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mrtmeo
08-17-2014, 09:49 AM
My mom had a 4 week course of rituxan with one week cytoxan last month.
It has been 2 weeks since last dose and she is now on imuran.
Ever since starting the treatments, she has had this constant wheeze.
The wheeze is not in her lungs but sounds like it is somewhere between her neck and upper respiratory system.
Inhalers do not help it at all.
She only wheezes on exhale.
Her prior CT scan and xrays did not show any stenosis.
She has MPA determined by a kidney biopsy.
She has nodules and ground glass opacities in her lungs.

Could she have developed stenosis while on therapy?
Does this sound like stenosis and would an ENT be able to tell if there is narrowing?

Thanks

drz
08-17-2014, 11:15 PM
Has she had a lung function test which should also help assess breathing issues? A peek down the throat with a larynx scope could also help assess situation. Also look at the youtube video recently posted here about stenosis for more info.

annekat
08-18-2014, 12:17 AM
Could be mucus collected in the windpipe. That happens to me. Though I can't say the wheezing is only on exhale. But I hope it is as simple an explanation as that. If she gets the urge to cough, some liquid guaifenesin (expectorant without the cough suppressant) could help loosen it up and get it out of there. I hope it is not stenosis, but yes, an ENT could tell by looking in there with a scope.

windchime
08-18-2014, 12:40 AM
Could be some swelling at the back of the throat if she has any kind of post nasal drip. I had wheezing from that back in January. The pulmonologist listened to my throat with a stethoscope to determine the exact location. When he figured out where it was coming from he looked down my throat which was very red and swollen. It went away when the post nasal drip slowed down. I had never had this either.

mrtmeo
08-18-2014, 03:09 AM
Has she had a lung function test which should also help assess breathing issues? A peek down the throat with a larynx scope could also help assess situation. Also look at the youtube video recently posted here about stenosis for more info.

Hi Drz,
I posted the video.
She has not had a lung function test and I know it would show practically no function due to her emphysema and vasculitis nodules.
My mom had an EGD before starting vasculitis treatments and they didn't mention any stenosis.
Her Neph said her lungs sound clear and doesn't think it is stenosis.
She does have some post nasal drip, so it could be glue like mucus stuck in her throat.
However, she has always had trouble swallowing big pills and didn't have this throat or nasal wheeze before.
I emailed the vasculitis foundation to try and find an ENT well versed in vasculitis because she saw 2 ENT's in the past and they couldn't find anything except a little inflammation on a CT scan when she had sinus and ear blockage feelings.

mrtmeo
08-18-2014, 03:11 AM
Could be mucus collected in the windpipe. That happens to me. Though I can't say the wheezing is only on exhale. But I hope it is as simple an explanation as that. If she gets the urge to cough, some liquid guaifenesin (expectorant without the cough suppressant) could help loosen it up and get it out of there. I hope it is not stenosis, but yes, and ENT could tell by looking in there with a scope.

Hi Anne,
I don't like to use medications if at all possible, but I will take a look at the Guaifensin.
Thanks.

mrtmeo
08-18-2014, 03:14 AM
Could be some swelling at the back of the throat if she has any kind of post nasal drip. I had wheezing from that back in January. The pulmonologist listened to my throat with a stethoscope to determine the exact location. When he figured out where it was coming from he looked down my throat which was very red and swollen. It went away when the post nasal drip slowed down. I had never had this either.

Hi Cindy,
I read most of the posts regarding your lung situation and pray that you find the best solution soon.
She has the post nasal drip and inflammation could be the problem even tho she is on prednisone and Imuran.
It seems the throat needs the steroids directly verses systemically for effectiveness.

mrtmeo
08-18-2014, 08:36 AM
Could be some swelling at the back of the throat if she has any kind of post nasal drip. I had wheezing from that back in January. The pulmonologist listened to my throat with a stethoscope to determine the exact location. When he figured out where it was coming from he looked down my throat which was very red and swollen. It went away when the post nasal drip slowed down. I had never had this either.

