I am new here. I have Bronchiolitis Obliterans. Probably Autoimmune Mediated. I do not have GVHD. I have not had any transplant. I do have Psoriatic Arthritis. Apparently, I am a rare bird 
I am looking for other BO people. I am also interested in any clinical studies. Thank you so much!
Bronchiolitis Obliterans: I am new here... - Lung Conditions C...
Bronchiolitis Obliterans
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Artist1956
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Hello Artist1956
I too have BO only I prefer Obliterative Bronchiolitis (OB) because having BO makes me feel smelly. There are about six of us in the forum. Various auto-immune causes, RA, Lupus. Mine is very odd: it was caused by Chronic Thromboembolic Disease. A real head-scratcher for my consultants. I should love to hear your story if you felt comfortable telling it. And I should be interested in what medication you are on.
Kate
It is very nice to meet you. I wasn't searching for this site, but I came upon it during my wandering of Facebook. And, I am going to be running out to meet a friend soon, so don't think that I am rude when I disappear. I live in Philadelphia PA USA. I follow at Temple Lung Center. That's the big Pulmonary center here. I am fortunate because University of PA, HUP, is in my city. So, I am really in a good place. Yes, the true word is Zebras. They have presumed that my OB was caused by Psoriatic Arthritis. (PsA) Studies are starting to heat up in the USA and Japan. There have been a flurry of OB cases connected to Stem Cell/Bone Marrow Transplants and Lung Transplants. They don't want to do their transplants and then lose their patients to OB. The NIH website lists clinical trials if you are interested. Anyhow, I am on Clarithromycin and Prednisone for the OB right now. I am going to run now. I'll check in again tomorrow. Thank you!
Hi,
When you say connected to stem cell etc, what exactly do you mean?
Research is being done because OB/BO is occurring with GVHD post stem cell and bone marrow transplants. Graft vs Host Disease. Also with Lung Transplants. They don't know why. They are presuming an autoimmune response. Go on the NIH website and they have a link to current studies. You will see most of them are old. But, now they are ramping up studies because of the cancer connection. Prior to this, BO was so rare that no one wanted to invest money into research.
Hi Artist1956,
I'm interested in stem cell therapy. Is this only for stem cells from another person or does it occur if they are your own stem cells?
Regards,
Tugun
I have presumed that they are donor stem cells from other people. The ones that are having this problem, have been those with Hematologic Cancers, such as Leukemia or Lymphoma, Myeloma, etc... However, I am not completely well versed on the source of the stem cells. The Leukemia/Lymphoma sites might be of some help. Try HUP, Hospital of the University of Pennsylvania's website. They are world renowned in stem cell research.
Many Thanks!
P.S. I don’t know about rare birds but rare diseases are known as Zebras by doctors, hence my Avatar. And welcome to our Zebra club.
Thank you for being so kind. There are so many of you here. I will just go thru and check in with everyone.
P.P.S. Is your Avatar an Axolotl (May not have spelt it right)?
I didn’t select that Avatar. It came from the computer. I just changed it to a picture I took in Cape Cod. The little red boat, called Edie’s Dory, lives in the water off a place called Provincetown. It is my place of peace. Thank you for welcoming me. I will do my best to stay connected.
Hello Artist1956 . I am a zebra too!! My OB stems from having Rheumatoid Arthritis. I was diagnosed with OB four years ago and am currently waiting for a transplant at Tokyo University Hospital. It's lovely to meet you and hope to hear more from you.
Sending warm wishes,
Cas xx 🙋🐕
Nice to meet you. Mine is from Psoriatic Arthritis. PsA
We will get to know each other on this website. But, right now, I am exhausted. Long day. So forgive me. I will be back tomorrow.
Good night 🌙🌟✋
I have to say that the amazing welcome from so many with BO has been so kind. It is such a rare disease that just knowing that you are out there is helpful. I am not on oxygen yet. I am sorry that you are already on a transplant list. I do hope that we stay connected.
I am not to be in touch with a fellow sufferer Artist1956 . Our numbers are few but we have I think seven (?) OBers here that I know of. I hope you have a good weekend. xx 🌿🌱
Hi Caspiana, I need information regarding how to report a person who is not here for the correct reason. He obviously thinks this is a social dating board. He also obviously has poor eyesight if he looked at my photo! Any info will be appreciated. j
Hello Artist 1956- a warm welcome from another survivor of the rare breed society. I have had OB for about 4 years now. It took an awful long time be diagnosed, but basically I went from being very fit to falling apart wheezing and running out of breath very quickly almost overnight infact. Anyhow a long story short, OB, progressed a slow path, and still I am here, thank the Great Whomever, but I do have bronchiectasis now too, together with a few friendly lung nodules which have mercifully, not grown, and one has even shrunk and become smaller.
