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At age 53, I've recently been diagnosed with Obstructive Bronchiolitis & am scared stiff

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sherylbceroc
sherylbceroc

I'm a 53 year old non smoker who has suffered with supposedly 'mild' asthma since the 1990s.  Various inhalers have not helped and symptoms gradually worsened (severe breathlessness when walking up even slight inclines) that I asked to be referred to a spirometrist.  Spirometry test results indicated COPD rather than mild asthma, so i was referred to a pulmonary consultant, had more lung function tests and a CT scan which revealed extensive scarring and air trapping, "suggestive of obliterative bronchiolitis"; a solitary pulmonary nodule with calcification (1.8cm) was also discovered in the middle lobe of my right lung and i am now awaiting PET/CT scan results to find out if this is benign or cancerous. In the meantime, I have been taking Prednisolone 30mg/day for the last 5 weeks to see if my lung function improves at all - ie, the consultant wants to see if there is any reversibility of my symptoms, but he is not confident that this will be the case as the damage looks extensive.  I have been told that my lung function is approx 50%.  I would be interested to hear from any other adults on this forum who have been diagnosed with this condition, and find out how quickly the disease has progressed, what medications have helped you and what your prognosis is.  I am totally petrified at the thought that even if i dont have lung cancer, this other condition could kill me within a few years.

4 likes, 48 replies

48 Replies

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  • daniellegagne22
    daniellegagne22 sherylbceroc

    Posted

    Hi my name Danielle I wrote here about 9 months on behalf of my sister is Any one still in this chat?and would like to text me @860-778-9690..please we need some insite!
    • becky8687
      becky8687 daniellegagne22

      Posted

      Danielle,  I would be happy to chat with you.  I also have this disease; diagnosed in 2014 at the age of 55.   What state do live in?  Not sure what kind of insight you are looking for, but feel free to reply.  
    • daniellegagne22
      daniellegagne22 becky8687

      Posted

      Hi Becky..thanks for getting back to me! We live in CT..do u have facebook? Or u can text my number so it can be easier to chat..
    • jen08284
      jen08284 daniellegagne22

      Posted

      I'm new to the forum with a recent diagnosis of OB. 60 yrs old and thought i was healthy. very stressed about the prognosis. my hope is to get stable at this point. having a discussion with the pulmonologist this wednesday to get more details.

    • nancy49022
      nancy49022 jen08284

      Posted

      Hi Jen and anybody else still on this thread!

      I was diagnosed in 2007 at the age of 37. I was given a very short term prognosis, but am still here in 2019 having had no transplant and not yet requiring oxygen.

      For me the diagnosis is probably connected to Collagen Vascular Disease and many Autoimmune Diseases. I won't bore you with

      the gory details, in case you are not on here anymore.

      I live in the NYC area, have a great Pulmonologist and know quite a lot about the disease.

      If you or anyone sees this and has questions or concerns, I will do my best to help in a responsible manner. NOT everything written here is necessarily true or will happen to each of us individually.

      Doing your own research may be helpful IF you know what and what not to look out for! DEFINITELY be an advocate for yourself, but don't blindly listen to everyone, including docs, if you don't have the highest respect and trust in them.

      I am absolutely NOT a know-it-all, but i have been chronically ill for 39 years, so I've learned a lot.

      BEST health to everyone. I have no magic tricks, but promise to be responsible in what I say to anyone interested.

      ALSO, the man who wrote the book on this disease is DR. GARY EPLER from BRIGHAM and WOMEN'S HOSPITAL at HARVARDin BOSTON, MA.

      His article can be googled, just know it is in doctor speak, as it was from research. I spoke to him and he is a gracious man who was helpful to me way back!

      All the best,

      NANCY

    • jen08284
      jen08284 nancy49022

      Posted

      Thanks Nancy-

      I'm happy to hear that your condition has not worsened. I seem to have stabilized at approximately 30% lung capacity. I'm under the care of the Duke Lung Transplant Center with no expected transplant timeline. Could be 3 months or 3 years or hopefully never. my only meds are azithromyocin and QVAR. would be interested if anyone has other meds that have resulted in positive outcomes. I have an article on OB written by Dr. Talmadge King of UCSF. Will look for the book from Dr Epler.

      thanks for responding-

      Jenny

    • nancy49022
      nancy49022 jen08284

      Posted

      Hi Jen,

      I am happy you are stable...although I get that 30% is not the best place to be.

      i am due for an HRCT and PFT because my CO2 levels are rising and I'm having more trouble breathing, but hopefully it won't be too bad.

      I was on Azithromyocin for several years along with Prednisone and even Enbrel to try and stop progression. After a few years on 60 mgs of Prednisone, it destroyed my muscles and bones and bloodwork was wacky so they took me off of it. The Enbrel and azithromyocin were stopped as well. I use Spiriva, but I don't think it helps much.

      They have said I am not a candidate for transplant ever due to my Autoimmune Diseases and thechances being too high of rejection. Rejection from a lung transplant is Constrictive Bronchiolitis, which you probably knew. Anyway, for me, if it continues to get worse, I am out of luck. I am on borrowed time now, so I am so grateful for every day!!!

      Thanks for writing!!! I will check out the Doc you wrote about too!

