Ten months ago someone called Cheryl posted that she had recently been diagnosed with Obliterative Bronchiolitis. Are you still on this forum,Cheryl? I should like to make contact with you if so. Our histories are similar, apart from the fact that I am much older than you. Anyone else with this condition?
All the best
K X
10th Dec 2015 in UK 'Independant' science section carried this item, with reference to extensive use of the suspect chemical in e-cigarettes. If this is the same diagnosis as you discuss I'm afraid it may not be good news.
quotation : "Popcorn lung, more scientifically known as bronchiolitis obliterans, got its unusual name after coming to prominence when a number of workers at an American popcorn factory were found to have developed it due to prolonged exposure to diacetyl, which was used to add a buttery flavour to the product.
Popcorn lung can cause coughs, wheezing and shortness of breath, and in severe cases can damage a patient's lungs so much that they require a transplant.Popcorn lung, more scientifically known as bronchiolitis obliterans, got its unusual name after coming to prominence when a number of workers at an American popcorn factory were found to have developed it due to prolonged exposure to diacetyl, which was used to add a buttery flavour to the product.
Popcorn lung can cause coughs, wheezing and shortness of breath, and in severe cases can damage a patient's lungs so much that they require a transplant."
Thanks gbhall. Yes, I have heard about the popcorn flavouring cause of OB. It was very kind of you to get back to me. OB has many causes, and sadly it frequently develops in transplanted lungs. If I do have OB then it was caused by damage to the lower respiratory tract as a result of PEs. That would be very unusual and no doctor has ever come across that as a cause. However OB is a very uncommon conditon, and so the statistics around it are few. And you are right, if I do have OB then it is not good news. But the way things are my lungs is not good anyway: worsening breathlessness, chest pain, deteriorating PFT results, and no medication that makes any difference so it is important to me to have a diagnosis, even a dire one!
Thanks for your itnerest
K x
I am a little confused here. You seem to be looking for a diagnosis, yet mention PE (I assume Plumonary Embolism) which would certainly be a common cause of the symptoms you describe. It seems to me the Obliteraive Bronchioltis thing could possibly be better called Obstructive Bronchiotis and the other wording is a bit of 'hand waving' by your pulmoniary doctor.
Another thing which is uncommon is what my partner is suffering from, Pulmonary Fibrosis, and has very similar symptoms to those described for OB.
She gets most relief from long-term Oxygen Therapy, plus the usual meds appropriate for SOB, such as steroids, Symbicort, Ventolin etc. Deterioration is sadly very evident however. I am thinking that could be caused by a susceptibility to micro Nitrous particles now far too abundant in diesel fumes. Certainly IPF seems to be rapidly increasing for no known reason.
Sorry I cannot advise better than this.
Thanks for your thoughtful response. Yes, I do have chronic thromboembolic disease, but it is mild, and does not account for the severity of my symptoms. Most of the doctors who have looked at my case conclude that I do have a sudden onset obstructive disease in the small airways. OB would fit the symptoms and results. Airtrapping, hyperinflation, and resistance to steroids and bronchodilators.
So...
Thanks again for your help and concern. I am sorry about wife, it must be very frustrating and exhausting.
all the best to you both
K
Hi Katinka46
My wife was recently diagnosed with constrictive bronchiolitis / bronchiolitis obliterans. I too have left a message for Cheryl, wanting to trade information and get an update on her condition in hopes of encouraging news.
My wife if 54 and the deterioration of her condition from a normal, healthy woman to very low lung function (as determined by several PFT's) was very rapid. Over the course of months, rather than years.
The catalyst for her condition is as yet unknown. The doctors suspect that it may be the result of a past viral infection, but even they admit that they're guessing. She has had none of the headline exposures that are known to cause the disease.
If you'd like to exchange information and comiserate, please let me know.
Thanks
Hi James, Thanks for your response. I am very sorry to hear that your wife has this condtion. I do not yet have confirmtion that I have it. It is just that it seeme to me to tick all the boxes. If I do then the degeneration is very slow. I started 6 years ago with PEs, there were lots of clots, and it seems likely that there were a lot of small clots that got into the microvasculature, the tiny blood vessels. This may have caused the damge to the small airways. I went on coughing blood for 6 weeks and there was a lot of congestion that woud indicate inflammation. it has been slowly getting worse over the six years. I believe that the evidence is there to make a diagnosis or anyway a presumption of a one: ie this looks like OB, has the history of damage to the lower respiratory tract, has the symptoms of OB, is resistant to any bronchodialtor medications or oral or inhaled steroids, and there is airtrappng on PFT and high resolution scan so let's call it OB. I am due for another PFT very soon. Maybe my consutlant is waitng for that to pronounce. He has only been involved in my case for a few months, I think he has not really grasped how very frustrating it is for me after 6 years!
