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

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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.

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  • Posted

    Hi wheelbarrow,

    I wish to soothe you for I understand first hand what you are going through. While I do not share the possible cancer scare, I wish to share my story With the hope of encouraging you.

    Now at age 56, I too never smoked but breathed in second hand smoke while growing up and suffered medical neglect from age 7 up. I was born with severe asthma that did not get better with age. Shortly after I gave birth at age 22, for the 4th time I brushed up against death because of my lungs. While in the ICU I felt as though I would never breathe the same again....and it was true.

    By age 27, I lost 50% of my lung function and lost my career because of my disability. By my early 30's, I lost 20 % more, a total of 70% leaving me with only 30% lung function due to permanent damage.

    The largest portion of my life has been spent in and out of hospitals, emergency rooms, doctors offices, etc.

    Look at my picture and you will see that I look healthy when I should be blue. I am a walking miracle. Now I wish to share some of what I have learned for survival.

    Stare your condition right in the face and determine that you refuse to die from it! Shed all of your fears. Yes you can. Begin visualizing a happy place where you can mentally travel to when you are at your worst. Begin yoga and meditation type breathing because you will need to manually help your lungs breathe at times. Get to know your lungs.

    I also recommend seeing an allergy specialist in addition to the pulmonary specialist to explore any hidden allergies.

    Keep exercising! This will never bring back lung capacity back, but it will enable your body to adjust to less oxygen. While walking, no matter how short of breath you become, train yourself to count as you breathe in and as you breathe out to keep panic under control.

    Steroids are life savers, but try to only use them for the worst of times only. Injections of short and long lasting steroids are a better choice over the pills because it will not damage your body. In fact you could receive an injection every 2 or 3 days and not have the damage oral and intravenous delivery. However, do what you are told to do. 30 years of corticosteroids has caused my hip and shoulder joints to die and replaced.

    Research diligently to gain the facts of your circumstances so you can wage war properly.

    You are young and living in an era where science has created some of the best medications ever to help control your symptoms and stall further damage to allow you to breathe easier. I take Singulair every night 10 mg. Spiriva and Breo inhalers are great for me and other steroid inhalers are great. I keep ProAir life saving inhaler with me at all times for instant relief from sudden flare ups and to use right before exercise. Tessalon Pearls control cough and thin down mucus. Ask for a steroid nasal spray because keeping your sinuses healthy will keep your lungs healthy.

    Drinks lots of water, stay clear of mucus producing foods like dairy. Post in the alternative medicine forum on here to get nutritional advice from the great people there.

    This is long, sorry, but there is so much to share. Please keep us informed so we can support you.

    Sincerely,

    Dawn

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    • Posted

      Hi Dawn, thank for for taking the time to write such a detailed reply, and I don't mind being called Wheelborrow!  It made my smile, although I was a bit bemused :-).  Gosh, you have been through such a lot and it must be a struggle sometimes to stay so positive, so well done to you for your positivity; you are an inspiration.  Has anyone ever talked to you about life expectancy?  The thing that worries me the most is the thought that I may not live to see my daughters get settled down or have families and so on.  They are only 20 and 21 now and I am still in the 'not having all the facts' stage - having only just found out about my illness - that I am fearing the worst all the time.  By the way, when started my discussion, there was an error in my subject title.  The condition I have is called OBLITERATIVE BRONCHIOLITIS, otherwise known as CONSTRICTIVE BRONCHIOLITIS, not 'obstructive bronchiolotis' as stated.  I am not looking forward to next Monday, when I shall get the results of my PET/CT scan, but at least then I shall have proper facts at my fingertips ...

      In the meantime, I shall try and act on some of your advice - I had already been thinking I should drink more water and cut back on some of my dairy products. 

      I shall keep you informed of my progress.

