Bronchoscopy

[Psyborg]

So I'm having a Bronch tomorrow to try to figure out what's up down in my lungs. I'm starting to get nervous about it. The tracheal scope was pretty uncomfortable, I can't imagine going deeper being pleasant. Am I worrying about nothing here?

That and I'm preoccupied with conflicting emotions. I hope they can see what is wrong in my lung(s), and at the same time a bit worried that there is some sort of damage that will necessitate more issues. Or on the flip side that the damage won't be anything they would do anything about and I just have to live with not being able to breath deeply without weezing. I'm a dork...I know...a lot of you go through much worse so I apologize in advance for whining :)

[renidrag]

Bob: I hope you get this before you go, I have had two of them and really not a big deal. They spray a mist into your throat to numb it so you don't feel any thing. You have to sort of be aware a little bit during the procedure, but they will also sort of knock you out. No residual pain or anything after, just a little hoarse. Oh and you sit up during the procedure.
Dale

[Brooke]

I have had about 4 or 5 bronchs. From what I remember, I was laying down for the procedure.
I know for one of them for sure, I didn't want the breathing tube in. I can't remember why, I just remember crying before the bronch (I always do) and I told the doc I don't want them to do any lasering and I don't want a breathing tube put in. I just wanted them to take a look. And the doc said, sure no problem whatever you want to do. Turned out, it looked good down there and they didn't even need to laser any scar tissue.
I am wondering if it might be better with a breathing tube, because I think they can give you stronger meds to knock you out a little more if needed. One of the bronchs I had, I didn't like at all, I just remember tapping on my IV on my wrist to have the doc give me more meds because it was really uncomfortable. I'm not trying to scare you, just telling my experience.
I'm sure you will be just fine. I would not be scared to have another one, I have had so many and they do them all of the time.

[Psyborg]

Thanks folks :) Nice to know what it's like in advance a little bit.

[Sangye]

I was supposed to be pretty knocked out for mine but I wasn't. They fixed it.

As far as your hopes and fears right now, just try to stay in the moment. I know how hard it is! But like you said we have no idea what to hope for and our fears may never happen. :hug2:

[Psyborg]

Gotta love a disease where you don't know whether to hope for something obvious or not. :p It is really aggravating to know something isn't right, but nobody can find it.

I had kind of a bad night last night sleeping, could only get comfortable on my sore side. Consequently I didn't sleep well. Probably why I'm overthinking it :)

[Jack]

I could remember nothing at all about mine, just like having a general anaesthetic.

[Sangye]

Every thought we have is a hope or fear. It's not unique to Wegs but having Wegs makes it easier to see. It's actually a very useful aspect of Wegs--seeing how much we all cling to future unknowns.

[drz]

I don't remember any discomfort from mine and remember being fascinated by what the my lungs looked like on the inside. I could watch what the camera showed on the screen while they were exploring. They were looking for some bleeding that they could cauterize but couldn't find any hot spots. It reminded me of those science fiction films where micro people are surfing through the human body to find a problem they can fix.

[pberggren1]

I had a bronch back in Feb. It was necessary with the lung infection I have because they were not sure if Wegs was creeping up as well. As it turned out I needed the bronch as it showed active wegs in the lungs. I was out most of it. pretty drugged up. I had a pretty bad reaction to is afterwards where I had bad chest pains but other than that it went OK.

[Sangye]

Best of luck tomorrow, Bob! :smile1:

[drz]

So how did it go?
How are you feeling now?

[Psyborg]

Well...it wasn't that bad. I don't remember anything past the versed. Took longer to get alert after the procedure than i usually do to come out of general anesthetic.

I haven't heard Dr Villa Forte's thoughts yet, but the finding's were not good. Apparently the Wegs attacked my cartilage in my lefti bronchial tube in two places. What is happening is my heart actually collapsing the bronchial tube. So when I get my heart rate up its causing the tube to spasm. Or when I sleep on the other positions the normal movement of the heart cause constriction.

So I know what's up now, but not sure where it leaves me. It's kind of a relief to know what's going on, but now I'm not sure if they can actually do anything about it. I don't believe i've heard anyone else on here mention this, but I had focused on TS for so long I may have just missed it.

[pberggren1]

This sucks Bob. Did they dx this all with just the bronch or was there a CT scan of the chest involved as well. I have never heard of this before.

[Jack]

That is the first I have heard of "complicated" things going wrong with the throat like that. Makes me a little worried about my own swallowing and breathing problems.

I hope they can sort something out to fix it for you. Just one thing after another isn't it?

[Psyborg]

The DX was a result of the bronchoscopy. It was right where I kept telling them I felt something not right :p The CT scan never showed more than a slight thickening, which given what they said is going on doesn't actually surprise me, its not a granuloma so it would be hard to see I'd think.

