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Psyborg
02-10-2011, 12:20 AM
Here's my dilemma. My stenosis does not appear to be progressing very fast, if at all. But it impacts my ability to sleep soundly, as well as a massive impact on anything aerobic. If I try to do anything aerobic I start to weeze pretty uncontrollably, if I keep pushing it (cause I am a man afterall...we have to learn the hard way :biggrin1:), I get incredible pain basically in the middle of my sternum. I believe this is the lungs not getting enough oxygen, and I stopped pretty fast when I got the pain ;P.

So my question is will the dilation help with this at all? If I do get this am I starting myself on the path to continual dilations in the future as well? I'd really like to be able to get some aerobic activity in, but I don't want to hasten a series of surgeries either.

I'm planning on asking Dr Villa-Forte next week when I see her and then my ENT when I see him next month. Was just hoping for some opinions here from those who've already been through this.

JanW
02-10-2011, 12:36 AM
I don't know how many here have been through several tracheal dilations -- I know that a few have had many dilations further up, in the subglottis.

Sorry I can't be of any help -- my stenosis is in my subglottis. I will say this though -- any relief that you can get from the stenosis will probably make a great difference in your quality of life -- it is probably affecting you more than you realize.

Psyborg
02-10-2011, 12:43 AM
It's weird, it definitely affects my breathing. Anything that gets me breathing harder than normal definitely starts the weezing and coughing, but on the flip side when I am relaxing I have no negative impact at all (except for sleeping as that also makes me weeze). I just don't want to make a mistake of jumping on this too soon, but i also don't want to wait longer than I should out of unnecessary worry about the side effects of it. Not sure if that makes sense or not :)

Sangye
02-10-2011, 02:20 AM
Bob, you definitely need input from the Wegs specialists regarding your particular case.

Meanwhile, you might get relief at night using the torso-length wedge pillow I found. It really keeps my airways open.

As far as exercise, what most people consider to be aerobic is actually anaerobic. When you see people exercising to the point where their faces are bright red, that's much higher than aerobic. I suggest you try lowering your intensity (and speed if that applies). Go for time, not intensity. It's better for your heart and should help you avoid wheezing.

I'm concerned that the chest pain you're getting is actually your heart being deprived of oxygen. Substernal pain is usually heart-related. Make sure you mention it to Dr Villa-Forte next week. Any chance you can get into your ENT sooner?

Psyborg
02-10-2011, 02:32 AM
In regards to the pain, it only happened the one time, and that told me I shouldn't push that hard :) So I've not tried to run.

I really wanted to be able to run and some other stuff after I lost weight, I'm probably being weird but I really do want to be able to do some activities, it's definitely on my list to ask if this is something I should adjust my perspective on.

The only way to prevent the weezing is not to exceed a pretty sedate walk, I know I'm still getting some benefit, but surely not much :( This issue includes walking briskly and riding bikes, it's only when I go really slow that I don't weeze.

ENT is out the day I go up to see Dr Villa-Forte next Friday :( So it's the 2nd of March for another jaunt up to Cleveland.

I may look for that pillow...I'm a mess at night. I have to sleep on my side, but after loosing weight and getting WG my knees hurt each other if I sleep with them on top of each other....so i already have a pillow between my knees :). That and it helped with the foot cramping weirdly enough. At this point my only trouble free position to sleep in is on my right side...but my shoulder starts to hurt and I'll flip to the left, which then makes me wake up due to the breathing weirdness. At least one of my newer meds makes me sleepy, so I can at least go right back to sleep.

Sangye
02-10-2011, 02:40 AM
Running!!!??? I would bet that is definitely out while you have any stenosis. That puts a lot of stress on your heart.

It's important to exercise as much as you safely can. As much as you safely can. I repeated it, because you're a guy. :wink1:

Psyborg
02-10-2011, 02:43 AM
That's probably a good idea ;)

Honestly, when I lost weight I never had been a runner even when I was young and in shape, but after being in pretty poor shape for all those years, I really wanted the opportunity to do some things I hadn't been able to.

PS...you wouldn't happen to have a link to the type of pillow you are talking about would ya? I want to make sure I'm looking at the right thing.

