Doctor called early this morning to tell me the team that he presented my results from my recent bronchoscopy with biopsy, couldn't all come to an agreement that what he thinks I have, (Bronchiolitis) is what I have going on ugh the frustration is heavy at this point guys. I've been unable to breathe normally since Oct 6th (yes I remember the DAY all this started) anyhow, his news continued with at this point, he is recommending a surgical biopsy at this point. As I just wrote a couple days ago, during my last procedure my right lung collapsed. He was honest with telling me that it will be collapsing again for sure. Can anyone tell me any other high risk or dangers I should be prepared for? They make it seem like it's easy and common, but I'm scared to death. He also told me that this is the point we are at, to figure out what's going on with me. That if this surgical biopsy doesn't give a answer, he is lost as to what to do next.
I'm now on oxygen at home while active (basically anytime I'm up and moving) because as I've mentioned before my OX numbers drop in the 80's.
I just had my 39th birthday.. And I can honestly say, I pray my 39th year is better than my 38th. All I hear is whatever I'm dealing with, is "rare". Today he told me that with my age, if it ever comes to it, I'd be someone easily considered for a lung transplant. My family couldn't believe without a definite answer to what I "have", he shouldn't even be talking about lung transplant! You guys agree?
You reach a point where you just feel so discouraged
Guess I need advice... Do the surgical biopsy? Hopefully that hold what "rareness" I'm dealing with?
Sorry so long.. Sometimes we just need to vent.
Ps. I live in Michigan USA,
And am currently being seen at university of Michigan hospital..
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Aurorastar_
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The biopsy is to find out what your condition is, I take it. It does sound like bronchiolitis, triggered by the infection last autumn. Similar to me. I know the date mine started. It was after I had PEs after a hip operation. It has taken six years to get to this point because no one has EVER had Obliterative Bronchiolitis as a result of PEs. A lung biopsy was mentioned for me as being the only definitive way of diagnosing OB. But the consultants and I agreed not to go ahead. So I will never know for certain that this is OB, (I am damn sure it is, nothing else fits the symptoms and test results).
Is there any treatment/medication that depends on a diagnosis? If you do not have the biopsy what will happen? You will just have to live with the uncertainty, I suppose. Tricky one.
The decision will have to be yours.
It was much easier for me as I am old (70 soon.) but you are far too young to have to cope with all this.
Thank you Kate, you're right it does sound like bronchiolitis to me also, today doctor said that's usually only seen in transplant patients. He doesn't think that's it. I get frustrated knowing they're not any closer then they were 10 months ago
Not waiting on treatments or meds. Every time I mention some meds (I'm on none) they say "how can we give you something when we don't know what you have?" All they know is that steroids make me feel "normal" again...
May I ask why you decided along with doctors to not go forth with a biopsy?
And yes, if I don't have it, I will just keep getting worse in sure. Because I've given up hope that as fast as this came on, it may go away that fast. My family wants me to pass on it. My doctor said catching things early to slow down worsening systems is the key.
I don't know
Also is OB more obstructive? I keep being told PF test show "restriction"
Sorry not to reply sooner. Time zones! The internet is brilliant but it can't do anything about that. I fell asleep and missed your reply.
I had the same response that OB "only" happens to transplanted lungs. I read up about that as well and found that the reason that OB happens to those lungs is because during the transplant process there has been a disruption to the blood perfusion in the microvascular (tiny blood vessels) and that causes damage to the small airways (bronchioles). It resonated with my situation because when I had the PEs they were described as "extensive, multiple, bilateral," i.e. lots and lots throughout both lungs and when that happens they that get stuck in tiny blood vessels causing a similar disruption. When I read out that relevant paragraph from the research paper to my consultant he was happy to go along with that. So his report mentions OB as a "possibility" several times. (I just wish he had said "probability"!)
