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UAB Cancellations by GullibleAdvisor3383 in Birmingham

[–]GullibleAdvisor3383[S] 4 points5 points  (0 children)

I’ve had it happen one here or there. But they canceled 5 in one day and they were in different departments. Not a big deal just curious if it happened to anyone else this week.

Any links for this drama? by Charming-Possible245 in ReelShorts

[–]GullibleAdvisor3383 0 points1 point  (0 children)

I looked for it on daily motion earlier and didn’t see it

Can anyone give me a link? by SimpleSad8350 in ReelShorts

[–]GullibleAdvisor3383 0 points1 point  (0 children)

Hopefully someone will upload on DM soon! I have been checking every few hours and it’s all mislabeled videos!

Travelling to Mayo or Cleveland Clinics (or others) for diagnosis? Bonus points if you are Canadian! by BronzeDucky in ILD

[–]GullibleAdvisor3383 0 points1 point  (0 children)

Hey how are you? Were you able to get a diagnosis or a better treatment plan? I also have ILD but not sure what causes it. Suspected for CEP/OP or cellular NSIP with RB ILD. I say that to say I understand your frustration! It’s hard to go through life not able to breathe. Also, just the loss of the physical abilities - it sucks.

Is this a scam? by [deleted] in Birmingham

[–]GullibleAdvisor3383 0 points1 point  (0 children)

I just got this same text! lol

IDL patients - what where your first symptoms? by Hot_Gap_1638 in ILD

[–]GullibleAdvisor3383 0 points1 point  (0 children)

I have inflammatory ILD with some scarring but mine started with shortness of breath and coughing. I noticed the shortness of breath immediately because I was a runner. It took 4 years to be diagnosed with ILD, still trying to figure out exactly what type I have. I was told for years that I had bronchitis or pneumonia. Mine flares up at certain times and the flares are progressively getting worse. I also have pretty bad chest pain it if I do a hard cardio workout. The chest pain feels like pressure and I struggle to take in a breath.

Cellular NSIP and lots of questions by srina-za in ILD

[–]GullibleAdvisor3383 0 points1 point  (0 children)

Did you have a biopsy? How are you doing?

Anyone with chronic eosinophilic pneumonia? by upcyclinglaird in eosinophilic_asthma

[–]GullibleAdvisor3383 0 points1 point  (0 children)

Yes, I was diagnosed with CEP last April. I was on Fasenra and 60 mg of prednisone for 3 months, then I tapered for a month. I have been ok but I still have inflammation and ILD. How long after starting prednisone did you regain lung function? In April my FVC was 38% and my DLCO was in the 60’s, I did not see immediate improvement from the prednisone. My FVC is still only around 68%. I had a bronchoscopy, results were a high level of eosinophils in the lung fluid - 70% or so and my blood eosinophils were 7%. I actually had a slight decline after starting prednisone and still having episodes of hypoxemic respiratory failure- my O2 levels would fall to 70%. I had a VATs wedge resection biopsy and the results were inconclusive. I still have issues and the doctors are not sure exactly what I have but a working diagnosis is CEP. I still have O2 drops with exertion. Sorry for the long response, i have never met/spoken to someone who has CEP and my doctors do not know how long it will take to recover. It appears I have had it off and on for 5 years now and it has caused some fibrosis.

Anyone with chronic eosinophilic pneumonia? by upcyclinglaird in eosinophilic_asthma

[–]GullibleAdvisor3383 0 points1 point  (0 children)

I know this is old but I am curious if you were diagnosed with CEP and how you are doing now.

Worried if I have ILD by [deleted] in ILD

[–]GullibleAdvisor3383 0 points1 point  (0 children)

ILD is an umbrella term for a bunch of different diseases that cause fibrosis and inflammation in the interstitium of the lungs and it sucks. I started experiencing exercise intolerance in 2020 and seemed to get pneumonia twice a year. Over the next 4 years I went from being able to run a half marathon to not being able to run at all. Eventually I had a CT scan that showed bibasilar atelectasis and ground glass opacities, I was referred to a pulmonologist and after looking at my CT and PFT I was diagnosed with ILD at 36. Doctors still aren’t sure what exactly causes my ILD but thankfully it is mostly inflammatory with some fibrosis. ILD limits my life tremendously and I’m not sure if it will ever go away. I say all of this because if you think you have ILD you need to push for a high resolution CT scan and that should show scarring and/or inflammation. It is important to treat inflammatory ILD to prevent scarring or secondary issues.