I am beginning to get arthritis, but my GP has done the blood tests and they came back negative for RA, and my x rays show is probably age related, so no further investigations will be initiated from my GP as referrals to specialists have to be triaged in importance and its not deemed important to see a specialist...sigh.
Sadly what makes it all so weepable is that I don't get much support from my medical team. Worse, is that I have been discharged from the hospital consultant back to the community primary care, as there is nothing more he can do. To so that I am feeling abandoned is an understatement. But on saying that, I have been I don't like to mention it - for fear of putting the mockers on it, been remarkably well so really I have not had to call in the cavalry to test the situation! However, I still exercise 3 times a week, yoga, gentle aerobics, and pilates. On the whole I manage my garden, ( but it is a pocket handkerchief size) go shopping and get out any about. I get breathless and some days are worse than others, but I pace myself. I remember the hare and the tortoise story - and now the tortoise should be my avatar. Look after yourself, eat as well as you can possibly afford too. Exercise as much as you can. Laugh as often as is humanly possible without being sent away in a white coat. Enjoy every day moment by moment, as those moments are what every body in this world, rich, poor, sick or healthy has. We cant be guaranteed more moments as the very nature of life is terminal. Keep in touch with this group. Even if you read from afar- however, in some things sharing is the new caring.. Good luck in your new rare breed status
Thank you so much for just being a lovely person. This is a very challenging journey. I am about to decide to stop working because I can’t breathe and my stamina is terrible. You have given such good advice. I am going through and saying hello to everyone. I do hope that we stay connected. My Facebook page is under Maureen Rauchet Sestito if you ever need to find me.
Hi artist.i to have ob. Stems from childhood infection which as also left me with another rare desease sayer james syndrome.which is my left lung is really small.so i have 2 zebras. Here to talk anytime
Thank you for connecting with me. You have had a tough road too. I am fortunate because I have only had lung problems for 2 years. Please find me if you need to talk, also. Be well.
If I am a lovely person.... and the emphasis is on IS as its all work in progress . Then perhaps its what having OB has done. It made me stop work because like you my stamina was shot to ribbons, even though my spirit wasn't. Its made be stop and smell the roses, enjoy every precious moment - all of which I previously took for granted because I was much too busy, being busy. I learnt, or am learning to sit comfortably in my own skin. I still mourn the old me, but in some ways I celebrate what new wisdom I have gained just by being slower, if that makes sense. All of mankind sits in a rickety boat of life. So sharing that journey and help bailing it out when it needs to, keeps me going. Good luck Maureen. I will look at your facebook page...xx Meanwhile research all you can, as knowledge is power, enjoy this group - keep moving, keep breathing, keep laughing, keep loving.
Hi ledge,
I have psoriatic arthritis and the doctors were convinced it was age related. Psoriatic arthritis doesn't show up in blood tests. Most diagnoses are given after looking at a history of psoriasis and how the arthritis develops over time. Some people even develop PA without having had psoriasis.
Hello Artist1956,
I'm an OB zebra too.
It's not proven but my OB is possibly because a course of oral steroids lowered my immune system. I had no chest problems until I started the oral steroids prescribed by a doctor.
Welcome to the forum xx
Thank you for your welcome.
Hi wheezyof,
Very interesting. Were the oral steroids for a completely different condition and did you then get chest infections from the lowered immunity?
Sorry I've taken so long to reply. I've been away from home, staying with family for my granddaughters wedding.
Yes, my oral steroids were for a joint problem. previous to that I'd only had chest infections 3 times since birth, not bad for a 62 year old.
Steroids and I was constantly getting chest infections, sinus problems and more chest infections.
Thanks for your information. One doctor has been pushing me to take a drug that will lower my immune system for the psoriatic arthritis but I know that it will be no good for my asthma and the ease with which I get chest infections so I have resisted. I have another doctor telling me basically that it wouldn't be wise to take the drug and as the PA is not too bad, I'll definitely listen to the second doctor and keep working on building my immune system up. I'm gradually getting better from the PA and feeling a lot stronger - so building up my body has been working well. Wishing you all the best with your health.
Welcome to the site Artist1956, you have quite a few on here with OB so you should get some good advice and plenty of laughs x
Thank you so much.
Welcome. I too am a zebra, with quite a collection! I was diagnosed with OB three years ago, probably caused by the drug I was prescribed by my cardiologist for atrial fibrillation, which was persistent and is now permanent. He was very reluctant to do so, but after advice from a colleague at Leicester University he decided to do so. I then moved away and saw a new respiratory physician who diagnosed me with OB and asked the cardiologist to stop that drug, dronedarone, which he did, so fortunately the OB has not progressed very much. However I also have bronchiectasis, and because I had congenital heart disease I also have pulmonary hypertension and a small aortic aneurysm amongst other things. I am on ambulatory oxygen and borderline for long term oxygen. So, a whole herd of 🦓🦓 I am well cared for though, have a caring husband and take each day as it comes. Good luck xx
Your story is just amazing. How have you beaten so many illnesses and kept your joy? There is a bit of research heating up here in the USA about autoimmune causes of BO. I hope we stay connected. Thank you.
