely showed hypoxic lung disease but I have not heard what they plan to do about it. When I called to clinic to see if he saw the results they said no and he is gone on vacation lol. I said well have someone have a look. What a roller coaster ride. One good thing is i feel better mentally in that even though i get SOB easy i am not as worried about it, i just stop and rest. I have not checked my sat in a 4 days :).  So for the long story.

[Nan]

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.

[Nan]

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 through fever scans at the airports as they come here and are aware to not come if not feeling well at all. I am sorry about your lung function loss 🙁 damn disease!!

Take care\Nan

[Nan]

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.

[Nan]

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 one, but hey if it works.

Hi Karen, thanks for the suggestion. for my leg cramps I have to stretch it out and walk, blankets make it worse for me.

Judy, Susan – we are not alone some how that helps a lot. We seem to have good company here, thanks everyone!

Counter stretching works for the spasm just wish i could prevent them 🙂

[Nan]

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 change docs because I moved, only 15 minutes from where I was living but in a different county and I was able to use that as a reason and I did get a new GP and she seems very good.

[Nan]

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

[Nan]

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?

[Nan]

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 laxative, milk of magnesium, mag cit rate for bowel prep etc. There are some preparations that are better absorbed such as pico inonic.   We can also absorb it through skin, Epsom salts, magnesium creams they are pretty good. I use a magnesium filter on my water jug (BWT) and I think it helps as i have much less cramps in my feet and legs. However I still battle them in my chest. 5 or so just yesterday. Only on right side, front and back, same side i have breast cancer and radiation and the most lung damage so i believe they are related.  I have experiences with docs that are like that too, not fun for sure.

All the best, Nan

[Nan]

@reglois

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 the best.

Nan

[Nan]

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 the big deal made of the holiday just goes way to far.

[Nan]

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!

[Nan]

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 the freezing winter at night.

[Nan]

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!

[Nan]

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 panel of docs was saying how dangerous constant fluctuations in sat and high resting heart rate are. Increase risk of PAH. This brought a big reality to me and I decided at least until seen at ILD clinic and get oxygen I am taking time off. This has been a hard decision but I feel at peace with it.

[Nan]

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 Christmas time. I see articles telling us what is the proper etiquette, what gifts to give etc and it is overwhelming. I have scaled back and will continue to do so. I want to focus my energy and time on my grandson. He was just 9 months this year but it was still mostly about him :).  However I did the family meal this year for 11 and it was too much, even though I had help, next year, no not doing it. A quiet special day with hubby sounds wonderful!

Charlene, glad you are on the mend, I have been worried about you.

[Nan]

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 I am at rest. Get the rest you need, that is very important.

Mal, so glad you are in a safe place, where you can breathe now. You are in my thoughts and prayers. Please take care and keep us posted.

[Nan]

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!