This is an public forum, ie anyone can read it. I am happy to continue our discussion on email but I am not quite sure how to do that in privacy. The Britsih Lung Foundation has a patient forum which is closed to the public and anything on it can only be read by members. There is also a messgaging part of that. If you join that then I am happy to message you. I have teh sme name on that site. If you prefer to continue like this than I am happy to do so. I am interested to know exactly how your wife's diagnosis was made. And if you are both confidnet about her care.
All the best and keep in touch
K x
Katinka46
Thanks for your sympathies and let me extend mine to you as well.
We are in the US, so I don’t know about my ability to register or log into the BLF forum to which you refer.
My wife's diagnosis was ultimately made via a thoracoscopic lung biopsy. Pathology results from the local lab indicated OB/CB. They also sent samples to the Mayo Clinic, where the diagnosis was confirmed. Our confidence is quite high at to the accuracy of this diagnosis.
Also – from my own research I found and interesting case study that was remarkably similar to my wife’s condition. The 2011 case report was published in the Respiratory Medicine journal. The link to that article is found here: http://www.sciencedirect.com/science/article/pii/S1755001711000327
Diagnosis leading up to the biopsy included a full cardio work-up to verify no problems existed with her heart. Then a PFT, followed by a full spectrum of blood tests and at least two or three CT scans. She also underwent a bronchoscopy, during which cultures were collected for further examination. All of those tests revealed “unremarkable” results that still left us in the dark as to what exactly her condition was. There was some initial speculation that it might also be COPD, but that was later disproven by the biopsy.
Your symptoms of coughing up blood were not experienced by my wife, so I can’t share any common information relative to those – sorry.
Post biopsy and diagnosis, she's been put on a course of steroid treatment, along with antibiotics and bronchodilators. I think that they're basically throwing everything at it to see if they can make any difference in her condition. She has a follow-up PFT and consultation is about a month.
Hopefully we'll see some positive results. However, I think that it's very telling that the pulmonologist has also referred her to a transplant center for preliminary consultation and preparation for that approach, if necessary.
I wish you luck.
Hi James
I posted yeterday but before I could finish the internet failed on me and all was lost... Maddening.
Thanks you for your reply. I have read the paper on that case, and it does seem to be similar to your wife's. It does look as though aggressive treatment was able to improve and stabilise the condition if not actually cure it. Hope that is what happens with your wife. Apart from asthma medications, which the doctors want me to continue even though I do not have asthma symptoms, I am now on Azithromycin. This is a long term antibiotic in the macrlide group. It has had some effect on OB patients who have developed the condition after lung transplant. But after three months I cannot say it has had any effect. I think it may work for those whose condition is compounded by infection and inflammation, neither of which is relevant for me.
The British Lung Foundation is a charity that exists for all lung complaints, there are members on the forum from all over the world. It is accessed by using the Healthunlocked umbrella site which has hundreds of other patients groups on it. I belong to the BLF, Asthma UK and Breathtakers which is specifically for OB patients but is very inactive. The BLF community is brilliant, very supportive and there are nurse specialists hwo can be phoned during British office hours, 9-5. They do have knowledge of OB, and there are patients with it, or who, like me, suspect they have it.
I have made contact with someone else who has been diagnosed with OB. He is younger than me: I am 69 he is 63. His is similar to mine as he has had asthma since he was a child. His trigger seems to have been a rogue inhaler which caused him to be hospitalised and he kept insisting that it wasn't asthma. That was all 9 years ago so his has been relativley stable.
Do keep in touch I am very interested adn concerned about your wife.
It is very unpleasant.