      Best wishes

      Sheryl

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  • Posted

    Hi sherylbceroc,

    I feel like you and share some things...I'm 55, and was recently diagnosed with severe COPD In sept. I found that i apparently had learned to live on a very low blood oxygen level (72 pulse ox) when admitted that day. I was full of CO2. I was in the hospital for 6 days on told to stay on oxygen 24/7. They gave me Spiriva and a steroid called Qvar. I also have 2 nodules on each lung...they were too small to biopsy and they weren't sure but explained that they could be cancerous and often are. Unfortunately had become disabled from circulation issues and have not worked since 2011 so I no longer have insurance and am on a government medical program where everything takes forever to get done...but they had told me to wait 3 months and get a CT scan of my chest to check those nodules. I had that done yesterday right on time bc i scheduled it at that time. I don't know the outcome yet tho. The Spiriva and Qvar helped me tremendously and with the medicine my.pulse ox stays around 92 or 93. Huge improvement so I haven't been on the oxygen. But my first appt with a pulmonologist is on the 27th since being diagnosed in sept!! So I've just been hanging here for the past few months waiting for that. My lungs were so bad that they didn't even register enuff to do the lung function test! So I was severe....but I seem so much better now.... can't wait to be reevaluated and tested. On thing very different is I was a hard smoker for over 30 years but never had the phlegm or even a smokers cough. But I quit on Sept 3rd 3014...the day I was diagnosed and i use the Ecig.. the lung Dr said he had no problem with patients using those. But thank God I quit cigarettes....I never thought I could or would. Anyway...that's my story...please keep me updated on yours and we can compare. Sincerely....ladyjack51

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    • Posted

      Hello and thank you for taking the time to reply to my first post which, by the way was incorrectly titled as my underlying lung condition is in fact called OBLITERATIVE BRONCHIOLITIS, otherwise known as CONSTRICTIVE BRONCHIOLITIS, not 'obstructive bronchiolitis' as previously stated by me.

      It sounds as though you have really gone through a tough time and all the waiting around must be so difficult, but at last you have an appointment with a pulmonologist lined up, so I wish you lots of luck for that and will be thinking of you on 27th.  I hope that is the beginning of a series of treatments which may alleviate, if not cure, some of your symptoms.  It sounds as though you have already had some luck with improved symptoms though, which is great, especially as you haven't needed to go on the oxygen.  Also, a massive well done for finally quitting cigarettes.  I know how tough that can be.  My own mum was a heavy smoker and tried many times to quit - unsuccessfully.  Unfortunately, she developed emphysema and I lost her at the young age of 55.  Ironically, it was her heart that gave out in the end - the state of her lungs put too much strain on it.  I have a feeling much of my lung damage may have occurred when i was younger and a passive smoker around my mum; in fact, my consultant did say that could be a factor - but it seems as though viral infections have probably caused most of my lung damage. 

      I am not looking forward to my PET/CT scan results on Monday, but at least my consultant will be able to give me much more information about my situation and confirm whether or not I do also have a cancerous nodule.  I shall keep you informed.  In the meantime, good luck with your appointment on 27 Jan if I don't hear from you before then.  Best wishes, Sheryl

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  • Posted

    I just realised a mistake in my initial subject heading - the condition I have been diagnosed with is OBLITERATIVE BRONCHIOLITIS not obstructive bronchiolitis.  This is otherwise known as CONSTRICTIVE BRONCHIOLITIS and is also nick-named "vanishing airways disease" - so, if anyone reading this knows of any other adults who have the same condition, I would be really interested to hear from you.
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    • Posted

      Hello! I’m almost 47 and was diagnosed with constrictive bronchiolitis a few months ago. Here is my story.

      In Sept of 2014 I got what I thought at the time was flu like symptoms. I had a cough and didn’t feel well at all. After seeing my primary care physician, he gives me a shot of steroid and antibiotics to clear it up. Well that wasn’t enough. I continued to have shortness of breath for several months. I of course had gained a lot of weight due to previous back surgeries. So I thought the shortness of breath was due to the weight gain. Needless to say, the day after Christmas I was rushed to the emergency room. My O2 sats was plummeting down to 78. I was admitted and test were run. After several days in the hospital, the medical team thought I had pneumonia but also thought that I had lupus. I was released after being on IV steroids and IV antibiotics.

      I started seeing a local pulmonologist that treated me for asthma at first. I didn’t have lupus and thought how blessed I must be not to have that disease. As a few months past, my lung function tests didn’t show any improvement and I got sick again. I then was hospitalized again in May 2015. While there my pulmonologist did a scope biopsy. This biopsy was inconclusive. I continued with his treatment of daily steroids and inhalers.