What did you do to resolve the post nasal drip?
I have read that acid reflux can cause this too and my mom has barrett's esophagus and a healing peptic ulcer.
She rarely ever felt any acid reflux.
This made it difficult to diagnose.

windchime
08-18-2014, 10:07 AM
The pred helped the pnd, at which time the swelling went down and the wheezing disappeared. I have GERD to and they like to blame things on that also. Personally I think it was the pred drying up the pnd. Sometimes the acid comes up into the throat and can cause ulcers and/or swelling. The swelling in itself could cause the wheezing. If the wheezing is being caused by swelling, whatever the cause, and good ENT should be able to find the cause. Good luck to you and your mom.

annekat
08-18-2014, 11:40 AM
Hi Anne,
I don't like to use medications if at all possible, but I will take a look at the Guaifensin.
Thanks. Guaifenesin is from a tree bark. I think it is considered pretty safe, non-addictive, etc. It is the same ingredient as in regular Mucinex pills (not the DM or other ones with added drugs), and those pills when taken on a continuous basis will also help thin the mucus, whether it is in the sinuses, nose, throat, or chest. I have found for myself that if I have a lot of trouble coughing things up, the liquid expectorant version works better and more quickly than the pills. It can be found in brands like Robitussin or house brands at drug stores, often called Tussin. It can be hard to find it without the DM cough suppressant, so read the label carefully, since that stuff is not at all good to take for very long.

mrtmeo
08-18-2014, 11:42 AM
Hi All,
I did some digging in the literature and found that post nasal drip, cough, especially at night and wheezing can be caused by pepsin enzymes.
Some people like my mom have silent reflux where there are not many symptoms.
The pepsin enzyme appears to be responsible for the attack on the mucosal lining of the esophagus and throat and not really the acid.
An acidic environment activates this pepsin enzyme.
Sodium alginate has been found effective in stopping this enzymes attack.
So, I have some sodium alginate which I gave my mom 1 tsp and her post nasal drip stopped.
She hasn't coughed, yet either.
I will try to update if this works.

Alginate controls heartburn in patients with erosive and nonerosive reflux disease (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3436053/)

Sodium Alginate to Treat Non-Acid Reflux | Fauquier ENT Blog (http://fauquierent.blogspot.com/2013/01/sodium-alginate-to-treat-non-acid-reflux.html)

I forgot to thank everyone for helping me figure this out.

annekat
08-18-2014, 11:47 AM
I have wondered, too, if some of my coughing could be from acid reflux, which I have from time to time, although usually fairly mildly. That is interesting and I'll have to find out where or how easily sodium alginate can be gotten.

Dirty Don
08-18-2014, 12:22 PM
I was treated for a very long time for 'silent reflux'...with pantoprazole. Am basically off it now, the coughing seemed to subside with weaning off pred once and for all. Not sure the 2 are related to the cough. First rheumy suggested cough drops (sugarless of course!), they worked just fine. Except now I'm addicted to Ricola...hmmm, Ricola? Pred? Pantaprazole? Ricola wins!!!

drz
08-18-2014, 03:24 PM
What did you do to resolve the post nasal drip?
I have read that acid reflux can cause this too and my mom has barrett's esophagus and a healing peptic ulcer.
She rarely ever felt any acid reflux.
This made it difficult to diagnose.

And this can also cause inflammation and feeling of irritation in throat.

I think a lung function test also helps sort what type of breathing problem one has which might also help with diagnosis. Has she seen a pulmonary specialist?

I had wheezing from any exertion when my lung function was worse. Pulmonary rehab helped me a lot.

drz
08-18-2014, 03:38 PM
I have wondered, too, if some of my coughing could be from acid reflux, which I have from time to time, although usually fairly mildly. That is interesting and I'll have to find out where or how easily sodium alginate can be gotten.

I think here it (Faringel) might be under this name:

Gaviscon for Heartburn & Acid Reflux Relief (http://www.gaviscon.com/)

The seaweed extract aliginate can be got at most health food stores.

mrtmeo
08-19-2014, 06:27 AM
I think here it (Faringel) might be under this name:

Gaviscon for Heartburn & Acid Reflux Relief (http://www.gaviscon.com/)

The seaweed extract aliginate can be got at most health food stores.