Thank you for your reply. Sometimes it is difficult to keep cheerful, and I have had depression for years, but I would rather do things than not, and thank God my brain still functions! We are on holiday at the moment - and it is probably going to rain all week! All the best xx
Hello Rare Bird,
I am another chick with BOOP/COP plus pulmonary fibrosis and a bag of other goodies including RA linked with autoimmune disease. I have traced this kaleidoscope of chronic illnesses to my beginnings in London in the early 1950's where pollution was at its zenith. This has kindly dumped cancer (ovarian and breast) on me. I have always suffered from bronchitis and found that cigarette, gas and perfume fumes cause major breathing problems.
I have now been treated by two Pulmonary specialist, both of whom really haven't a clue and am searching for a third (maybe the lucky one). I have had two extreme spikes in pneumonia, one that nearly wiped me out two summers ago when the heat and fierce winds brought massive gusts of spores from central Australia to Melbourne where I live now. Many asthma sufferers collapsed at the same time. This bout of pneumonia lasted 8 months and I was dosed to immobility on steroids during this time. The second bout was this summer with the same climatic conditions. This time the pneumonia spike only last 10 days as I was rattling with drugs to stabilize my health issues. I am now on a permanent dose of 10 mg prednisolone plus a fistful of other drugs to help me breathe better. I have found that cooler weather is far better for me as is walking as much as possible. I now walk 2 km once or twice each day and feel much better for it.
Management is the key for me. Knowing the triggers and taking charge of my health. All the way through my extreme illness I have repeated a mantra to myself "Walking is Life". Being as social as possible also helps me. I need to have daily goals which bring joy. I see as many people as possible and when I feel bogged, I go to my favourite busy cafes and talk to people. Everyone is happy to share. The worst time for me was when I was housebound for 8 months and saw very few people. My husband became my part time carer but I did loose friends and family because they couldn't cope with my illness. But for every person I "lost" I gained new angels who flapped in from all around the world.
Support is vital during these scary times. I always remember that I am not alone. It is great to find a fellow cougher!
Let's keep in touch.
Cheers, Dee
You really have been having a rough time and I am amazed that you can walk as you do. I hope your cooler weather will be better for you. All the best xx
I am so happy to meet you. I am in Philadelphia PA USA. I found this site by accident. I am so happy that there are other real people with this lung disease. My Facebook page is Maureen Rauchet Sestito if you ever need to find me. I was diagnosed about a year ago. It is presumed autoimmune mediated from Psoriatic Arthritis. You are so right about people who bring joy into your world. My husband is my champion. I have two children, their spouses and six grandchildren. They have rallied around me. As far as this disease, I follow at Temple Lung Center, which is the big group of lung specialists in this area. And, even so, my Pulmonologist tells me that I am the only one with BO, because it is so rare. So, you and I are special. 😊 I hope we stay connected. Thank you!
Hello Artist 1956,
I recommend joining the British Lung Foundation Forum as well. You will find several more BOOP/COP sufferers. We are certainly not alone. I think the word "RARE" is a misnomer as the illness now being called Cryptogenic Organizing Pneumonia (COP) simply means that the medical fraternity don't know what it is all about except that the lungs have been seriously compromised.
Here, in Australia we have some major environmental problems with polluted soil, waterways and air. This I believe has added to many people's lung damage as we need to eat, breathe and drink to exist. This added to my polluted childhood has certainly landed me where I am today.
I try to grow my own vegetables and fruit wherever possible using organic soil and manures and have eaten a Mediterranean diet, which is delicious, for most of my adult life. Loads of grains and nuts, fruit and vegetables in season, dairy especially yoghurt, fish and meat twice each week. A balanced diet in other words. I have always loved cooking. I gave up drinking alcohol, in my case, wine, several years ago as it simply didn't agree with my gut anymore. Anyway, I am now on 4 types of antibiotic, plus steroids and a betahistine for Meniere's Disease. Drugs into alcohol don't go. None of this is a cure for what we suffer from but it maintains some sort of balance. I give everything my best shot at staying alive.
Hopefully some of this resonates with you.
BOOP-dee-BOOP and COP this lot!
