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.
4 likes, 48 replies
mel1624 sherylbceroc
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Hello my name is Melanie n I have constrive bronchiolitis for 13 years now. I have never smoked n I was shocked to find out I had something like this. But I was around a stove fire thanksgiving day thirteen years ago n it apparently took my lungs. I was told I would have about five years w or without a lung transplant then. I also has a little girl n I refused to leave her then n now. This disease does take every ounce of strength n air we have. Sadly. I would like to know how ur doing also so feel free to email me to sulk at any time. Anyways mine has progressed to the point now of only a lung transplant will help. That's if I am approved. I can tell y I am n no shape to have one because in the years that have passed my heart has literally tripled n size because of the work it's down to move my lungs up n down. It's weird how this works isn't it? I ac tell u I look back. Think how badly I have felt thru the years n now I think those were the good years. Again sadly. I seriously do not wanna hurt u anymore. But mine is way past help now. I am praying to see my baby graduate n maybe into college. God has helped me this far n I am praying I can make it till then. It's been difficult the pay year especially. I lol at things by how far I have to or can walk without losing my air completely. It's hard I know but u can make it easier w pray. I don't know if u believe or not but I was supposed to die years ago. My daughter n my husband r my rock. I can't make it without him n I'm going as far as I can for her. I ah e lived on prednisone n inhalers for years. It tends to put weight on which makes it harder to do anything n now I'm paste it helping. No cortisone inhalers have ever worked sadly. I haven't found anything that's worked for me as far as meds n ten years. But I gues if I had to tell u anything it's that these first years r definitely the best is if u have the chance to do a transplant it's probably ur best option liking back. I've turned it down for years because again they told me five years. Now five years seems awesome without the breathing struggles. I pray u have some great long and happy years to come. Melanie
daniellegagne22 mel1624
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kaelyn16 sherylbceroc
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Hi! I have Bronchiolites Obliterians(BO). I just turned 16 on December 21st. But I was diagnosed with (BO) in 2013. They could never find out why I had scar tissue buildup in my lungs. But before I started having breathing issues, when I was around the age 6 and every winter I would get mouth ulcers and lesions all over my body. To this day they still can't find out why or what I have that caused me to get that. Anyways when I started having breathing issues is the start to where I never had any more mouth ulcers or anymore skin lesions. I go to UofM hospital! My doctor has tried putting me on iv steroids every 3 days.. I would only get the negative side affects With apsolutly no good outcome. I've been on so many antibiotics I have started to reject them after being on them so much. Steroids are my only relief. I've once had to get a steroid shot in my butt at a physical. I ended up having to be rushed to the ER because I passed out. I'm not afraid of needles are anything. But I passed out and my doctors don't know why. I'm pretty much a medical mystery is what they call me. My condition is so bad that I can't go to school since the bacteria from pretty much anything would cause me to get a lung infection, and my breathing is way to bad to be able to walk to my classrooms. So I've pretty much had no opportunity to have a kid life with me being in and out of hospitals so much. I've never smoked a day in my life. I'm only 16 what could I have done to cause this.. My doctors and myself still have no idea. But I've done some research of my own and Bronchiolites Obliterians(BO) is also called Popcorn lung because in 2011 they found out that the flavorings they used in popcorn factors cause multiple people to end up getting (BO). They shut that down but now the flavorings are now being found in Ecigs and also in Vape juices. Just putting my knowledge of what I know out there for people to know not to smoke anything. Because it's not at all healthy for their body and are taking advantage of actually being able to breathe right. But right now I'm waiting to see if I need to get a lung transplant. Which is pretty scary for me.
kris12995 kaelyn16
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Listen to your doctors, and google, google, google. Do your own research so you know what your doctors are talking about. Try to find out about different research projects that you may be able to be part of such as stem cell research. Find the best specialist you can and eat right and try to get some exercise. Stay positive most of all.
Leemur70 kaelyn16
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Hi kaelyn16,
My son is currently at U of M mott children's hospital and was just diagnosed with BO today. He also has CVID which is an immune deficiency. He is only 15 and has been in and out of the hospitals for 10 years. We are probably seeing a lot of the same Dr. My son and you have so much in common as he is going into 10th grade and misses weeks/months of school but refuses to be home schooled. I can only imagine how scared you are as I am scared for my son and how this will affect his life even more. You both should be living a happy and healthy teenage live without worring about lung transplants. I wish you all the best and will keep you in my prayers along with my son.