      Take care.

      Nancy

    • ChristinaBell
      ChristinaBell nancy49022

      Posted

      Hello. What autoimmune disease do you have? I know someone who has Lupus and had BO and was able to get a lung transplant. I also have an autoimmune disease and hope I can get one if I should need one. Did you try many centers?

  • max56587
    max56587 sherylbceroc

    Edited

    i am 41 years old and i started having shortness of breath and a productive cough at 35. I was diagnosed with asthma and treated with albuterol and a cortocosteroid which had no effect. My lung function tests were normal due to mine being all small respiratory. It might all be small respiratory anyway? My condition progressed and I was diagnosed with Chronic Bronchitis. I have seen numerous Doctors including several primary Doctors, several ENT's, an infectious disease Doctor, urgent care Doctors, multiple Pulmonologist's, had multiple CT's, XRAY's and 3 or 4 hospital stints with no diagnosis. I got worse one year ago and was beginning to give up so I messaged a lung specialist at UNC Chapel Hill, which is less than an hour away from me and within a week the appt. department called with an appt for a HRCT. Doctor diagnosis was OB and sent me home with a 3 month regiment of Brovana and Buesonide which I take both twice a day. Brovana is cutting edge right now and helps some but I still need something inbetween. He said if I lose 25lbs. and stay on the medicine I could be symptom free or halt the disease. The Brovana and the buesonide are a fine particle nebulizer medication. I cried in the Dr's office because I had finally found an answer instead of "it's all in my head". I have good days and bad days but hopefully I can live a long life. I'm praying for everyone on here because a lot of you guys are worse than me. We are all walking the same path and you all have my thoughts and prayers. Thank you for letting me share and to have somewhere to fit in.

    • jen08284
      jen08284 max56587

      Posted

      Sheryl

      I was diagnosed with OB January 2019 with a lung biopsy. Have been on Azithromycin 1X daily and QVAR inhaler 2x daily. My lung capacity is somewhere between 30-35 percent and seems to be holding steady for which i am grateful. I started out at UNC specialty pulmonary clinic but moved to Duke Lung Transplant Center for twice annual PFTs and other tests. I'm going to ask them about the Brovana and Buesonide.

      I hope you are doing well.

      Jenny

    • max56587
      max56587 jen08284

      Posted

      Hi Jenny, I'm sorry for being late to the response. I don't have notofications set up to see messages. It's nice to have someone to talk to about this because I feel alone in all of this. Do you feel short of breath all the time? Are you tired all the time? How long have you had this? Thank you for caring about me.

      Max

  • mike61889
    mike61889 sherylbceroc

    Posted

    Hi all,

    I hope you're doing well. Can I ask if any of you started having symptoms while you still had normal lung function testing? I have had issues for nearly a year, but it is undiagnosed. I started having issues in December of 2020. It was kind of sudden, shortness of breath that came on over a couple of days and then hit me like a freight train. I had a dry cough leading up to it that I just kind of blew off. I spent 10 days in and out of the hospital. They did a CT and PFT and gave me prednisone. CT showed nothing. PFT was "normal" but had obstructive pattern 69% FEV1/FVC. RV was 151%. But my FEV1 has remained good, around 110%. DLCO is still over 100% too. After about 11 days, things cleared up mostly. I felt pretty good again (no shortness of breath) for 4 weeks after the high prednisone burst. Then in February, the shortness of breath came back. I have been miserable and can't get a deep breath every day since. I had some chemical exposure a few months before breathing symptoms started, but nothing at the time of exposure. I also had severe GERD, but I had that addressed with a surgery. I took every asthma medicine known to man for 10 months without any help.

    If anyone could answer the following questions, it would mean a lot and might help clear some things up for me as to what's going on. If anyone has experienced similar things or not.

    1. Have you ever felt best first thing in the morning before getting out of bed? I have felt this way from the start. I know as soon as I get up out of bed, my shortness of breath will start.
    2. Had a chesty feeling? Like mucous when breathing?
    3. Post nasal drip?
    4. Do you have trouble breathing even while sitting?
    5. Feel air hunger and try to yawn, but not helping?
    6. Feel some breath relief when getting out of a car or getting up from a chair. The very next breath is better. Then it's back to bad again. Almost like it's pushing air out to allow it in.
    7. Have trouble swallowing your spit?
    8. Feel like there is air in your chest all the time?
    9. Take prednisone and then get a mucous cough?
    10. Any good docs nationally (U.S.) that you'd recommend? My experience is they won't do the tests to help unless you have severe PFT abnormalities.

    These are just some of the things I've experienced. My PFT #'s are still solid, so I cannot get docs to do any more tests. I had a CPET, and I am still technically fit enough as my Vo2 max was 48, but exercise is miserable as I cannot get air in.

    • lee16935
      lee16935 mike61889

      Posted

      hi, i know its been a while since you posted. I share a lot of your symptoms and was wondering if you ever managed to find out what was going on?

      Thanks

  • mike61889
    mike61889 sherylbceroc

    Posted

    Has anyone with constrictive bronchiolitis experienced swallowing trouble? What about better breathing before you get out of bed in the morning? I am trying to assess my symptoms and compare to others. THanks so much!

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