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Psyborg
05-20-2013, 10:36 PM
So following this last cold I'm having issues with my breathing again. I keep getting mucus buildup in my bad Bronchial tubes. I'm 95% sure that the lung itself is clear now, and this is coming from that area. Basically every 5-10 minutes I'll start weezing again until I cough up some white/clear mucus and then I'm fine again for a bit. My gut tells me the wegs is active in that area again, but it might just be irritation caused by the cold in theory. I'm currently in a "minor" flare that appears to be controlled by my increased Prednisone. Just wondering what other's experience with airways was if this is that or just the leftovers of the cold and I'm taking forever to kick the rest of the issue.

Alysia
05-20-2013, 10:54 PM
Hi Bob,
after a cold and when Im coughing, my lungs doc prescribe to me also Azenil (Zeto) or Roxo (usually for one week). there were times when it helps. and others that not. I also used Sertide Discus but became alergic to it.

drz
05-20-2013, 11:05 PM
The excess mucous is one of the residual symptoms that is usually present. Mine gets worse at times and becomes a real problem if I get a cold or something worse like bronchitis or sinus infections. I too view these times as minor flares since my inflammation markers increase along with other residual symptoms like increase bleeding in nasal area, more joint pain and fatigue but my treating doctors don't regard it as a serious flares unless it starts attacking my lungs or kidneys again and requires a much more aggressive treatment regime. Their main concern is that I might get pneumonia which is serious, when you have lung damage already and broken immune system, since once we are diagnosed and under some treatment for Wegs, we are more likely to actually die from an infection than organ failure from the Wegs flaring.

This winter I knew some healthier people who also took weeks to shake their colds or respiratory problems so it is not unusual for us to take a longer time too. I found increasing my sinus rinses and adding a steroid nasal spray helped me a bit along with sucking on lot of cough drops or hard candy. When it gets better i cough less, but there is still excess mucous draining down my throat from my sinuses that I have to clear frequently or it affects my voice or makes me cough or choke even when I am considered in a good stable drug induced remission.

Psyborg
05-21-2013, 12:06 AM
Well that's kind of a relief, I think it is indeed just the cold holding on. It bugs me most when I'm sleeping...and I can't use the CPAP because it seems to push the mucus right back down my airway. Might try again tonight.

marylz
05-21-2013, 04:58 AM
Hope it resolves itself soon. I hate not being able to sleep! (not breathing is a concern, too!:wink1:)

Psyborg
05-21-2013, 05:47 AM
Dr VF did call me back today and we suspect it might be cold symptoms hanging around due to Prednisone dosage...starting to reduce again tomorrow.

It seems to get worse as the day goes on. Was pretty clear this morning, but I've been coughing more this afternoon.

pberggren1
05-21-2013, 09:03 AM
I always cough up stuff every day due to the cavitating nodules in the lungs.

Psyborg
02-26-2014, 02:45 AM
My breathing took a nose dive with my last flare...so back in for another Bronch for a look around. Feeling much better otherwise after RTX, but get winded on the stupid stairs again. Not as bad as some folks have it I don't think, but still aggravating. See my Wegs doc again in Mid March so just biding time. Feel ready to start reducing pred from 10mg, but she wants me to wait.

kieshara
02-27-2014, 12:54 AM
Hi Psyborg i am so short of breath to, mine happens the moment i put my feet on the floor to do something.Walk washing shower, then when i rest a while usualy sitting down and do needlework i feel fine. After the hospital 2 weeks ago and all the test neg, i went back to my G>P and told him that i dont look forward to this kind of life, he spoke to the ENT again and they decided to give me an inhaler with cortisone and antiinflam to use three times a day, I went and got one and used it , I felt relieve inmediately, and was so glad, but the next day and now into the 7th day no relieve. I read the pamflet said about 4 days I am still pos that it might help. My pred is down to 10mg again and now the arthiritis is worse again, you just cant win. I have still another option. We live at the sea very hot and humid. My kids have landed this morning from the U.K permantly back and we are going to them in a week or so, there it is inland hot dry, i might just breath easy there who knows. I never get colds or flu, i always say i only get illnesses that stay for years no 7 day bugs for me. I found it difficult sometimes when i dont feel well, is it the Weggs or just something passing, cant run to Dr with little things, or that is what i sometimes think. I seem to have forever a septic focus, my eyes are a big problem as the Wegg damaged my tearducts, then my lower eyelashes decide to grow inwards, then it is a toenail suddenly for no reason, what an irratation, at the moment i have lower abdominal cramps coming and going for no reason. Hang in there Ellen