It does sure seem like one thing after another. I was pretty loopy with the Morphine and didn't ask many questions. I'm supposed to go back in a few weeks for an interventional Bronchoscopy, but I don't know what that will entail until I talk to Dr Villa Forte. I know stints were mentioned, but at the same time I know our bodies aren't keen on foreign bodies in them.

[Sangye]

Oh, man. I have not heard of a complication like that. I'm so sorry. Really glad you're seeing a Wegs specialist, though. They'll know the best options.

It's a good reminder to be persistent with our docs if we feel something isn't right. Most diagnostic tests have limitations and no one test can show all the answers.

[Psyborg]

Doing a little research I found Relapsing Polychondritis...it is a secondary autoimmune disease often associated with other AI diseases. I'm suspicious. Because that almost more accurately describes my tracheal issues.

[BrianR]

Sorry to hear about this Bob. The uncertainty of "what's next" must be vey unsettling. I would think the surgeons will most certainly have procedures and options for "beefing up" the B tube. Please keep us informed of what happens next and think of how much better you'll feel once they treat this.

[Sangye]

Doing a little research I found Relapsing Polychondritis...it is a secondary autoimmune disease often associated with other AI diseases. I'm suspicious. Because that almost more accurately describes my tracheal issues.


RP can be a lot like Wegs. Your mind can go wild worrying about this until your next appt. Make a note of it on your list of things to ask and then try to forget about it.

[Psyborg]

Good idea :) Going to try to put it out of my head until I hear something solid.

[Sangye]

It's a trick that has worked for me. Someone told me once (a therapist, maybe?) that our subconscious minds will keep nagging us in the form of worry because it's their way of ringing the alarm bell. Like "Are you taking this threat seriously?? Are you? Are you?" If you write it down the subconscious sees that you're taking care of it, and it leaves you alone! :biggrin1:

[LisaMarie]

I was told stents were not an option...I have narrowing in my bronchiloes due to inflammation...I was told steroid injects into the tissue to slow the process...there is no such thing as a brochilo transplant...so if you get stents let me know...I go back to Mayo in August and only have 5 lonely B cells that are recking havic .....the monster is waking up...just waiting on the right number before I get Rituxan again...

[Psyborg]

That was what I figured...I can't imagine that stents would be well tolerated.

[Chris G]

Sorry to hear about this strange and freightening complication. I'm glad you seem to be with good doctors......I know they must be if Sangye approves. Easy to say.......but try not to worry too much about it. Let the docs do their jobs & figure this thing out.

[Psyborg]

I'm still impatient as all get out. :) Every time I find out that something new is wrong I can't stand it until they get me some info on it.

[Sangye]

I can sure relate. Today--as with countless other days since the Wegs dog came to live with me-- the theme of my visit with my therapist was "Dealing with uncertainty." It's a tough one. :rolleyes1:

[Psyborg]

I go back in on Friday the 5th to have another Bronch. This time they will be doing a balloon expansion and steroid injection at the sites. They might do stents if the sites do not stay open with the balloon expansion. I'm a bit skeptical that it will stay open give the damaged cartilage, but they are the experts lol.

Also got a biopsy of the rash done today, had a fresh patch break out in a noticable spot and called the Dermatologist.

[Brooke]

Glad to hear the bronch went well :)

[Psyborg]

Bronch two down. It ended up with injections of sterois in TS area of throat and in the worse of the two areas in the Bronchial tubes.

I have one of top Wegs pulmonologists at CC...so that is good. The bad is that I have Malacia of the Bronch tubes. Basically the disease destroyed sever chunks of cartilage around my Bronchial tubes. Basically the jist of it is they really can't do anything for it. They can try stints, but the strongly advise against it because it almost universally leads to stenosis at both ends of the stint with Wegs. So when you get this with wegs you just have to live with it. Stupid disease :predrage:

If it gets bad enough (which I would think only occurs if I'm flaring) they cannot do much for the Bronchial tubes. In remission it should (in theory) not be continuing to get worse.

The weirdest thing is I though they were going to dialate the Bronchs, but I guess that is not something that is done. Which makes sense...I was wondering what possible good that could even do.

[pberggren1]

This sure sucks for you Bob. Are you short of breath most of the time?

[Sangye]

Oh man, Bob. I am so sorry. If I'm understanding it, the bronchial tubes have lost their support so they collapse in on themselves. Dilation doesn't make sense, like you said.

I think this is one of those things that technology will help at some point, like how they're growing organs now. Hoping you'll get some help soon.