All the best to both of you
K xxxx
I was recently diagnosed with having bronchiolitis obliterans, not sure if it is the same thing as, Obliterative Bronchioltis , but it is the inflammation of the smallest broncho airways. I am not certain how I got this. I was told that it is a rare lung disease, and is not curable..the only cure is a double lung transplant, which I may consider. Thank you for posting this chat, and a warm welcome to everyone who has this disease and is on this site! :-)
I've just recently been diagnosed with BO, but have been trying to find out what I have for the last three years. Three years ago, my PFT FEV1 (lung capacity %) was 38%, and this summer, it is still in the same range, which is about 40%. I remember having a horrible bronchitis type of sickness that lasted for about four weeks, and then suddenly stopped, and then about two weeks later, I couldn't breath as well....my lack of oxygen breathing was 'very' noticeble to me. I must have gone like this for about six months, and slowly progressed, because I went from very strong to having no choice but to sit longs hours, and move from chair to chair, since I couldn't walk long distance. About six months of this, and then one morning myson had to call 9-1-1 due to my heart beating at a very fast pace. I ended up in the ER with heart failure (was passed out for the last two hours). Luckily for me, the type of heart failure was reversible! Today I have a normal heart without disease or anything, but my lungs never changed, and continued to progress. I ended up not being able to walk far, and having to sit every 20 feet or so, and if I go outside the house, must be in a wheel chair. I am also on oxygen 24/7. I may consider a transplant, since my doctor says I am severe, even though my FEV1 is 40%. She says that I should at least prepare for one while I am still somewhat able to. I was told it is rare and scientists don't know much about it. I also wonder if mine may not have started with a virus (bronchitis), but from cleaning chemicals...for example, I've used many house cleaning chemicals, but my most favorite one was bleach, and lots of it. I wish I would have been more careful with it in the past, but who knows, maybe it was not the bleach. It could have been many things with me really!
Morning Brenda. (But it probably isn't morning for you? Are you in USA? I'm picking up clues here: 911 and ER) I am so sorry about your condition. it is nasty. It is almost certainly what I have. The consultants I see woud only confirm a diagnosis with a biopsy and they were reluctant to do that. A bonchoscopic biopsy would not be sure of finding the damged bits, and an open lung biopsy carries risks. Have you had either of those? I assume you have been treated with various broncho-dilators and steroids to see if it would respond? And you are so right about the numbers coming out of pulmonary function tests. They do not reflect the severity of this disease. My FEV1 is better than yours, at about 60%. But I am breathless on the slightest exertion. People with COPD with these sorts of FEV1 numbers would not be as severly affected as us OB patients. In fact I have read that for there to be any obstruction observable by these tests the disease is "widespead and advanced." It must be to do with the damage being in the small airways. For it to be noticeable in FEV1 it means that it is kind of backing up to the larger airways. The other test that shows OB is in a High Resolution CT scan, which shows air-trapping. Do your doctors assume that it was caused by the infection? I think there is some evidence that it can be triggered by that. What is significant is that in your case and in mine it happened quickly. Very few other lung diseases happen like that. It is nearly always a long slow process.
Maybe the household cleaners in some way weakened your lungs which laid them open to an acute infection and subsequent damage.
All the best and let us know how things go.
K x
Hello Katinka46, thank you for your response! You sound exactly like you do have the same lung disease as I do.
Yes, I live in the USA, in Florida. My doctor wants me to begin the testing process for a transplant. As much as it scares me to do so, I may just give it a try. I have been speaking with other people who have had double lung transplants, and they love their new life and lungs. It does take extreme dedication though.
I think you many have a point that the chemicals used in my past on house cleaning, could have damaged and weakened my lungs, which layed them open to an acute infection and damage too.
I have had several cat scans, but no broncoscopy or open lung biopsy, and I really hope I don't have to have an open lung biopsy..lol. I have heard that they are very painful, and people do not like having to go through them. The cat scans were observed by a Radiologist specialist who pointed out all my bronchiolies were inflammed. Otherwise, they couldn't find anything wrong with my lungs....just the inflammation of the small airways. I wish they could go down into the lungs and place stents or something....lol.
Do you know if this is an fast progressive disease, similar to IPF (pulmonary fibrosis)? I have had about the same FEV1 for the last three years.
My doctor requested that I make her a list of what I think may have caused my disease. I have been making that list, but I think you are right, since the sickness that I had, just before this disease began, was a very intense and unusal type of bronchitis (even if it was bronchitis). It suddenly stopped, and then I began having hacky but slight coughs, and then began not to breath oxygen as well as I use to...it was very noticeble and uncomfortable to me. I will speak with my doctor about the infection, because I also believe that it is the culprit, plus my constant slight nose dripping, caused by a mild allergy (ragweed).
Thank you for your help! It is so nice finally meeting someone who has the same disease....I do believe we do too. Let me know if you have any questions or need to talk....pm me if you need to also. I will let you know how everything goes too.
XO
Brenda
Thanks for getting back to me. With these rare diseases it really is helpful to meet up with others in teh same boat. it took ages to get a diagnosis. Six and half years ago i had a hip replacement operaation. Immediatley after it I had pulmonary emboli, (blood clots in the lungs). There was a widespread shower of them, all through both lungs. But the damage was worse in the small blood vessels which cannot be seen on CT scans. The PEs did not disperse and so I developed chronic thromboembolic disease. At the beginning there was a lot of congestion and coughing up blood which I was sure was when the damage was done to the small airways. But it took forever for the doctors to understand what was going on. I knew, but they are not good at believing patients. I am more or less clear about a diagnosis: chronic thromboembolic disease and obliterative bronchiolitis. i agree with you about open lung biopsy. There was a young American woman on the other patient forurm I use: British Lung Foundation, who had open lung biopsy to see what kind of bronchiolitis it was. It did sound to be a bit grim. In her case it may have been useful as they discovered that she has a disease which should be treatable. So it was a great relief to her.