Sangye
02-10-2011, 02:50 AM
Oops, I meant to put it... Acid Reflux pillow wedge relieves GERD, heartburn, acid indigestion, Gastroesophageal Reflux and more. (http://www.medslant.com/index.html)

Psyborg
02-10-2011, 03:09 AM
Cool, I'll look into that :)

Thakator
02-11-2011, 01:57 AM
Hi Bob, I will second Sangye's advice to look into the pillow. While not the brand referenced in her link, I have used one since my open lung biopsy and it definately makes trying to sleep with lung, chest and rib pain noticeably easier. Also allows me to sleep on my back which is impossible otherwise - - and it does lessen the episodes of nighttime GERD pain. Good luck, Ron

Elena
02-11-2011, 07:21 AM
I have tracheal stenosis and I think it's really frustrating not being able to to all the things I want to do because the shortness of breath. In my opinion it's better going through a few of these surgeries than not doing it. For me the surgeries are really ok, as I'm in quite good shape already a couple of hours after I wake up, my throat only hurts a little bit. Even though the stenosis may come back again after just a few months, it's really worth it. The positive aspects really outweighs the negative ones, at least that's what I think. I'm guessing that it's not that easy for you though, as you probably have to pay a lot of money for each surgery..

Psyborg
02-11-2011, 08:02 AM
Thankfully that's not too big a concern for me right now. I'm more concerned with getting a net affect of worse stenosis than I have already.

coffeelover
02-14-2011, 06:08 AM
Hello Bob,

My name is Lisa. I was diagnosed with Wegs in 2008 and my symptoms were severe stenosis. (I was breathing through the equivalent of a stir stick opening and I was passing out continually) I ended up with a trach in for over 7 months, but now with the help of medications, especially that dreaded prednisone, I am trach free. However, I am not stenosis free. I still suffer and can relate to your aerobics dilemas. I too, if I push it too hard, tend to wheeze and huff and puff. I know that the stenosis that I have is partially related to my trach surgeries and the scraping of the scar tissue, which eventually creates more scar tissue. It is also related to inflamation when I tried to get off the prednisone (which only lasted a few days before I was back on). I have been taking 10 mg a day for over 2 years and I really dont see a chance to reduce it. I definately do not want the trach back, although it was relatively easy. For me its a cosmetic thing and I figure sometime in the future, I will probably end up with a trach again. Until then I do everything I can to keep away from that possible scenario. So my suggestion to you, if you should decide to accept it, is to first be sure your stenosis is not something that can be fixed or controlled with medications such as prednisone, then do what I do with exercise....take everything down a level from where you are comfortable. Exercise is exercise and so what if it's not what you have done in the past.
It scares me at times to think that some time, somewhere my stenosis could worsen and it could worsen quickly and when you cant get air, then guess what your next step is. As my rheumtologist told me the other day...I have to be very aware of my symptoms and get help asap when needed.
Best of luck! Lisa or Coffeelover

Psyborg
02-14-2011, 09:21 AM
Thanks for that information Lisa, it's always nice to hear from those with more experience in this than me :)

JanW
02-15-2011, 01:46 AM
I don't know what your doc is telling you, Bob, but for my subglottic stenosis, my doc (who is one of the world's leading experts in this) is pretty skeptical that medication controls it at all. They don't really know what makes it worsen, or not. For instance, I should have needed one, maybe two surgeries by now (my last surgery was in March 2010) but so far it has been just as open as when he operated. And I'm not on pred, just a pretty low dose of mtx.

coffeelover
02-15-2011, 07:08 AM
I agree Jan! Please consult with an expert. I consult with my local ENT(who did my surgery, but is not a WEG specialist, another ENT from the Mayo in Rochester, who does specialize in WEGS, MN and my Rhuemy to come to the conclusions that I come to. Ultimately the decision is mine and part of my decision making at this time (since I am not in too bad of shape) is to avoid the surgery for monetary reasons. I have sucky insurance and would like to catch up from 2008 in my doc bills......But if I feel it is getting worse, I know that I can get in quick and move things along as needed. I hope you have these relationships with your doctors in case the need arises quickly.
LIsa (coffeelover)

Psyborg
02-15-2011, 07:47 AM
I'm seeing a specialist in Cleveland who works with the vasculitis team there regularly. I'm actually mostly going on what I see here at this point. My previous conversations with the the ENT have been to the affect of "when I'm ready". I felt generally horrible until the last month or so (so there is hope :p), so I really didn't breech the subject. He said many with TS can't climb stairs without getting winded, unless I climbed 6 flights I'm pretty much ok, but like I said anything that really works me is out of the question. But I don't want to get stuck in a cycle of constant repeat surgeries sooner than necessary either. Not sure if that makes any sense.

