Would like to speak to anyone who has obliterative broncholitis

[loza1]

Hi recently diagnosed with obliterative broncholitis and not much information on it. No cause as yet found. Does anyone else have this ?

[Caspiana]

Hello Ioza, 😊👋

I do. Mine is a manifestation of Rheumatoid arthritis which I have had for many years. Rather than waffle on about myself. Please ask me what you want to know and I will reply the best I can.

Cas xx 🌿

[loza1 in reply to Caspiana]

Hi Thanks for replying, they are not sure the reason, possibly infection however have taken bloods to see if it is because of RA, although have no RA symptoms. How longbhave you had it for ?

[Caspiana in reply to loza1]

Hello Ioza,

Like Kate I am intrigued as to how they managed to diagnose you with a CT scan. Under normal circumstances it is nigh impossible to see the damage caused by this condition on an x-ray or a CT scan. The most positive way is through a lung biopsy.

I have had it for almost eight years now. As you know it is progressive and I was told I need a lung transplant if I was to see another year. Having said that, some people will go on without too much progression . It just depends . I had a single lung transplant in 2019 so I still have it in my left lung although on the whole I am doing well 😊.

The problem is inhalers etc. don't help us an awful lot. Have you had a spirometry test? I know this is very frightening, but you are not alone. Welcome to the forum, I'm glad you found us, but I wish it was under different circumstances. xx 🙋🐕

[Katinka46]

Hello loza1Welcome to this forum. I have it as a result of of vascular damage. Lots of questions for you: how did you get it, how and who diagnosed it?

There are a few here with it. It is a rare small airways disease.

I hope you are well supported by family, friends and the medical community.

All the best

Kate xx

P.S. I see our lovely Caspiana has replied.

[loza1 in reply to Katinka46]

HiThanks for getting back to me. They are unsure reason for it, think might of been infection although I have never been unwell. Noticed that I was more breathless doing exercise prior to lockdown. Had to wait over 1 year for pfts then recently had ct scan as a result of poor pfts. CT showed this. Not sure what to expect, coursebof steriods didnt help. How long have you had it for and how did you get it?

[Katinka46 in reply to loza1]

What sort of CT scan was it? A high resolution one? I am intrigued as it is a condition that isn’t very easily diagnosed. Who diagnosed it? If you look at my profile you will see a little of my history. I assume you are seeing a consultant. My diagnosis took eight years and was finally made by a consultant at the Royal Brompton Hospital in London. We are in Yorkshire so it was quite a trek!! My consultant is in Leeds. He asked RBH for another opinion. We did suspect OB and they confirmed it. If it is the neutrophilic phenotype then there are possibilities of medication. Mine looks like the fibrotic phenotype and there are fewer treatment options. I think the reason mine took so long to diagnose was that no one would believe the cause. A lot of head scratching and scepticism. I had extensive, multiple pulmonary emboli after a hip replacement operation in January 2010. The airways problem happened very soon after. I am sure the PEs caused it. It is unusual as it is a sudden onset condition and most lung diseases are not.

I am very intrigued by what is happening to post-Covid patients who also have a lot of small PEs and then develop airways problems.

My consultant is clinical lead on the Covid wards so we are having an interesting email discussion about it.

Sorry about the long reply. It is a subject close to my heart, literally!

Kate x

[loza1 in reply to Katinka46]

Hi KateIt was radiographer who diagnosed from CT, he was a chest radiographer and consultant went on this diagnosis. He originally thought COPD ( although non smoker).

I have had symptoms for a few years so luke you say Kate normally quick deterioration.

Not sure if I should ask for second opinion or biopsy to confirm. Havent heard of cryobiopsy Mike. Do most places do this ? Appretiate all your views.

[MikeJM]

Did anyone start having symptoms and have relatively normal PFTs when their symptoms began? I have yet to get a diagnosis. My PFT #'s indicate small airways disease, but they are still very good overall. I have 110% FEV1. DLCO is 111%. But FEV1/FVC is 69 and RV is 155%. They tried giving me asthma medication for 10 months without even the slightest help. I have had some minor improvement on high dose prednisone.

I have heard that HRCT with expiration can often show mosaic attenuation, which helps, but doesn't diagnose. Regular CT is typically pointless in trying to diagnose this.

I have also read about cryobiopsy. It is a far less invasive procedure than SLB. Basically they go through your nose and into your airways, very similar to a transbronchial biopsy. They can get good results this way and it's perfectly safe (i.e., they send you home that day with no restrictions).

Has anyone heard of cryobiopsy for this diagnosis?

[Katinka46 in reply to MikeJM]

Apologies Mike, I have only just read your post from the other day. Did you mean Constrictive Bronchiolitis? That is the same as Obliterative Bronchiolitis and Bronchiolitis Obliterans. Why this poor Zebra (rare diseases) should have so many names I haven’t a clue. And not to be confused with Bronchiolitis Obliterans Organising Pneumonia (BOOP) which is a different disease altogether!! Now we have got that clear, (come on you lot at the back, concentrate, it’s not that difficult) can you, Mike, tell us a little bit about your history? There are only a few of us with it, (CB,OB,BO) on the forum so we like and need to share what we have experienced and what we have found out about it. If I had made the connection when I saw your post I would have responded.

Looking forward to hearing your story if you feel like telling us.