Yes, Gaviscon has the right amount of sodium alginate in it, but it also, has Aluminum which I avoid.

Psyborg
08-19-2014, 09:42 PM
I had a similar wheeze, mine was a combination of subglotal and bronchial stenosis. Most of mine was in the Bronchial tube on my left side. After a while i was able to identify exactly where it was as I got so used to it. I got no improvement from treatments, but did finally get an ablation which led to several months of improvement. I'm told that will have a finite timeline before it returns though.

mrtmeo
08-20-2014, 07:06 AM
I had a similar wheeze, mine was a combination of subglotal and bronchial stenosis. Most of mine was in the Bronchial tube on my left side. After a while i was able to identify exactly where it was as I got so used to it. I got no improvement from treatments, but did finally get an ablation which led to several months of improvement. I'm told that will have a finite timeline before it returns though.

Hi Bob,
That is what scares me the most is that the treatments are not permanent.
Anytime they cut away tissue, they cause more scar tissue which ends up shrinking bringing back the original problem.
Perhaps, if they cutaway enough to make up for the shrinkage, it would give people relief?

mrtmeo
08-20-2014, 07:08 AM
I have an update.
I found this study showing pepsin to be permanently deactivated using alkaline water.
I am trying it as a nasal rinse and gargle with my mom versus drinking it because I think we need some pepsin for digestion.

Potential benefits of pH 8.8 alkali... [Ann Otol Rhinol Laryngol. 2012] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22844861)

Psyborg
08-20-2014, 11:57 PM
Mine was actually a cryo-ablation. There is way less scarring from that. But they cautioned it was not permanent for sure.

mrtmeo
08-21-2014, 02:13 AM
Mine was actually a cryo-ablation. There is way less scarring from that. But they cautioned it was not permanent for sure.

That's good news!

mrtmeo
08-21-2014, 03:40 AM
I have an update.
I found this study showing pepsin to be permanently deactivated using alkaline water.
I am trying it as a nasal rinse and gargle with my mom versus drinking it because I think we need some pepsin for digestion.

Potential benefits of pH 8.8 alkali... [Ann Otol Rhinol Laryngol. 2012] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22844861)

I tried the ph water and had her drink it because her post nasal drip was not going away and she was coughing all the time now.
I would not recommend using this water unless you know for sure your issue is reflux.

I think my mom could have contracted a pathogen, so I use 1:100 lugol's iodine to distilled water with baking soda as a nasal rinse and the cough and post nasal drip is settling down.
She used to have MRSA colonized in her nares and the only thing that made her negative to MRSA was the iodine nasal rinse.
It was proven in the literature effective against mrsa
Bactericidal activity of antiseptics against methicillin-resistant Staphylococcus aureus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC271835/)

The only other thing left that it could be is from the vasculitis, but she just finished her induction of Rituxan, so don't know if it is working.

mrtmeo
08-22-2014, 12:10 AM
My mom's post nasal drip is all the time and coughing all day long.
I tried guifensen with dextramethorphan and it stops the cough for awhile.
I stopped the imuran and will see if this helps.
She had just started the imuran 10 days ago and am wondering if this is the cause, so I called her nephrologist and am waiting for a response.
Otherwise, I may have to bring her to the ER and they will just do an xray and say she has pneumonia.

annekat
08-22-2014, 12:59 AM
My mom's post nasal drip is all the time and coughing all day long.
I tried guifensen with dextramethorphan and it stops the cough for awhile.
I stopped the imuran and will see if this helps.
She had just started the imuran 10 days ago and am wondering if this is the cause, so I called her nephrologist and am waiting for a response.
Otherwise, I may have to bring her to the ER and they will just do an xray and say she has pneumonia. I would say it is much better to use the liquid guaifenesin WITHOUT the dextramethorphan! That stuff has a rebound effect of making the cough worse after a few days. The plain guaifenesin will loosen up the mucus and make coughs more productive, so that ultimately, there is less collecting in there to cough up, and it takes less coughing to do it. You'll just have to look a little harder to find the guaifenesin without the DM. Rite Aid and Walgreens have it in their house brand, and it is called "Tussin" or "expectorant". I think Robitussin also makes it, and a brand in Canada that has been mentioned on here.