The biggest scare I had was when I got a chest infection in early January. I woke up unable to breath with gunk in the old trachea. Thankfully after a few seconds of panic I coughed it up. This aspect of the disease is kind of scary for me, as I have a stupid phobia of not being able to breath going back to when I was a kid. I had a ton of bad dreams that I was not able to breath. I had childhood asthma...so that's probably the source of the dreams :p

JanW
02-16-2011, 03:34 AM
Has the doc made clear that you would have to have repeat surgeries. I know that this was my fear as well (although I didn't have a choice, mine had to be corrected or I would have ended up dead) but I'm coming up on a year with no repeat in sight.

Psyborg
02-16-2011, 04:41 AM
No, in fact the implied it would be a one time deal most likely. I think that led me to be more confused as it seems pretty apparent that some folks end up getting repeat treatments, but obviously in your case it's the opposite so far (good for you :)). I see the ENT again on 3/2, and I see my Wegs specialist this Friday, it's on my list to inquire about.

drz
02-16-2011, 07:38 AM
Has the doc made clear that you would have to have repeat surgeries. I know that this was my fear as well (although I didn't have a choice, mine had to be corrected or I would have ended up dead) but I'm coming up on a year with no repeat in sight.

Don't you just love it when they make these treatment choices so easy. We do this or else..... Nothing to debate. Just pray it works!

JanW
02-17-2011, 01:10 AM
Bob, I also think it's important to remember that with stenosis where you are treated first really matters. People who go to major center with ENTs/thoracic surgeons who deal with this all of the time have pretty good success rates. Particularly when you are reading on here you are seeing a wide variety of patients, all over the world. Some people are having surgery with lasers (rarely done in the US except in cases where the scarring is so thick that you can't cut it with microscissors), some are just having repeat balloon dilations and since I dilation is just stretching without cutting, yes, of course, it will have to be done over and over. My doc is constantly revising his surgeries to make it safer and better, and since he's somewhat of a worldbeater in this kind of thing (this and fixing saddle noses is his deal, which is good, because the two often run together) I trust his judgment. Since you go to CC, you should trust them and if they tell you one surgery, go ahead and get it done if the stenosis is impacting your quality of life.

Psyborg
03-17-2011, 10:34 AM
I saw my ent today and he said it's time. So it should be happening in the next month or so.

coffeelover
03-17-2011, 11:01 AM
Good Luck Bob! Its not as scarey as it sounds...and you know, you gotta do what you gotta do. We will be with you all the way.
lisa

elephant
03-17-2011, 11:37 AM
Good luck and we will be with you!!

DEE
03-17-2011, 04:21 PM
Good luck BOB glad things are getting sorted for you DEEx

Sangye
03-18-2011, 01:14 AM
Sounds like the perfect time to do it since you're feeling so well otherwise. I bet once you can breathe well you'll be feeling fantastic. :thumbsup:

JanW
03-18-2011, 07:14 AM
Good luck Bob. You will be fine. I don't know if your docs told you that you will notice the different right away, but I absolutely did right in the recovery room.

Psyborg
03-19-2011, 10:31 AM
Still no call back to schedule the surgery. I'll have to contact them next week and get it set up if I don't hear from them first. Weirdly I'm nerviously optimistic about the whole thing :)

Psyborg
03-19-2011, 12:24 PM
So now some details now that I'm not posting from my phone. The stenosis looked worse than last summer for sure. I also seem to have a weird case of it. My stenosis is all front to back, rather than around the whole diameter of the trachea. I'd have been completely closed if it was coming in from all directions. Basically the back of my trachea is actually normal, but just a little air passage there as the front has scarred back about 3/4 of the airway. So I guess I'm lucky it went that way or I may have had issues much sooner. On the flip side I wonder if the treatment isn't going as well as I thought as my specialist thought it might stop or possibly reverse progress, but alas it's not the case.

Also, evidently, the way I am blocked is actually harder to correct as the incisions are unidirectional and thus will be harder to get them to take.

Sangye
03-19-2011, 01:27 PM
That is so bizarre, Bob. What will your body think of next? :ohmy:

JanW's doc (Dr Lebovic) insists that stenosis progression has nothing to do with treatment-- ie, its progression doesn't indicate active Wegs. I hope I've got that right! Jan?