Stay strong and positive!!
daniellegagne22 kaelyn16
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carolyn58042 sherylbceroc
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daniellegagne22 carolyn58042
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kendall1873 sherylbceroc
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kendall1873 sherylbceroc
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daniellegagne22 sherylbceroc
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Hi hopefully someone can help.me with some answers! My twin was diagnosed this past weekend with constructive broncholitis were only 29 and she never smoked a day in her life.she has had breathing problems for about 6 yesrs now and it has only gotten worse to the point she can not even walk up stairs...they did a lung biopsy and it came back she had nsip it wasnt until this hospital stay the past weekend they said it was constructive broncholitis..now they are sending her biopsy to kansas for the last say...were so heart broken the doctors said theres basically nothing they can do but keep her on meds until she needs oxygen and then the lung transplant.shes been on prednisone 30mg a day for about a month they made her feel 10x better she had had energy and the chronic cough went away but when she ran out everything came back...thats what led her into the hospital this past weekend her oxygen were in the 70s i believe ....but thats when they csme back with the bad news.they want to take her of prednisone slowly.i dont know how much lung function she has but they see alot of scarring.ughh i dont want to loose my sis...i dont know if its possible they misdiagnosis her...I know the out look isnt good..can someone please give me some light in this horrible darkness
kris12995 daniellegagne22
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Hi daniellegagne22,
?My husband got his constrictive bronchiolitis from tours in the desert. We went to see a Dr. Robert Miller at Vanderbilt University Hospital in Nashville. He is treating a lot of the soldiers with this issue. He has my husband on Advair 2x a day and azithromycin. Other doctors kept treating him for asthma and he was on so many different inhalers per day. Now he is only on these 2 meds and seems to be doing better. He does take 5mg of the prednisone against his doctor's wishes, but it helps a lot. We are trying to get him down to 2.5mg. The key is to keep exercising, eat well and control your weight. If you don't use your lungs, well, you know. You may have to struggle, but you can live a perfectly normal life...but you just will have to work harder than most. Unfair as it is. Good luck and stay positive.
james59984 daniellegagne22
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My wife was older but has a similar experience. Never smoked and at 53, started to develop shortness of breath. She was resistant to see a doctor, but after a rather steep decline over about 8 or 9 months, finally had not choice. After 3 months of working through the medical system and seeing different specialists, her lungs were biopsied and she was diagnosed (2 labs verified) with constrictive bronchiolitis.
Her pulmonologist referred her to a transplant center in Phoenix (Norton Thoracic Institute at St. Joseph Hospital). Initially, they told her she wasn't "in the window", meaning her lung function wasn't low enough for a transplant yet. We were hopeful because the doctors indicated that they've had some patients that were stabilized, and although at a lower lung function than normal, continued to be able to survive without a transplant.
But, after only about a year, her PFT showed that her lung function had dropped to the point that she was indeed "in the window". She couldn't walk up stairs, had lost about 30% of her body weight and was declining fast. It took about 3 months of testing o be sure she was a good candidate for transplant and to fix some other health issues, but when she was put on the list, the wait time was less than a week before she had a new set of donor lungs. She was off of supplemental oxygen the day after surgery and her O2 sat's were 99% on room air alone. After 2-1/2 weeks in the hospital she was released to go home, followed by twice weekly physical therapy and once weekly clinic visits to check progress.
It's been six months now and she's doing really well. There are lots of daily meds to take for the rest of her life, and they all have their own little side effects, but it beats the alternative. The transplant center in Phoenix is the busiest lung transplant center in the nation and apparently has the shortest wait times. At only 29, I would bet that your twin would be a good candidate.
daniellegagne22 james59984
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ladyjack51 james59984
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Ladyjack51
james59984 daniellegagne22
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Hi Danielle
We're 1 year and 3 months post-transplant and she's doing well. So well in fact that she has returned to work. So far, her only issue is endurance and being able to make it through the work week. She's pretty beat by the time the week is over, but we're hopeful that she'll gain stamina as time goes on.
Her vitals remain good with O2 Sats in the 96% to 98% range (w/o supplemental O2) and BP, etc. all good. We're hopeful that her recovery continues to be strong as the years pass......