Cheers,
Dee
Thanks for the advice and a smile. Here in the states the research is strongly leaning towards an autoimmune cause. I wouldn’t be surprised if they rename BO as well. It is definitely different than BOOP. I follow the NIH for upcoming research. Things have ramped up because of the association with stem cell transplants. They don’t want to spend a fortune on a transplant and then lose the patient to BO. As always, money talks. You are using such common sense. Keep your energy up with a 😊 smile.
hi I just read all the post and I do not know what this disease Is and I cant tell you anything to help you but I will say a little prayer for you before I go to bed mr/mrsArtist!
Mrs. Artist Thank you!
Hi from a fellow rare breed😊
I was eventually diagnosed last year after having R.A. , which apparently went to affect my lungs. Took ages to diagnose but told this is my condition. I am 50, never smoked and couldn’t walk up my stairs .was very dramatic and frightening.
Did a pulmonary rehabilitation course ( exercise and education) this really improved my understanding and fitness. Then got chest infection and wS floored. So back to starting” little” exercise again .
Nice to meet you and I wish you luck on your journey x
Nice to meet you. Yes, getting the diagnosis was a battle. This is such a rare disease that you have to get to the right doctor before you get the correct attention. It has been an interesting journey. I hope that you will stay well and build up your stamina once again. It is nice to connect with someone who understands.
Hi,
Just to be clear to everyone. I don't have Bronchiolitis Obliterative. I have Asthma and Psoriatic Arthritis which at present has had me off work for a couple of years. However I am interested in lung information as all information helps. To me it's like a puzzle and the more pieces you have the more links you can make and the more chunks of the puzzle you have the closer you are to solving the puzzle. So thank you to everyone as I have found on the health Unlocked website, a marvellous group of people who give me hope, knowledge and the camaraderie of knowing that I am not the only one who has difficulty with arrogant doctors. Yes, I am also lucky to have quite a few great doctors!
So Thank You.
Even though you have asthma, I can still be your friend ❤️😊 although the fact that you have psoriatic arthritis makes me wonder.... make sure they did a high resolution CT of the chest, to make sure.... that being said, let’s have fun with whatever comes our way! You have made me smile, which is a precious gift. I am about to go to the New Jersey seashore with family. There will be 8 kids, ages newborn to thirteen. Six are my grandchildren. And, seven adults. My daughter, who has taken me over completely, has rented an electric sand scooter. I will try to post pictures.
An electric sand scooter! Sounds great.
Yes, I must admit checking out all the details of BO makes me wonder and will make sure that I keep an eye on my lung health which is a good thing. I will remember about the CT.
the electric sand scooter was great. I felt like I was in a Star Wars movie, zipping around. The grandkids loved it. I will try to post pictures.
Would love to see a photo!
I posted pictures of the sand scooter. I hope that you can pick them up on this site.
I posted three pictures of the beach scooter. I wonder if it has to be screened by the moderator before it shows up here. Give it a couple days.
Hello and welcome. I think I’m a zebra too. My diagnosis is ‘Obstructive Airways disease’ and ‘bronchiolitis ‘ secondary to my long-standing Lupus. My guess is that my consultant is sitting on the fence just now hence my slightly vague diagnosis.
I hope you get all the support that you need here.
Glad that you are here! You are so right. Lupus complicates everything. But, it will all sort out in the end. We zebras need to stick together.
Hello All, I cannot figure out how to post something to just the BO/OB section of this site. So I am essentially using the reply to myself, to write an update on life. I have BO/OB and it has made walking and just living difficult. The shortness of breath is pretty noxious. I am just home from a beach trip with my family in Ocean City, New Jersey, USA. It has always been our favorite place to travel to as a family. This year we had 15 people. Eight children from new born to age 13. Seven adults. My kids, their spouses, my grandchildren and most importantly, my husband. My daughter was determined to get me out onto the beach with my grandchildren. She is the type who makes things happen. So, she found a company that rents electric scooters that ride onto sand!! I am going to try to post pictures. The scooter enabled me to drive all the way to the ocean. It looked like a mini Humvee, square shaped, white body and black accents. Sort of like a storm trooper. The kids loved it. If you are going to do a beach trip to the Jersey Shore, please contact me and I will give you the information. It felt so good to be able to do something without the shortness of breath holding me back.
I have Obliterative Bronchiolitis and I'm extra rare because I also have kidney failure too. I'm finding it really hard to find any information about Obliterative Bronchiolitis? Can anyone help?
The NIH website has a link to clinical trials, both old and ongoing. In the discussion of results in their papers, there is information about the pathophysiology of the disease. It is presumed to be an autoimmune disease. There are several websites about Autoimmune diseases. There are autoimmune mediated kidney diseases also. Can you have your pulmonologist or nephrologist... or any ologist ..😊 refer you to an autoimmune specialist, just to get more information so you can tackle it all together? Let me know how you do with the journey. This is a very rare disorder, but we are not alone. ❤️
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