      In July I found myself back in the hospital for shortness of breath again. As routine I was back on IV meds then released after a week. In August 2015 my pulmonologist sends me to another pulmonologist in the medical center. This doctor ended up doing an open lung biopsy. One of the most painful surgeries I’ve ever had. I suppose it would not have been as bad however, the surgeon cut my liver and diaphragm while conducting the biopsy. Yes, it was repaired but I feel I would have healed a lot faster if that wouldn’t have happened.

      The biopsy did conclude that I in fact have constrictive bronchiolitis. So my original lung doc put me on an immunosuppressant and gradually increased the dosage. He also has me on an antibiotic three times a week along with the steroid and inhalers. My last appointment with him he mentioned that I will possibly require a lung transplant. I sought out an additional opinion and I’m very happy that I did.

      I’m now only seeing a specialist that I feel has my best interest and is trying to stop the progression of the disease. This doctor actually did the 6 min walk to see if I needed supplemental oxygen and I needed it. I’m on continuous oxygen therapy and feel better. The lung transplant may be in my future but I’m hoping not.

      I’m curious as of how I contracted this lung disease. Well my current lung doctor seems to believe it is because some 25 years ago, I worked in an embroidery factory. I don’t smoke now and haven’t in about 19 years. I’m sure that is a possibility and being around second hand smoke. Something that also comes to mind is that for 13 years I used to have my nails done at nails salons. Inhaling acrylic fumes and dust is also something I will talk to my doctor about.

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  • Posted

    Hi sherylbceroc

    My wife was diagnosed with constrictive bronchiolitis last week after a 4 month journey to get some answers.  

    She has never smoked or been exposed to any of the headline risk factors that I read about in my google searches.  No mustard gas, was not in the Iraq war, hasn't worked in a popcorn factory, wasn't at ground zero, etc.  

    She did have a bout with pneumonia 6 years ago, but that seem too long ago to suddenly result in this condition.  She may also started having symptoms of fibromyalgia about that same time, though the doctors never conclusively diagnosed here with it -just suggested it. 

    Her descent into her current condition was startlingly fast.   She did have recurrent sinus infections in the late fall of 2014 through the spring of 2015.  She say an ENT doctor a couple of times, but he was unable to determine the cause or treatment beyond antibiotics.  Then, during the summer of 2015, she developed a cough that produced phlegm.   She began to have shortness of breath in late July and by September was having a hard time even functioning.  In early September, she went to an urgent care facility, thinking that it was another sinus or bronchial infection.  However, during that visit, she was given a rudementary Pulmonary Function Test which showed only 25% lung capacity.  She was given some antibiotics and given referrals to cardiologists and pulmonologist.  The cardiologist found no abnormalities.  After waiting an agonizing month an a half to even get in to see the pulmonologist, she was in really bad shape.   She was put on oxygen after that appointment and a formal PFT that showed only 27% lung capacity (FEV1).  

    She has continued to worsen through the fall of 2015.  After at least two CT scans and a bronchoscopy that were unconclusive, she underwent thoroscopic surgery to pull a biopsy.  Initial pathology results are showing constrictive bronchiolitis.

    We haven't yet been given any formal prognosis and are very worried.  The treatment at this time includes antibiotics, bronchodialators and cortical steroid inhalers.  She may be given pulmonary rehab therapy to try to teach her how to breath better with her condition. 

    Your original post was 12 months ago.  What have you leaned in that time?  How are you doing now?  Have the doctors been able to provide you with any help to put the disease in check or reverse it? 

    If any of the other responders on this thread can also reply too with any new insight, it would be appreciated.

    Thank you. Hoping for the best for everyone here.  

     

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    • Posted

      Wondering how your wife is. I have same condition and am down to 20%, on oxygen 24/7. Was diagnosed with end stage lung disease in 2012, but am somehow still kicking. 
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    • Posted

      Hello, so sorry for not replying sooner; I have not been on this forum for a long while, so only noticed your message today.  I am so sorry to hear of your wife's ill health and especially how it came on so suddenly; what a shock to both of you that must have been.  I hope somehow something can be done which improves your wife's symptoms and overall prognosis.

