Constrictive Bronchiolitis - Please Help Me

[mncst1988]

Hello,

I am new here and I believe I have constrictive bronchiolitis. Here is my story:

I was diagnosed with Sarcoidosis in 2017 via VATS surgery. I never really understood how I got it. I originally went in to my doctor because I had bouts of GERD that woke me up at night with severe coughing which then led to a fever the next day that resolved by that night. Saw an infectious disease doctor, referred me to a pulmonologist for a lung nodule they saw on a CT. Which was how I eventually had the VATS surgery.

Fast forward a little bit I still have bouts of GERD that wake me up at night, some times so bad that I get I am coughing up gunk (think its sputum) and would hear crackles which I suppose were from my lungs (when I inhaled or exhaled). I didn't really know what was going on because usually when this happened I would cough for a little bit and the crackles and sputum would resolve after a few hours. My guess now is I was aspirating my GERD. Generally I would feel ok the following day and could continue on my with whatever I had planned. COVID Hit in 2020 so I would pretty much scared to leave my house so didn't really see my doctors in for that year.

Now in 2021 is when things turned. I started having trouble sleeping and felt just kind out of breathe unusually.I went to the hospital for a stomach issue and the CT scan they gave me had a finding of Bibislar Tree in Bud opacities. I went to my pulmonary doctor actually concerned about bronchiolitis specifically but got brushed off. Was told I had slight asthma and prescribed a new inhaler for my sarcoidosis. I then went to another pulmonary doctor with the disk from the hospital, and got told it wasn't bronchiolitis again. I had a 2 PFT's and one had a very slight obstructive pattern which had me convinced but then I had a repeat one a few weeks later that was normal. It's my sarcoidosis or something else I was told. Also got had a sleep study done and apparently had OSA event though I have never had trouble snoring before.

Fast forward 3 months, get another CT scan at ER for shortness of breath. That shows multiple nodules (ground glass opacities) with one 5 MM nodule and waxing and waning etiology

Back to pulmonary doctor - another CT scan that informs me the one nodule grew from 5 MM to 8 MM and everything else the same as the last CT from the hospital- but my pulmonary doctor again tells me its not what I think. It is my sarcoid. 2022 now.

My father passes away and even though I still feel short of breath I kind of just shut down and think its my sarcoid. Finally go back for a follow up at the end 2022 and get another CT scan. It seems the 8 MM nodule has disappeared but I have chronic and bronchietastic changes. Called my pulmonary doctor - same thing doesn't think it's anything to do with constrictive bronciolitis. So there is my story. Might have missed some things so if you have any questions please let me know. I can provide the "interpretations" for my CT scans if anyone is interested.

I am just really struggling with anxiety and depression right now. Told my wife we should sell our house and start saving all our money because I am going to be bedridden soon.

I have been off and on Breo Elipta and Arnuity Elipta (currently take this). Have taken prednisone 30 day course in 2021 and 2022 but didnt really notice a difference I think. Take omprezole for GERD.

Location Pittsburgh, PA

I guess my questions are;

Is this the death sentence I read about online?

Does anything help - medicine, vitamins, etc.?

Any specialists I should talk too?

Anything would help and if anyone wants to discuss please let me know.

[Hidden]

I don't understand why you are so fixated on constrictive bronchiolitis when numerous scans and several experts in their field have told you that it is not. You have sarcoidosis and that in itself will carry changing symptoms. I don't know anything about living with sarcoidosis ans so can't tell you about living with it. There are several members on the forum who have had sarcoidosis for a long time and hopefully someone will be along to talk to you. Interestingly, one of your scans showed mild bronchiectasis development. This is the condition that I have lived with for 69 years. It can develop from having other respiratory conditions. Mucus collects in damaged areas of the lungs. It is only a thought but given that it shows as mild, mucus may be collecting in your lower lungs during the day but you do not feel the need to get rid of it. When you lie down, the mucus moves upwards, makes you breathless and demands to be expelled. You need to start again with a respiratory consultant who is an expert in bronchiectasis as well as sarcoidosis. Most general respiratory consultants don't have enough knowledge of either of these conditions. You have been living with sarcoidosis for a long time and bronchiectasis is very manageable. Don't sell the house yet, you have too much living to do!

[Alberta56]

Littlepom is very wise and knows a great deal about respiratory ailments. But none of us on this site are doctors and we do not have access to the battery of scanners and other hi-tech machines that doctors use. Please try to accept that the various doctors' interpretation of the CT scans you've had are accurate.

[Caspiana]

Hello there. Like LittlePom I don't understand why you assume you have Constrictive Bronchiolitis. With severe GERD, stomach acid enters the esophagus and it is possible for it to access the lungs, particularly during sleep, and cause swelling of the airways. This then leads to asthma reactions and can cause aspiration pneumonia. If you haven't already then you need to get your GERD seen to.

I am trying not to be harsh here but talking about selling your house and your own prediction of being bed ridden is frankly very regrettable. Many people here have what doctors would describe as end stage lung disease. But giving up on life is not the answer. We all get downers at times. This I do understand. Please know attitude is everything. It is time to pick yourself up and dust yourself off and stay away from Google.

I was diagnosed with Constrictive Bronchiolitis also known as Bronchiolitis Obliterans almost nine years ago now. I was never bed ridden even when I was on oxygen therapy and struggled to breathe everytime I took a few steps. Five years ago I was end stage. I had a single lung transplant in 2019. I never, ever considered selling my home, not once . I went back to teaching albeit part time. I enjoy my life and am now taking up tennis. I still have the disease in my left lung. But I am alive. As long as I am able, I will live my life to the fullest. You should consider doing the same.

Best wishes to you.

Cas 🌸

[Karenanne61 in reply to Caspiana]

🙂❤️🙂

[Deejay62]

Hi mncst1988. Please don’t even think about selling your house unless you have other properties you can live in. Renting is very hard out there and I’m sure you don’t want to move every year.

I have heart failure and pulmonary hypertension, the latter I found out this year and it’s severe. Those symptoms you mention are the exact symptoms I have. Recently my doctor gave me salbutamol asthma pump after I contracted a chest infection and the crackling sound I get, usually I thought because my body is overloaded with fluid, due to heart failure, as gone.

It’s no good looking up symptoms on Google there are loads of different illnesses with the same symptoms. You will drive yourself crazy. Please listen to the experts on here, and also wait, the 2 weeks will go by quickly.

[Patk1]

Get yr nose out of google+medical books!!! It's obviously adding to yr anxiety which can cause breathlessness& difficulty breathing so all you r doing is fanning the fire. The LAST thing anyone of any age, with lung disease, should do is be bedridden!!#🙄. Deal with what you have.yr wife must b at the end of her tether, too.the best thing with bronchiectasis is lung clearance = getting mucous up,it's what causes the rattling.there are techniques on ALUK.id do ea morn & evening.youll feel better for it + itll help reduce infections.also keep away frm people with viruses as they can go to our lungs.if u haven't already,do get help for yr depression+ anxiety.life is for living,even though it's hard at times. Welcome to the forum x