cutehair2013
08-23-2014, 05:25 AM
I have been suffering from wheezing pretty much since I started to show signs of sinus infections, I also feels like someone covers my mouth and plugs my nose at the same time...cant take a breathe and I wheeze a fair amount. Mind you it comes and goes and can not find a common factor on when it happens. After a tons of lung tests, heart tests, ect....my lung specialist feels that due to the post nasal drip and the mucus my vocal cords are not functioning properly which would result in what I describe to her. I don't feel out of breathe when it happens just a sudden gasp for air. You can do physiotherapy for vocal cords although it sounds less than a good time. Mostly when it starts I try to sit down and calm myself until it stops. But the wheezing is a pretty constant thing.

mrtmeo
08-23-2014, 07:12 AM
I would say it is much better to use the liquid guaifenesin WITHOUT the dextramethorphan! That stuff has a rebound effect of making the cough worse after a few days. The plain guaifenesin will loosen up the mucus and make coughs more productive, so that ultimately, there is less collecting in there to cough up, and it takes less coughing to do it. You'll just have to look a little harder to find the guaifenesin without the DM. Rite Aid and Walgreens have it in their house brand, and it is called "Tussin" or "expectorant". I think Robitussin also makes it, and a brand in Canada that has been mentioned on here.

I tried the guifensen without dm but my mom's cough was only a little better.
Good know about the rebound effect.
I guess will have to deal with it.

annekat
08-23-2014, 11:25 AM
I tried the guifensen without dm but my mom's cough was only a little better.
Good know about the rebound effect.
I guess will have to deal with it. I guess theoretically if coughs are becoming more productive by use of an expectorant, eventually they should lessen in frequency. It might take awhile. I know it has for me. I've been using the plain liquid guaifenesin for a few months and it definitely makes the stuff easier to cough up, but as long as there is still stuff getting down in there, there will still be coughing. Just lately, I've been coughing less and have not needed the expectorant nearly as much, if at all, because the coughs have started becoming more productive on their own. My only explanation is that I've come out of a flare and there is less mucus being produced, thus less collecting and thickening in my airways and causing so much coughing. As for the DM cough suppressant, I remember using that before diagnosis, when I was really coughing a lot, and after dx when it got really bad at times. It definitely calmed the coughing, but after a few days it just seemed to make it worse, especially if I took it several times a day. Then I read about the rebound effect online, and noticed that the product packaging said only to take it for a few days, and not continuously. I guess it is intended more for colds or bronchitis which are temporary and not so much for chronic conditions. I hope your mom finds some relief from the coughing. Another thing that might help open things up and allow better mucus expulsion would be to inhale steam from a bowl of hot water, towel over head, not too hot, and for me it is pleasant to add some peppermint leaves or a peppermint teabag. I think plain water with nothig added might be harsh, and salt might also be something to add to take the edge off, or other herbs such as eucalyptus, rosemary, whatever.

mrtmeo
08-23-2014, 11:40 AM
I guess theoretically if coughs are becoming more productive by use of an expectorant, eventually they should lessen in frequency. It might take awhile. I know it has for me. I've been using the plain liquid guaifenesin for a few months and it definitely makes the stuff easier to cough up, but as long as there is still stuff getting down in there, there will still be coughing. Just lately, I've been coughing less and have not needed the expectorant nearly as much, if at all, because the coughs have started becoming more productive on their own. My only explanation is that I've come out of a flare and there is less mucus being produced, thus less collecting and thickening in my airways and causing so much coughing. As for the DM cough suppressant, I remember using that before diagnosis, when I was really coughing a lot, and after dx when it got really bad at times. It definitely calmed the coughing, but after a few days it just seemed to make it worse, especially if I took it several times a day. Then I read about the rebound effect online, and noticed that the product packaging said only to take it for a few days, and not continuously. I guess it is intended more for colds or bronchitis which are temporary and not so much for chronic conditions. I hope your mom finds some relief from the coughing. Another thing that might help open things up and allow better mucus expulsion would be to inhale steam from a bowl of hot water, towel over head, not too hot, and for me it is pleasant to add some peppermint leaves or a peppermint teabag. I think plain water with nothig added might be harsh, and salt might also be something to add to take the edge off, or other herbs such as eucalyptus, rosemary, whatever.