      Since my original post, I have been under the care of an excellent Consultant and I have regular chest x-rays, lung function tests and CT scans.  My condition now is pretty stable and I am only having to use 2 inhalers twice a day - both steroid inhalers: Fostair & Qvar.  I notice that if I miss a couple of days, my chest feels tight and I get very wheezy, but I soon get back on track when I re-start the inhalers.  My lung function has improved slightly, but not as much as I had hoped.  I am functioning at about 55 - 57%, but I am able to walk on the level briskly and even up small slopes now without using any Ventolin. Obvoiusly, my symptoms are nowhere near as bad as your wives, bless her, but I shall pray that a consultant somewhere is able to prescribe her med's which improve her breathing.

      I have also vastly improved my diet and eat a wide variety of fruits and vegetables, plus various supplements to boost my immune system and generally lessen the risk of catching infections, as well as (hopefully) reducing inflammation in the body.  Many COPD patients have evidence on CT scans of inflammatory nodules and scarring in the lungs, so it made sense to me to do what I could to reduce inflammation in my body.  I also read that sugary foods cause and exacerbate inflammatory responses in the body, so have vastly cut back on biscuits, cakes, sweets, in fact most refined carbohydrates.  I also make my own Golden Paste out of organic turmeric, organic cold pressed coconut oil, water and black pepper, which I consume 3 times a day.  Coconut oil itself is an anti inflammatory and there appears to be strong evidence on the internet that a component of turmeric (curcumin) is also helpful in this respect.  Who knows?!  All I know is:  I have had no colds or chest infections in the last 10 months or so and at my last check up with my consultant he said "whatever you are doing, keep doing it - I don't need to see you for a year now - unless you start to deteriorate", so I am guessing the last scan results, combined with my lung function tests are encouraging.  He did say that I will not improve ... the aim is to remain stable, so fingers crossed I can do so. 

      I have not learnt anything new over the past year about my condition or what caused it, which is very frustrating - all I know is that my lungs must have been damaged for a very long time before any symptoms arose, but there is no definite way of finding out what caused it - it is likely to have been an infection at some time in my past sad.

      Anyway, I wish you - and your wife - and anyone else reading this - all the best for the future.  Take care and keep us updated.

      Best wishes, Sheryl

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    • Posted

      Hi Lori

      As I recall, when I wrote last time, my wife had just been released from the hospital after undergoing surgery to obtain a biopsy to confirm her condition.  She had a rough couple of months recovering just from the surgery.  She has regained some strength in the months since that first post. 

      Her medication has remained mostly unchanged.  Antibiotics, bronchodilators and cortical steroid inhalers.  She was also on a steroid (prednisone) for the first 4 months, but has since been taken off of that. 

      She has also had several PFTs since January and so far hasn't seen any increase or significant decrease in lung capacity (right around 25%).  She is on full time oxygen at home (2 liters/minute) and takes a tank with her when she leaves the house.  

      She has a regular cough that is particularly bad in the mornings, but occasionally has a coughing fit during the day.   She is also unable to do most any activity without feeling fatigue and has to rest with continuous oxygen feed (rather than a pulse feed) to regain a level of comfort after walking even short distances.

      The pulmonologist that she sees locally has also referred her to a lung transplant center to get on "the list".   The pulmonologist there seems very knowledgeable and agreed with the original diagnosis of bronchiolitis obliterans.   However, at this time, he believes that she has stabilized at the 25% lung capacity and is not “in the window” where she would otherwise be actively on the waiting list and preparing to go to lung transplant surgery as soon as donor lungs become available.  He indicated that he has several other patients with bronchiolitis obliterans that have been stable for 8 years and are not yet in that window. 

      So for now, she’s on a schedule of quarterly PFT tests and CT scans to check her condition and we keep crossing our fingers in hopes that she will not deteriorate further and that technology in medicine might find some relief for her condition.

      I wish you luck with your condition.   Thanks for responding. 

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    • Posted

      Lori

      As another update, my wife had an appointment with the transplant center in December for her regular status check and PFT.  During that appointment and evaluation, it was determined that she has lost enough lung function (down to 21% from 28% in 3 months) to be "in the window" for a transplant.   Her next appointment is early February and we've been told to be prepared to make serious decisions at that time.  We won't know for sure until that time, but suspsect that following that appointment, she will be on the wait list and rapidly moving toward a transplant operation, depending upon the availability of compatible donor lungs. 

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