You might like to try the BLF site, there are people on it from all over the world. It is a very lively forum with folk with a wide variety of lung diseases.
Keep in touch
K xx
Katinka, I agree, that it is a good idea for people to stay together on these forums, especially those who have the same lung disease, especially rare ones.
That sounded so interesting about the American woman who had open lung biopsy to see what kind of bronchiolitis she had, and they found that possibly it was from a disease that could be treatable. I wonder how she is presently doing...it would be nice to know her current status, and know what kind of disease she had. Also, I would be relieved too, if I were her. She is fortunate to have had the open lung biopsy, or else, she never would have known...good for her! I will go to the BLF site and check it out....I probably would like it.
Sorry you had to have hip replacement surgery, and, also had blood clots in your lungs, and lots of tiny blood clots...sorry to hear that.
My husband had hip replacement surgery also, but never had the blood clots...he also has severe rheumatoid artritis, but you would never know he has it, due to a infusion drug he takes twice every year called, Retuxin. It works great for him. He is age 64, and he use to not be able to walk hardly, bedridden most of the time, and in constant pain, this has gone on since age 27, and up until about five years ago, when he began taking the infusion twice a year called, retuxin.. But, five years ago, he began taking the two infusions of Retuxin per year, and it totally changed him, like as though he never had rheumatoid arthritis. He loves his new hip, and also his new life without rheumatoid arthritis symptoms, due to retuxin.
I will check out the Blf site, and thank you for letting me know about it!
Keep in touch!
Brenda xo
Hi Katinka
Hope all is well with you (considering the cirmcumstances).
Just and update here for you (and any others interested) as to my wife's condition. Her lung function has dropped to right around 20% now and she's moving toward getting a lung transplant at the lung center in Phoenix, Arizona. She's been going through a plethora of tests for about two weeks now to determine if they'll accept her as a transplant recipient. All the testing, poking, prodding, and grilling by various doctors (seems like under bright lights - police interrogation style sometimes) has been a bit gruelling. We're almost through it though and hoping that she may be 'on the list' by May.
During the process, we have met numerous other post-transplant patients who have been kind and forthcoming enough about their experiences to be encouraged. They all seem to be very positive people and very much recommend the procudure over living life feeling like you're breathing through a small straw.
Hoping for the best here. It's going to get worse before it gets better, but we're hoping for the better part.
I am very glad to hear from you. I have often wondered how things were with you and your wife. And it is a while since we were in touch. Although, obviously, it has been very hard for both of you your message does sound positive. I think this may be because of meeting others in a simialr situation?
I follow the story of a young japanese woman with OB (I think in US you call it BO) who has just been through the same gruelling process of assessment for lung transplant. She is now wating to hear if she has been accepted.
As for me, I am one of the lucky ones, the disease is only worsening very slowly. My lung funciton is still good and I am a long way from needing oxygen. But my symptoms are severe and debilitating. I think that is down to the combinaiton of problems in my lungs.
Please keep us in formed abut how things go and thank you again for getting in touch.
All the best to both of you
Katinka
Hi Katinka
Update on my wife here. She's just been listed for a lung transplant and we're hoping for the best of outcomes. They say that the wait times at this facility are quite fast. Stories that we've heard from staff and other patients are that it's measured in weeks rather than months or years.
We still don't know how she contracted bronchiolitis obliterans, but we're hoping to be one of the positive statistics moving forward! I'll keep you posted and thanks for listening.
Morning James. Sorry not to get back to you sooner. Good news about your wife being listed for lung transplant. But good news like that is always tempered by the difficulties of the horrible disease. I am in touch with a lovely Japanese/English woman. She has just been put on the list. One of the problems in japan is that the culture is not very geared to organ donation. She may have to wait a long time. I am baffled by reluctance to donate
organs. Twenty five years ago as I drove to the hospital where my husband was taken after his accident I was already wondering how to speak to the doctors about the use of his organs if he should die. I knew they would have found his donor card but that can always be overruled by the family. In our case he didn't die. I still carry my donor card because even at my age, 70, apparently, there are some organs that can still be used. I don't recommend trying to do anything with the stuff inside my ribcage though!
I hope all goes well.
Keep us informed
K