Psyborg
03-06-2014, 12:11 AM
I'm kind of miserable today. They did the Bronch yesterday and used Cryo ablation on some scar tissue that was causing shortness of breath. But of course that whole area is inflamed today so hard to breath on the left side today. Was wheezing so bad in my sleep that the noise woke me up. They told me I'd have a couple days of worse breathing...so nothing unexpected, but man the breathing sucks today :)

Alysia
03-06-2014, 03:43 AM
I'm kind of miserable today. They did the Bronch yesterday and used Cryo ablation on some scar tissue that was causing shortness of breath. But of course that whole area is inflamed today so hard to breath on the left side today. Was wheezing so bad in my sleep that the noise woke me up. They told me I'd have a couple days of worse breathing...so nothing unexpected, but man the breathing sucks today :)

I am sorry Bob. I hope you will breath better soon :hug1:
can I ask, please, what is "cryo ablation" ?

Psyborg
03-06-2014, 04:42 AM
Basically they froze scar tissue to get it to come free from the airway.

pberggren1
03-06-2014, 04:50 AM
I'm kind of miserable today. They did the Bronch yesterday and used Cryo ablation on some scar tissue that was causing shortness of breath. But of course that whole area is inflamed today so hard to breath on the left side today. Was wheezing so bad in my sleep that the noise woke me up. They told me I'd have a couple days of worse breathing...so nothing unexpected, but man the breathing sucks today :)

Bob, what is Cryo ablation? My scar tissue is mostly in the left lung in the second and third branches.

Psyborg
03-06-2014, 04:55 AM
See above :)

My lung issue was all scar tissue in the left main bronch. On the bright side he said the damage was all older so nothing new from this latest round. Which I find a little weird as I had a bunch of breathing problems lately, but maybe I'm super-sensitive to anything in that airway now.

pberggren1
03-06-2014, 04:58 AM
So after freezing they cut the scar tissue out?

Psyborg
03-06-2014, 05:16 AM
No, as i understand it the tissue comes away from the Bronch similar to frostbite on fingers. They said they use this because laser ablation causes more damage and scarring in the long run with Wegs.

pberggren1
03-06-2014, 05:19 AM
I'm gonna have to ask my new doc about this then.

Psyborg
03-07-2014, 01:57 PM
Had a rough day this morning. Woke up and had lost all airway to my left side. Lung had a partial collapse so got to go back in for the second Bronch in three days. Mucus plug at the inflamation was the culprit. Feel a bunch better after they cleared it.

pberggren1
03-07-2014, 02:02 PM
Yikes Bob.....:sad: How the heck did the doc get it out? Do you have a lot of mucus that comes up each day? Do you find it hard to cough it up? I find it hard to cough up the mucus each day. Today was a hard day. Spent 4 hours nebulizing saline and coughing trying to get out mucus plugs. I think most of my plugs are in the larynx and sit at the sides of the vocal cords, but I am not certain about this. If that was the case then they would be formed, most likely, from the mucus from the post nasal drip. I think I also get plugs from the lungs as well Because sometimes I feel something big coming up then when it hits the larynx I can barley breath, then it comes up and is a large piece the size of a marble or bigger.

Psyborg
03-07-2014, 10:56 PM
I actually asked the Pulmy about the mucus thing. He said two things. 1) Inflamation can cause extra mucus, so that probably impacts us when flaring. 2) We constantly produce mucus in our lungs. We have cilia in our lungs that actively push the mucus up and out. But if you get airway damage the cilia get destroyed and mucus stops it's upward path and accumulates necessitating the coughing to clear it. That cleared up a ton for me ;)

They had to go back in with another bronchoscopy. They tried to clear it with suction but that didn't work, they ended up using the cryo tool and getting it to freeze to it and yanked it out. They gave me less drugs this time so I was more aware of the process so it was a bit more unpleasant.

Psyborg
03-08-2014, 12:20 AM
So talked to Dr Villa Forte this morning and she's not happy that the Cryo was done, so she wants me to go back to the CC Pulmy. I guess it never got communicated to her that this was being considered. So this probably is NOT something we want to do :(

pberggren1
03-08-2014, 07:00 AM
Wow Bob......:scared: You were not put completely out for this? Where was this plug located? It must have been a big one if the suction would not get it out.

pberggren1
03-08-2014, 07:01 AM
So did Dr. Villa Forte say why the Cryo is not a good thing to have done?