Kate

[MikeJM in reply to Katinka46]

I am in my 30's. Was completely healthy. I had exposure to some chemicals in May 2020, although I had no symptoms at all at that time. I also had sever GERD with Barretts esophagus. But I had the reflux addressed with a nissen fundoplication surgery 10 weeks ago. It did not help the shortness of breath. I didn't start having noticeable symptoms until October 2020, which was mostly a dry cough and a chesty feel. However, there was some slight shortness of breath with running a few months before symptoms. Just a very slight shortness of breath. In December, I really started noticing the shortness of breath. Up to that point, it wasn't even noticeable. Then it hit me very hard one morning where I wasn't able to reach the top of my breath at all. I went to the ER in a panic. They did a CT, it found nothing. I saw a pulm. I had a PFT. It was read as "normal" but I did have the stats in the previous post. They told me it was asthma. I took prednisone and after 10 days in December, symptoms mostly cleared up for the entire month of January, just some mild shortness of breath here and there, and a chesty, wet mucous feeling, but almost didn't notice. Then the breathing trouble came raging back in February. I have been status quo ever since, cannot reach the top of my breath, worse with exertion.

I feel better when I lie down at night. I feel best right before I get out of bed in the morning. If I laid in bed all day, I would breathe fine. As soon as I get up and moving, I cannot reach the top of my breath. I have been to many pulms. All have said my PFTs look good enough. Although some acknowledge the mild obstruction FEV1/FVC at 69. Residual volume at 151%. My DLCO was 126% in December. I have had 3 DLCO tests. It is now at 109%. I have been told this doesn't matter because it's over 100%, but there seems a downward trend. One of my pulms feels I have small airways disease, but won't help me discover what it is. She just prescribes more asthma medication, which doesn;t help in any way.

I continue to exercise. My abnormalities on PFT are very subtle. I did a CPET. My Vo2 max is 48, which is 114% predicted. However, I was very very fit before becoming ill so I don't know how much stake to place in that. I feel terrible when I exercise, but I am 38 and was a fitness fanatic, so my body is overall still in great shape.

My symptoms are the same, every day. Tough to reach the top of my breath if I do anything at all. Often it's a problem even when sitting. I feel a lot of air in my chest. I have a dull chest pain as well. Lately, I have had trouble swallowing.

Can I ask if any of you experience any of the following...

1. Trouble swallowing spit

2. Post nasal drip

3. Feel great when you wake up in the morning before getting out of bed, but then short of breath the rest of the day

4. Tight, dull pain in chest

5. Feel like your chest is full of air at times, especially with activity

6. Have an air hunger that leads to a feeling like you need to yawn, but it doesn't help

7. Had fume exposure and then a late onset (months later) symptom of shortness of breath.

8. Had severe GERD/aspiration

9. Feel short of breath, even when at rest

10. Had normal PFTs at first, but declined over time.

Thank you so much for any feedback you could provide!!

[Katinka46 in reply to MikeJM]

Thank you very much for all that, Mike. I guess you are in the US? ER and pulmonologist are a dead giveaway. We have A&E and respiratory consultants. No interns, residents and attending…. But I digress. CB, (OB,BO) are sudden onset, practically every other lung disease starts slowly and can take years to become noticeable. Mine happened quickly and it was confusing as I did have very well controlled asthma but having had that for half a century I knew it wasn’t that. Took some persuasion to wean the doctors of it, though. But I am a persistent, cantankerous old bat. Nonetheless it took eight years to diagnose and a trip to London for this Yorkshire country bumpkin. We don’t hop around on internal flights like you lot. Keep insisting with your medical team, you know your body and as you say being fit may upset the interpretation of your results.

Keep in touch, there is something going on that needs investigation.

Kate

[loza1 in reply to Katinka46]

Hi KateCan I ask, were you symptomatic for 8 years ? Are things stable for you at the moment?

Im not really.sure what to expect.

Thanks

Lorns

[Katinka46 in reply to loza1]

Yes. I had my hip operation January 2010 and a few days later I was breathless and felt slightly faint going up stairs and I knew it wasn’t asthma which I had had since I was seven. I felt as if part of my lungs were not working. A GP sent me into our local hospital and I was — eventually! — diagnosed with extensive, multiple, bilateral PEs. I have been breathless ever since. After four years I was diagnosed with chronic thromboembolic disease, (l’d worked that one out six months after the acute event) but it was also obvious that there was an airway disease as well and that was finally diagnosed as OB in December 2017. My symptoms have slowly worsened. My oxygen sats are more or less OK so I am not on oxygen. But I am breathless all the time and the slightest exertion makes it worse. If you are interested in the whole saga I have written it up, and a professor in Sheffield asked me to write about patient/doctor relationships in complex cases. So there is that version as well.

K xx

[Katinka46 in reply to MikeJM]

P.S. We do have interns, residents and attendings, we just have different names for them.

[Carnival567]

I have OB in my case probably caused by the drugs I was prescribed by my cardiologist for atrial fibrillation. They were having trouble treating AF but my cardiologist was reluctant to give me the recognised drug amiodarone because I already have bronchiectasis and amiodarone can affect the lungs. After 3 months I was changed to dronedarone which is supposed to be safer. Then I moved to Bristol and the respiratory doctor took me off both. I now have pulmonary fibrosis which is progressing and am on oxygen 24/7. I have heart problems as well which doesn’t help. I am 78.

[loza1 in reply to Carnival567]

HiSorry to hear , sounds like a few things are the cause of this awful condition. Thanks for sharing your story. Best Wishes

[Maricopa in reply to Carnival567]

This a tad off subject. You mentioned the drug amiodarone. I have a friend who was pretty active and seemed healthy until he was prescribed amiodarone! It’s been all downhill since. Lovely kind man. Sad

[Carnival567]

Yes, it affected my eyesight too.