The reason I turned the biopsy down was because my two consultants were not keen anyway. There are two types of biopsy: one is done bronchoscopically. Invasive but not surgery. The problem with that is that they cannot be sure of reaching the area of damage and the result can still be inconclusive. The only certain way was open lung biopsy. Which is risky. Also I felt that the problem had been caused byinjury to the lung tissue and by doing more damage the disordered fibrotic healing process would create even more scarring. That's my feeling, not corroborated by the consultants, but they weren't keen anyway.
And, yes, I can see the dilemma about the PFT pattern being restrictive not obstructive. Mine is definitely obstructive. But I believe OB can present with a restrictive pattern. Also it sounds as if there is inflammation going if it is responding to steroids. Steroids make no difference to me and there is no evidence of inflammation. I believe that mine is very largely fibrotic.
There does not seem to be much in the way of treatment for me. Pulmonary Rehabilitation is highly recommended for OB patients. I tried that but had to pull out. (Posted about that a few months ago). I am sure that the reason it did not work out for me was because the vascular problem, CTED, (chronic thromboembolic disease), was causing exercise-induced pulmonary hypertension.
For some lung transplant patients with OB a drug called Azithromycin has been found to help. I have been on it since the autumn but I have to say that it has not helped. Again it seems to help those with inflammation.
Sorry, I am not helping your decision. But there is no point in my not being honest. And I cannot stand bland reassuring noises. The thing I find utterly infuriating is people saying "You look well." Almost as if I am cheating... Grrr....
Do keep in touch. Use the messaging system on this site if you like. But remember the time difference if I do not reply quickly.
Love, buckets of sympathy for your decision.
Kate xxx
You need to see xray or ct image i would ask for em to do dna test see if you have any markers for dieases that could caused it wile waiting for new lungs.
Hi Aurorastar, like you, my condition was undiagnosed for almost 3 years. My CT scan was not 'typical' of IPF (Idiopathic Pulmonary Fibrosis) which was suspected as it had the ground glass markings which can indicate Extrinsic Allergic Alviolitis. My consultant discussed the option of a biopsy with me. He described this as a high risk procedure and was happy to go with my decision not to have the procedure. Eventually, my CT scan showed more indications of IPF and the consultant felt certain enough to say that I did have IPF. I don't feel that it would have made much difference to me being diagnosed earlier as there wasn't any treatment available anyway. However, now that Pirfenidone and Nintedanib are being used to slow the progress of IPF, it might be beneficial to have an earlier diagnosis.
I don't know how expert your doctor is, but it might be worth getting a second opinion from a centre of excellence on lung conditions if there is one you can access. I think this would be a reasonable request before having a biopsy as after all, your doctor did admit he was stumped.
Thank you Helen for your lengthy reply. I really appreciate it.
Do you remember the major risk your doctor told you from the procedure? It's great he didn't push for it with you..
I'm thinking of going back to the Cleveland Clinic for a second piece of advice. As having this done, is something my family is very against. Mostly because a simple Bronchoscopy caused right lung collapse. I need to be clear 100% this is what I need...
I know it's late there, hope you're sleeping like the queen! 👑
Hi Amy, I didn't want to alarm you in my first post, but like you, I also asked what high risk meant. My consultant explained that there was a risk of dying during or after the operation. I didn't ask how high the risk was as at that point I made my mind up that I was not going to have the procedure. I don't mean to frighten you but would suggest a second opinion and a discussion with your consultant about the risks involved in doing a biopsy on lungs which may already be damaged.
Take Care,
Helen
Beautiful photographs Aurorastar.............Carry on venting. You really are going through the mill for someone so young.
Being told that in all likelihood when your next biopsy is being done you can expect a collapse of the lung is awful to contemplate. There has to be an answer and alternative surely. Whatever you decide is best, and it is a very difficult decision, I hope the future will be very bright. I wish I could help.
Hello Aurorastar. I'm so sorry about your condition. I am 42 and have Bronchiolitis Obliterans or Constrictive Bronchiolitis. It is a very rare condition. Is this what they think you have?