Hi Anne,
I do have a personal steamer that I use himalayan sea salt or herbs in and I might try it.
She seems to be getting too anemic, so everything is bothering her badly.
I may have to bring her in for a transfusion again.
Do u know of any real clues to determine if someone is very anemic?

annekat
08-23-2014, 12:07 PM
I have been suffering from wheezing pretty much since I started to show signs of sinus infections, I also feels like someone covers my mouth and plugs my nose at the same time...cant take a breathe and I wheeze a fair amount. Mind you it comes and goes and can not find a common factor on when it happens. After a tons of lung tests, heart tests, ect....my lung specialist feels that due to the post nasal drip and the mucus my vocal cords are not functioning properly which would result in what I describe to her. I don't feel out of breathe when it happens just a sudden gasp for air. You can do physiotherapy for vocal cords although it sounds less than a good time. Mostly when it starts I try to sit down and calm myself until it stops. But the wheezing is a pretty constant thing. Nice to hear from you again, cutehair. I had a lot of trouble with my vocal chords for some time before I was diagnosed, with mucus collecting on them, I guess, and my breathing sounded like asthma even though I didn't really feel short of breath. My voice sounded terrible during that time, too. Around that time I had an allergy test which showed I was quite allergic to lots of things such as pollens and molds. I was on the shots for about a year and half, I guess, and stopped when I was dx'ed. I did get better with the shots, and at the same time, I was having lots of sinus infections and getting treated with antibiotics and prednisone. Things kind of stabilized for awhile and then my lungs got really bad and I was eventually dx'ed and treated for WG. It seems like I have the worst WG symptoms around the time of seasonal allergies and tend to have flares at that time. I don't know if there is any connection.

annekat
08-23-2014, 12:10 PM
Hi Anne,
I do have a personal steamer that I use himalayan sea salt or herbs in and I might try it.
She seems to be getting too anemic, so everything is bothering her badly.
I may have to bring her in for a transfusion again.
Do u know of any real clues to determine if someone is very anemic? The steamer sounds good. I have one, too, but the resevoir is a little small and I find the bowl and towel method to be more satisfactory. Yours might be a better design. I with i could answer your question about anemia, but I don't know much about it. It doesn't seem to be a problem that I have.

LisaT
08-31-2014, 12:18 AM
I would say it is much better to use the liquid guaifenesin WITHOUT the dextramethorphan! That stuff has a rebound effect of making the cough worse after a few days. The plain guaifenesin will loosen up the mucus and make coughs more productive, so that ultimately, there is less collecting in there to cough up, and it takes less coughing to do it. You'll just have to look a little harder to find the guaifenesin without the DM. Rite Aid and Walgreens have it in their house brand, and it is called "Tussin" or "expectorant". I think Robitussin also makes it, and a brand in Canada that has been mentioned on here.

Benylin mucous and phlegm. The key is you want the expectorant without cough suppressant. I think they work at cross purposes. Guaifenesin should be the only active ingredient.

LisaT
08-31-2014, 12:22 AM
I have been suffering from wheezing pretty much since I started to show signs of sinus infections, I also feels like someone covers my mouth and plugs my nose at the same time...cant take a breathe and I wheeze a fair amount. Mind you it comes and goes and can not find a common factor on when it happens. After a tons of lung tests, heart tests, ect....my lung specialist feels that due to the post nasal drip and the mucus my vocal cords are not functioning properly which would result in what I describe to her. I don't feel out of breathe when it happens just a sudden gasp for air. You can do physiotherapy for vocal cords although it sounds less than a good time. Mostly when it starts I try to sit down and calm myself until it stops. But the wheezing is a pretty constant thing.

This is how I felt before meds and it turned out that I had subglottic stenosis. Have they scoped your throat to check for that? Also they should have checked the tiny joints that move the vocal cords. These can be immobilized in rheumatoid arthritis sufferers... Since there's so much overlap in autoimmune diseases I would ask if they've looked at that. Do you have a hoarse voice or laryngitis?