Psyborg
03-08-2014, 01:01 PM
No but I see her and the other Pulmy at CC next week.

Yeah, the previous two times the twilighting knocked out all the memories, this time I was semi-aware for the whole thing. The nurse was holding my hand becaue I was clenching up my fists so tight lol.

pberggren1
03-08-2014, 01:04 PM
I'm so sorry Bob you were not put out completely.

Psyborg
03-11-2014, 10:12 PM
SO back to Cleveland on Thursday, and a Bronch up there on Friday. Third in two weeks...kinda getting old lol.

I'm kind of unsure what to feel about the situation. I thought all my Doctor's were talking, but obviously they were not. The Pulmy I have in Columbus, is literally one of if not the best in Columbus, but I'm sure he doesn't see as many Weg's patience as they do in Cleveland. I'm somewhat defensive that they give him a bit of respect, but on the other hand I feel like he thought he was good enough that he didn't feel he needed to ask any questions of Cleveland. Ironically, kind of feel like his skill was a bit of a detriment in this case potentially. But he's a nice guy and so unassuming that he doesn't strike me that way.

Sorry rambling...aggravated about the situation a little and about the number of procedures I've had to go through due to this last flare up.

pberggren1
03-12-2014, 06:53 PM
At the end of the day we need to make sure our docs are communicating with one another when it is needed. After all, we are the boss and need to make sure that what needs to be done is being done.

Psyborg
03-14-2014, 05:23 AM
Turns out Dr Villa Forte thought I said it was done by a GI doc. I was still hopped up on the meds when I called so I'm not sure if I said that or not...lol. Anyway the pulmy at CC said they do in fact use Cryo for scar removal on Weggies. So It seems a lot of the concern over the past week was unnecessary. I do have a plan going forward regarding communication though :)

Psyborg
06-10-2014, 04:47 AM
So I decided I should update my thread here. I went for a run this morning...yeah that's right a run. Not going to win any races, but at least I don't get so out of breath now.

So I have to say that the cryo-ablation was a rousing success. Not sure how long it will last, but I've had a few months now without my annoying rattle and cough.

That whole collapsing lung part was weird. I'd say scary, but it was more like surreal. Anyway folks I think about you alot, but I don't always do so good anymore with keeping up on things.

LisaT
06-10-2014, 05:17 AM
So I decided I should update my thread here. I went for a run this morning...yeah that's right a run. Not going to win any races, but at least I don't get so out of breath now.

So I have to say that the cryo-ablation was a rousing success. Not sure how long it will last, but I've had a few months now without my annoying rattle and cough.

That whole collapsing lung part was weird. I'd say scary, but it was more like surreal. Anyway folks I think about you alot, but I don't always do so good anymore with keeping up on things.


I'm glad the reason you're not on here a lot is that you're out running and living your life, and not because you don't feel well enough… Great to hear that things are looking better and you're breathing easier. :thumbsup: Breath is good.

pberggren1
06-10-2014, 04:32 PM
So I decided I should update my thread here. I went for a run this morning...yeah that's right a run. Not going to win any races, but at least I don't get so out of breath now.

So I have to say that the cryo-ablation was a rousing success. Not sure how long it will last, but I've had a few months now without my annoying rattle and cough.

That whole collapsing lung part was weird. I'd say scary, but it was more like surreal. Anyway folks I think about you alot, but I don't always do so good anymore with keeping up on things.


Bob, can you explain what this cryo-ablation thing is?

windchime
06-10-2014, 09:18 PM
Bob, can you explain what this cryo-ablation thing is?

Cryoablation - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Cryoablation)


The procedure uses cold to destroy tissue. I think there was a discussion on here not too long ago regarding this.

pberggren1
06-10-2014, 11:11 PM
My memory was jogged.......thanks Cindy.

Psyborg
06-11-2014, 02:14 AM
Cryoablation - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Cryoablation)


The procedure uses cold to destroy tissue. I think there was a discussion on here not too long ago regarding this.

That's it :) They use a very cold rod that causes frost bite (basically) to the area. The tissue then flakes away. The issue I had was that I had some swelling as well as a bit of clotting combined with thick mucus that clogged that bronch. I was kind of touch and go for about 2 weeks but once that cleared up I'm breathing more or less normal again.