They would not do a surgical biopsy on me because they were afraid I would not handle the anaesthetic. There would have been a risk of me not waking up. So they made their judgment on my deteriorating spirometer results and scans. They have also told me I will most likely need a lung transplant in future. The doctors I've seen say I'm young and should definitely consider the transplant option if need be.
I know it's terribly frightening. The first thing families want to do is to hope that it's not like the doctors say. You can always consider a second opinion. I went for second and third opinions.
You'll get lots of people trying to suggest all.kinds of remedies and asking how you got that disease. It can be tiring so surround yourself with people who won't stress you out. I found even really good , well intending friends made suggestions that just made me want to hide under the bed covers and never emerge.
I know this is a really difficult time but please know you are not alone. We are all rooting for you and if you ever need to chat you can send me a message.
Here is where I get very confused. Doctor originally called me on Tuesday and told me my results were in, and it's looking like "Bronchiolitis" he never said BO. And when I mentioned that, he said "No, that's different". He than explained he was presenting my case to a medical board to see if they agree. That took me to the call on Wednesday stating that they all can't agree that I, in fact have bronchiolitis. And a surgical biopsy would be what holds our definite answer, if we were getting one. My family doesn't understand how he can call me, tell me this is what "it is", and than retract and say "maybe not"...
May I ask, because what you said is "My" fear, why were they worried you wouldn't wake up? Or why did they tell you? This is my fear very much, and you aren't much older than me...
Thank you for the offer, I'm sure I will be contacting you as I will have many questions!
Hello Amy. It was quite chaotic for me too but for one defining factor, the fact that I have Rheumathoid Arthritis. People with RA sometimes get lung problems and one of those is BO. So, I guess it was a bit more clear cut for me.
They did consider the biopsy but my lung test showed a vital capacity of 0.7 . They would only put a patient under general anaesthesia if the patient had a capacity of at least 1.0. And even then it is risky they said. I am bad at explaining this. But they were concerned about respitory failure . Last summer I had a septoplasty , correction of a bone in my nose to improve drainage because I had bad post nasal drip. They wouldn't put me under so I did it under general. All my doctors seemed to be of the same opinion.
I suggest you and your family find out exactly what the risks are. My case and yours could be totally different. If you did find out a name for what you have , would that outweigh the risks of a biopsy?
I am sorry this has happened to you. You're in my thoughts.
I am sorry to say I am at the point that they are not 100% sure what to do with me as they will not look at the bigger picture. I have multi-conditions and that is what I would ask your doctor to look at to see if there is another condition compounding the breathlessness. I was tested at rest all of the time and they did not understand why I would tell them of breathlessness when doing anything as they only saw a fair O2 reading while I was rested. Also most specialist are now to specialised in their own field and do not take another condition into their thinking. I have had many blame the other condition they are not dealing with?
It took a Doctor to watch me move to be tested and back for him to understand what goes on with me. I am fine doing nothing! But I cannot just do nothing to keep going?
I would make a list of all your thoughts and go though them for an answer with your doctor on the next step (If needed)
Same as you, my OX levels drop when up moving. They're doing a hallwalk with O2 in August. So maybe that's like what you're talking about? They will be looking at when I am at rest, and when I'm up moving..
You're right about the looking out of the box thing, I swear sometimes it seems like if it's not right in front of their face, they're walking around it!
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ugh the frustration is heavy at this point guys. I've been unable to breathe normally since Oct 6th (yes I remember the DAY all this started) anyhow, his news continued with at this point, he is recommending a surgical biopsy at this point. As I just wrote a couple days ago, during my last procedure my right lung collapsed. He was honest with telling me that it will be collapsing again for sure. Can anyone tell me any other high risk or dangers I should be prepared for? They make it seem like it's easy and common, but I'm scared to death. He also told me that this is the point we are at, to figure out what's going on with me. That if this surgical biopsy doesn't give a answer, he is lost as to what to do next. 
Time taken for Sputum test results
Specialist results.
result of consultant appointment 
I’m so confused! What do my results mean. 