LisaT
08-31-2014, 12:26 AM
The steamer sounds good. I have one, too, but the resevoir is a little small and I find the bowl and towel method to be more satisfactory. Yours might be a better design. I with i could answer your question about anemia, but I don't know much about it. It doesn't seem to be a problem that I have.

When I was having the worst of my stenosis/coughing/wheezing/choking troubles, I found warm steam made me feel like I couldn't get air. Cool humidifier and nebulizer with saline worked better for me. Drinking warm tea also helped, but inhaling warm air made me feel as though I was suffocating. I've been told by paramedics when my kids used to get croup that cool mist opens up the airways more. Sometimes just stepping outside into cool moist air helped me in addition to the other fixes.

annekat
08-31-2014, 11:11 AM
Benylin mucous and phlegm. The key is you want the expectorant without cough suppressant. I think they work at cross purposes. Guaifenesin should be the only active ingredient. I've seen you Canadians mention that brand, but I haven't seen it here in the places where I shop. So I go for the drugstore house brands, making sure that DM is not on the label!

cutehair2013
09-12-2014, 08:01 AM
subglottic stenosis I can not say that I have heard that before but sounds worth looking into....I have the whole have hoarse voice thing going on all the time and I am constantly clearing my throat, I sound like I am a 30 year smoker in the morning..my wife says I am bring sexy back some days...lol It's awful

mrtmeo
09-21-2014, 04:13 AM
We will be going to a laryngologist next week to see if her throat wheezing is due to vasculitis in her throat.
I will update when we find out.

mrtmeo
10-03-2014, 09:49 AM
Didn't make it to the laryngologist this week due to imuran causing nausea, so next week.
Now, she had what sounds like a chunk of mucus in her throat when she coughs instead of the typical post nasal drip.
She is not able to cough this out and can only swallow it.
She has MPA and not GPA, so I don't know why she has this, but I have heard of some people having both.

Psyborg
10-04-2014, 09:19 AM
They are pretty closely related, just slightly different affected blood vessels.

mrtmeo
10-04-2014, 10:15 AM
She coughed up a huge glob and feels better.
This happened a few hours after using MusinexDM 1200mg.
I had given her just the 400mg guifensen and maybe it broke it up.

mrtmeo
10-05-2014, 10:52 AM
Anne was right.
The Guaifensin (only) works to get out the mucus blob in the back of the throat.
My mom hacked another blob up, so there must be some kind of infectious or inflammation process going on in the sinus or a little lower.
Thanks again Anne!

daystarr8
10-08-2014, 06:54 AM
What is guifensen?

annekat
10-08-2014, 07:19 AM
It's a substance from a tree bark. It is the ingredient in Mucinex. It thins and loosens mucus and makes it easier to cough up or blow out of the nose. Mucinex is good to take on a continuous basis; I'd recommend the 1200mg. extended release version twice a day. You can also get it in generic forms, but maybe not in that version. HOWEVER, for stubborn stuff that won't cough up out of the bronchii or the back of the throat, i recommend LIQUID guaifenesin. It seems to work faster, in my experience. It is sold as Expectorant or Tussin in generic brands, or brands like Robitussin, on the shelf with the cough syrups. BE CAREFUL, though, do not get the one that contains Dextromethorpan, which is a cough suppressant, as it may suppress the cough but you will be coughing less up, AND it has a rebound effect after a few days where you will be coughing more than you need to to cough the stuff up. Those ones are usually labelled DM; read the label and don't get those, just get the plain Guaifenesin syrup, which may be harder to find. Rite Aid and Walgreen's have their own house brands of it.