The pulmy did say this is not a permanent fix, but it should last a while.

Pete
06-11-2014, 12:08 PM
Been wondering about you. Glad to hear you're doing better. :)

Psyborg
06-12-2014, 02:56 AM
Been wondering about you. Glad to hear you're doing better. :)

Other than work stress things are going well right now. Just trying to keep work in perspective.

BookNut
06-12-2014, 06:41 AM
So following this last cold I'm having issues with my breathing again. I keep getting mucus buildup in my bad Bronchial tubes. I'm 95% sure that the lung itself is clear now, and this is coming from that area. Basically every 5-10 minutes I'll start weezing again until I cough up some white/clear mucus and then I'm fine again for a bit. My gut tells me the wegs is active in that area again, but it might just be irritation caused by the cold in theory. I'm currently in a "minor" flare that appears to be controlled by my increased Prednisone. Just wondering what other's experience with airways was if this is that or just the leftovers of the cold and I'm taking forever to kick the rest of the issue.

I am wondering if using a flutter valve might help you get more of the mucous out when you cough??

Psyborg
06-17-2014, 12:26 AM
I've used it when I was congested and it does indeed help. I've had kind of cruddy breathing my whole life so I've always dealt with congestion, but not being able to bring everything up reasonably fast is the challenge now :)

Starting week 3 of running. My legs hate me, but breathing is getting exercised so I'm pretty happy there.

Have been reducing prednisone, and I've made it back to my wall I hit at about 6 where I suddenly have fatigue mid-afternoon.

Velma
09-28-2014, 06:22 PM
It has been a few months since this last post but I have the same issues it seems. I have a few nodules in one lung but the main bronchial airway began scarring closed. Doctors in Pittsburgh said lets do a stent. Bad idea. 17 Months and 20 bronchoscopies later I have a stent that is embedded and cannot be removed and the scarring is now worse as it is attacking the stent. I don't know what to do. Doctors are useless in ideas to help slow the scarring so I have a "surgery" every 6-8 weeks now to open it back up and lazer out the scar tissue. If this is happening to you.. DO NOT do a stent. Good luck. Velma

Psyborg
10-05-2014, 12:17 PM
Got in for another Bronch yesterday, I swear I manage to forget how crappy my breathing is afterwards in between. A little afraid I'm gonna have that airway close off again. I figure if I make it through the night tonight I should be fine but definitely coughing up a ton of junk and that side is hating me at the moment. The damage leave no cilia so phlegm stops when it hits that point in the airway. Then I weaze again until I cough it up. On the bright side I felt great breathing-wise all Summer.

daystarr8
10-08-2014, 04:16 AM
I'm having the same problem. I've never had any dilation to the airway. Do you recommend it?

mrtmeo
10-08-2014, 06:29 AM
http://www.wegeners-granulomatosis.com/forum/tracheal-stenosis/4218-video-treatment-methods-subglottic-stenosis.html

Psyborg
10-08-2014, 09:50 AM
Daystarr, I'd suggest waiting until the Doctor's say you are ready. It is definitely worth it once you heal up, but it does seem to start a cycle of having to go back an have it repeated. That's my experience and seems to be what others told me as well. BUT once you have enough problems breathing I think it's imminently worth it.

daystarr8
10-08-2014, 03:04 PM
Psyborg. Thanks for the advice but I haven't had active WG for 11 years. I think it's progressive scar

Velma
10-24-2014, 12:10 AM
I am not sure who you doctor with but Bob advised me to see his doc at the Cleveland Clinic who has experience with scarring and cryo-ablation and what not. Because of my issues with a stent being placed I have complications but he is helping me and I am very happy. I think you definitely need to see a doctor with experience in this matter and knows what they are doing. If you need the doctors name and number just let us know.

miracleshappen08
11-09-2014, 01:25 AM
Yes once the dilation is done once you have to keep going in for them. The throat creates a lot of scar tissue. I didn't know that WG would cause stenosis until last year. I have had it for a year and half now and am getting ready to have my 7th surgery. Once it is done it feels a lot better! You can breath!!


Miracles do happen!!

daystarr8
11-09-2014, 01:45 AM
7 times is a lot. Was there active disease during those dilations ?

miracleshappen08
11-09-2014, 01:54 AM
Yes. And the weird thing is is that my blood work is coming back great for inflammation but it still attacking my throat. We are not sure why this is happen, but we have figured out that nothing with me is normal. Lol


Miracles do happen!!