[Gina Myhill-Jones]

Right now my biggest issue is wildfire smoke. Spending a fair bit of time indoors! I also have to limit “ city” time as the exhaust is a real trigger for me.
I guess my point is that the real problem isn’t always the little one you see first. There are so many environmental and employment risks that get no press that we don’t see those.
Smoking/vaping won’t help lol, but the real boogeyman is having a giggle.

[Gina Myhill-Jones]

Hi !
Are you in the USA?. I ask because here in Canada testing is easy to access and free. I have never waited more than 3 weeks for a high res CT, and even with Covid cases still clogging our lung centres my pulmonologist is available for calls if things get worse.
My diagnosis took some time as we ruled out possibilities but things have really improved since.
Self advocacy and determination help too.
Here’s hoping you get answers soon…. Peace of mind is hard enough to come by these days without uncertainty of our health.
We’ve all gone through the rigours of the diagnosis process and I wish you all the best while you navigate that course.

[Gina Myhill-Jones]

Oh… and I almost forgot….
High resolution CT images are the definitive tells for Idiopathic Pulmonary Fibrosis. It’s not just that they don’t know the cause, it has a very distinctive pattern of scarring whatever got it started.
Please hang in there and try not to overthink this until you have all the definitive information.
Just got back from 3 weeks of reef and jungle adventure in Belize…. IPF is something I’m coping with OK !
Whatever your personal diagnosis, we’re all here to help, we’re rooting for ya !

[Gina Myhill-Jones]

Hi Scott ! This took me a while to get the hang of… so bear with me !
Interstitial Lung Disease itself if the BIG “ what you have if you have fibrosis happening in the lungs (the “pulmonary”)”.
Idiopathic Pulmonary Fibrosis is what’s causing my ILD, but yours could have have one of 200 more causes.
Just to make things more confusing, different causes of the fibrosis can all have very different outcomes.
For example… Covid has caused some fibrosis in some who got the disease, but that fibrosis may even clear up on its own !
You need to talk to a Respirologist and get a detailed diagnosis before you assume the worst.

[Gina Myhill-Jones]

Chris… could you perchance have had Covid? Even mild cases are showing some fibrosis. They don’t know yet if it will self resolve, but there’s hope it might.
Other tests to identify the culprit can be really helpful. Pulmonary fibrosis happens for about 200 reasons and not all are as bleak a prognosis as IPF.
Wishing you all the best as you navigate your investigations, here’s hoping for a simple and manageable finding!
Ps… patience is always the tough part of awaiting a solid diagnosis ! Everyone here can speak to that! We’re all in this together !

[Gina Myhill-Jones]

Hi. I think your best bet is always to talk to your respirologist and let them know that you’re interested in drug trials. I’m currently participating in a trial after being turned down for another. I’m in Canada and can’t find any one registery for tests running or planned. But my respirologist hasn’t failed to find the right fit for me.

[Gina Myhill-Jones]

IPF can mess up any activity. BUT you can “McGyver” ways to mitigate or remove risk. I will be snorkelling the Belize Barrier Reef next week !  I will have my portable concentrator on board the boat, with a 50 ft hose so I can swim up and sip O2 as needed.  I’m going in a light roofing/climbing harness with a tow line, and a line with handles for getting a little assist getting back on board.  I am self limiting to the surface ( shallow at the best it’s) and I’ll have an easy inflate PFD designed for surface tests from or back floating.  Now, to get those sharks to behave !

[Gina Myhill-Jones]

Hi ! Happy Spring !
Well, sort of LOL!
I have had Spring Allergies for many many years, and the itchy eyes, dripping nose and sinus headaches are old ( pre IPF) friends.
I have found some pretty effective strategies for dealing with Spring demons… antihistamines, steam inhalation, eye drops and taking it easy if it gets bad. Trying Flonase this year, so far so good ! These things just continue to help, as they have in the past.
I know IPF makes it all seem worse, but really separating and treating just the allergies ( conifer and Cottonwood pollen mostly) gets me back to IPF normal and outdoors enjoying the glorious Springtime !

[Gina Myhill-Jones]

I’m picking up an Oxygo “Next” soon… I believe it’s the same manufacturer, but the Canadian version of the Inogen 6. I need a boost out and about but especially for flying and travel to see family ( they’re located exactly as far away from me as possible lol… East Coast vs West Coast) I still have a lot of adventure in me and I need a light, portable longer term boost.

[Gina Myhill-Jones]

I got to spend a vacation week in a private room in hospital last summer ! Really, the view of Kelowna and the lake was fabulous ! My fault actually, I waited until I was really sick to go to ER. Vaccine did its job though, no harm done and bounced back quickly.

[Gina Myhill-Jones]

Hi DJ
Just curious, do you have personal experience with pneumonia? I do. Have had a few “ go’s” with it when I was younger. Zero scarring from a few bouts. I have recently (2021) been diagnosed with IPF but it’s not related. I also had a recent run in with Covid and it thankfully didn’t add to scarring or worsen the IPF. I know from our local lung center that they are seeing Covid related PF and that it appears to be more prevalent in the folks that got Covid before vaccines. It’s not everyone every time, and there’s hope it’s resolving but for some reason it’s clogging up our respirology department and putting a real strain on patients and staff alike.
Wacky? Yup, the world is a less than sane or safe place these days, but I’m making the best of it.
C’est La vie.
Peace…. G

[Gina Myhill-Jones]

I got in some quality shark time ! Snorkelling was fantastic !

[Gina Myhill-Jones]

Hi! Old scuba diver here ! It takes a full relaxed breath to clear CO2 from the snorkel and replace it with a draw of clean fresh air. Panting when you’re short of breath can mean that not ALL the CO2 is expelled, so levels can build up. The same thing happens with a scuba regulator and hoses. Snorkelling is fun… I limit myself to calm waters and always have a flotation device for rests if I get to be S.o.b.

[Gina Myhill-Jones]

Sadly you’ve been getting some questionable information. Mammograms, X-rays, CT scans… there is no indication for wait times after receiving any vaccine. I did all three in the same month after booster number three. My very good friend is a radiologist and I trust her professional guidance. Respirologist, GP, …..even the dentist all completely unconcerned with X-ray exposure after any vaccine. ( up to date on my tetanus too… same time frame)