Also, when using any form of guaifenesin, it will help a lot to drink plenty of water!

daystarr8
10-08-2014, 03:09 PM
Thank you so much. I've been taking mucinex for about 2 weeks. I think it's helping a a bit but I haven't been consistent. I sure will now

annekat
10-08-2014, 03:18 PM
Thank you so much. I've been taking mucinex for about 2 weeks. I think it's helping a a bit but I haven't been consistent. I sure will now Make sure to drink lots of water and if mucinex doesn't help enough, use the guaifenesin syrup.

mrtmeo
10-09-2014, 10:08 AM
ok, went to see the laryngologist who apparently has seen someone with wegener's.
He scoped her throat and there was no stenosis, thank God.
He only heard her cough once and said he thinks it is coming from her lungs, but I listened with a stethescope and could hear it coming from her throat.
He didn't even listen to her lungs nor did he recommend she see an ENT.
He has done studies on acid reflux and the pepsin enzyme, but had nothing to say about whether her post nasal drip is from GERD or not.
I was not impressed.

So, we don't know if her post nasal drip or mucus is from acid reflux or the MPA in the lungs.

mrtmeo
10-31-2014, 10:02 AM
Update:
Her cough is gone again, since starting the Mofetil.
Hopefully, it is gone for good.

kmac14
11-04-2014, 09:25 AM
I have stenoses and this wheeze sound on exhale is very distinctive - they listen for it and it is the stenosis issues. My lungs are very stenosed. At one point, I was having lazer treatment to reopen some of the stenoses. Now in a bit of a battle to try to get that on an ongoing basis. A Scotland England funding issue. In order to not deteriorate further, the best therapy for me has been to swim, swim and swim again. I understand that swimming may not be possible often or with certain cases or for many reasons. But if you can, swim. For joints, for lymphatics, for lungs. Best way to keep scarred lungs as healthy as possible.

mrtmeo
11-04-2014, 10:03 AM
Hi Kim,
Stenosis is so debilitating and am glad you have a way to help.
I wish I knew of something that could eat scar tissue and serrapeptase is supposed to do that, but there are no studies showing this.
The problem with cutting the tissues is scaring.
Some use a topical steroid on the inflammation if it is in the early stages, but the cytotoxic drugs don't seem to get rid of this problem.
I have seen some new stents on youtube that are removable that sound interesting.

kmac14
11-04-2014, 10:18 AM
Hi Mrtmeo (again:), my stenoses are small and many. Certain lobes have gone but it has been over a very long period of time (decades) and so the working lobes have kind of overcompensated and got bigger. There has been no decline over say six or so years and I do everything I can to keep it as open as possible. I work in a quite demanding job full time and the only indication to the outside world is that I get puffy going up stairs and if I am exherting. My breathing sounds a bit strange and I have to be so, so careful with chest infections. My worst problem with chest is often getting docs to take what I am saying on board. I often end up in confrontation just to get properly treated.

kmac14
11-04-2014, 10:21 AM
Will look into these stents, thanks.

mrtmeo
11-04-2014, 10:27 AM
Hi Mrtmeo (again:), my stenoses are small and many. Certain lobes have gone but it has been over a very long period of time (decades) and so the working lobes have kind of overcompensated and got bigger. There has been no decline over say six or so years and I do everything I can to keep it as open as possible. I work in a quite demanding job full time and the only indication to the outside world is that I get puffy going up stairs and if I am exherting. My breathing sounds a bit strange and I have to be so, so careful with chest infections. My worst problem with chest is often getting docs to take what I am saying on board. I often end up in confrontation just to get properly treated.

It is so sad that just getting drs familiar with vasculitis for earlier diagnosis is hard enuf without fighting pride and arrogance to get treated properly.

kmac14
11-04-2014, 10:44 AM
Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me.

mrtmeo
11-04-2014, 01:43 PM
Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me.

Thank God for sites like this and the vasculitis foundation support for helping us learn everything about our disease in order to get proper treatment.
If Drs could only treat this disease with the same seriousness that they give to Cancer, we would have better care.

annekat
11-04-2014, 03:13 PM
Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me. i have heard the same thing about pulmonolgists in general, and experienced it. I wonder why. There must be some good ones out there.

Dirty Don
11-05-2014, 02:38 AM
i have heard the same thing about pulmonolgists in general, and experienced it. I wonder why. There must be some good ones out there.

Mayo in Phz, Dr. Vaszar, great pulmy. I know way more about lung functions than I ever wanted to know...it's all good! And he's funny! LOL!