[Psyborg]

I'm thankfully not short of breath all the time. The stenosis is about 50%, so the issue only occurs when I get breathing hard or my hard starts beating harder it collapses the airway on the left side. I also have issues with sleeping as I think the shifting of my internal organs causes it to partial collapse in all but one sleeping position. That wasn't a problem until I decided to break a rib over there :P

I'm trying to keep things in perspective here. The involvement is nothing compared to what some folks are going through here. The only really sad part is that it's pretty much irreparable damage as of right now. You are right about treatment Sangye, I heard a story the other day about them growing cloned cartilage over a lattice-work that they wash away, so who knows how soon that might be ready.

I think that the big thing is I'm going to have to be as vigilant as possible to a avoid flairs. Obviously that's easier said than done and I know that no matter what it's always a potential issue.

[Psyborg]

This is going to sound odd...but can you be still having active Wegs without many obvious symptoms. What's bugging me is this continue rash. The one today is extremely bright red on my right collarbone. No pain, no itching (though I do have slight itching elsewhere).

I have no pain and no real other symptoms. They biopsied the rash in a different spot but found no signs of vasculitis, but I also know that biopsies seem pretty unreliable. Previously I never really worried much about smouldering symptoms, but now that I found it its eating cartilage I'm more concerned as that can't really be fixed. I also have occasional sharp pains in the area I have the TS. I did put a call into my doctor, but I'm not sure if I'm worrying unnecessarily as I really have none of the original symptoms at this point other than the ongoing cough.

[Sangye]

I think the Wegs dog can do anything it wants. It doesn't always seem to be noticeable.

[Psyborg]

I think that I'm maybe been in a bit of denial here. I'm getting more symptoms over time. I've been struggling with fatigue for several weeks now, and today I'mve got the stiff achy joints going on in my right hand and wrist and my left knee. What concerns me more is I seem to have a bit of a stabbing pain in the trachea and the chest (on my good side) on and off. Waiting to hear back from the doctor to see if they want to try RTX or not.

[Sangye]

Yup, that denial is a stinker. The only way I can catch those trends is with my daily log.

Like you, the rash typically precedes my other symptoms returning. When I see more than an occasional red dot I know it's coming. So glad you're in touch with your doctor, Bob.

[Psyborg]

I am pretty sure I'm working my way into a flare here. I've passed that along today to the doctor. Suffering through pretty significant fatigue again. I think I slept about 30 hours over the weekend. Plus starting to get low level pain and the "hot" joint feeling I had originally. Not to mention the dizziness and the headaches. and inability to think straight :p.

Plus I decided I should help my dad move some wood on the weekend and got a pretty sharp pain right below my vocal cord when I was straining to lift the first board. Not sure that is related, but I'm going to guess it is, too close to the stenosis to be coincidence I'd think.

Then again I don't seem nearly as sick as last year (though maybe that's the pred covering things maybe?)...I'm a bit confused right now.

[Sangye]

Ho boy, I hope your doc gets on this quickly Bob. You don't want to wait until you're as sick as last year. The pred is no doubt keeping the flames down a bit but as you know it won't be strong enough to contain a flare.

[BrianR]

I'm sticking my nose into this to reinforce what Sangye has said. Go with your gut instinct and get your doctor on it pronto. Squash it.

[Psyborg]

I promise I called :)

The worst of it for me when I'm working is that my brain doesn't seem to function regularly. I'm a programmer, and thinking through logic gets really hard all the sudden.

[Chris G]

I know what you mean about the brain function Bob. I'm in accounting, and it's murder on me to try to focus when flaring (and while on mtx for that matter).

I'm with Saygye & Brian.......squash it quickly!! I hope your doc gets back to you soon.

[Psyborg]

She got back to me this afternoon. Back up to 40mg of Pred (BOOO!) and they have hit the Insurance company with the proposed 2 infusion protocol. Evidently Insurance is more inclined to cover 2 over 4 infusions (though I think the amount of RTX is the same). They said that will be a few days.

Apparently when they told me my Bronchial tubes were inflamed that was short hand for "You have active wegs going"...which I didn't know.

On the positive side I think I can now comprehend the smoldering Wegs thing :). This is definitely not as intense as my original flare, but not sure how much I can chalk that up to the current dose of Pred making the flare take a long time to show up.

I'm actually a programmer for our financial systems....so I work with our accountants every day :)

[BrianR]

I'm actually a programmer for our financial systems....so I work with our accountants every day :)[/QUOTE]

Oh man! As if WG wasn't bad enough. (Sorry!!! I had to!!!)

[Chris G]

I'm actually a programmer for our financial systems....so I work with our accountants every day :)

[/QUOTE]Oh man! As if WG wasn't bad enough. (Sorry!!! I had to!!!)[/QUOTE]

Agreed.

[Sangye]

Bob, I didn't have any trouble getting approved for 4 infusions and that was before it was FDA-approved for Wegs. I hope your doc will prescribe what you need, not what is easiest to get approved.