Psyborg
03-22-2011, 03:46 AM
Looks like 4/27 is the date for the surgery. All these appointments are messing up my vacation balance ;) There are worse things of course, but burning my vacation time to sit in waiting rooms is a bummer.

Psyborg
04-17-2011, 08:50 AM
So...I had an issue today. Rode my motorcycle to get service done. After going to my nieces birthday party I managed to dump the bike. For some insane reason I decided my arm should shield my helmeted head and managed to land broadside on the ground. Knocked the wind out of me and the bike landed on my foot. Seriously hope I haven't broken a rib...I don't want to give up my surgery date now :(

pberggren1
04-17-2011, 02:27 PM
Yikes! I hope you are OK now Bob. Did you have to go to the hospital? What kind of bike do you have?

vdub
04-17-2011, 02:40 PM
Dang, that's not good! Do you think your surgeons will have a sense of humor and overlook a busted rib?

Sangye
04-18-2011, 12:03 AM
Yikes! I hope you are OK now Bob. Did you have to go to the hospital? What kind of bike do you have?
Typical guy response! "Scary, hope you're okay, let's talk about the motorcycle now..." ROTFL

Sangye
04-18-2011, 12:04 AM
But seriously, I hope you're doing okay today Bob.

Psyborg
04-18-2011, 01:51 AM
ROTFL Sangye :) My first concern was my bike to be honest :)

I went to ER this morning cause the pain was pretty intense. Nothing is broken thankflully. Just heavy bruising on my ribs and foot. Got some Lortabs...that seems to take the edge off.

The bike is a Kawasaki MeanStreak 1600. Really was worried I busted it up good, but it appears to be ok. I'll need to get back on it soon...don't want to become scared of it.

pberggren1
04-18-2011, 02:14 AM
Glad to hear the bike is OK! lol :laugh:

DEE
04-18-2011, 02:42 AM
Good to hear that you and the bike are ok :rolleyes1:

Psyborg
04-28-2011, 08:40 AM
Well..once again this weird ride continues. I'm trying to keep the positive view here :) The honest truth is this is probably a blessing, but back to square one on one symptom.

Went in this morning for the dialation. Managed to stay mostly calm :)

Came out of surgery and was dumb founded. They didn't do anything, the stenosis was only 10% now. Partially this is because I apparently have a slightly enlarged area under my vocal cords above the sub-glotis, but looking at the pictures it is definitely more open than it was as well. Basically when they went in it was about 10% as opposed to closer to 60%.

Dr Villa Forte had said that it can be reversed via treatment, though everything I'd read seemed to suggest otherwise, well apparently I'm once again blessed to be responding optimally to treatment.

Only downer is that now it's becoming clear that the weezing when excercising and laying down may not have been TS related at all. I'm probably going to have a Pulmonologist visit in my future to check the Bronchial tubes. Going to wait to talk to Dr Villa Forte again on the 18th of May before I get too wrapped up in that plan.

Still a bit flabbergasted by the whole thing :)

jtausan
05-01-2011, 01:21 PM
Hello Bob,

I'm confused, they didn't do anything while you were in surgery?

Jodi

Psyborg
05-03-2011, 03:43 AM
Hello Bob,

I'm confused, they didn't do anything while you were in surgery?

Jodi

They prepped me...put me under and when they went down to do the work it was mostly better. I had previously had ~50% stenosis, and now it was down to 10%-15%. So now I'm left wondering what is causing the weezing when I breath...at 15% it should be practically unnoticeable I'd think.

jtausan
05-14-2011, 12:58 PM
Hi Bob,
Sorry it's taken me so long to respond. I am so glad that you didn't have to go through with the surgery. :rolleyes1:
Are you still wheezing?
I saw my regular Doc yesterday and after listening to my lungs I still have some wheezing too. I don't think that will ever go away. I still have a cough too, it's not as bad tho. I think that is mostly from the mucous and phlegm. I just seem to produce a lot of mucous and phlegm. yuck!
I hope you are doing well and breathing easy.
Jodi

Psyborg
05-15-2011, 08:53 AM
So far so good :) Still have weezing as well. I'm going to talk to my Rheumy this week about that.

jmmilliorn
05-16-2011, 08:53 PM
I've been having swallowing problems for over a year. I went recently to a new ENT and they said that I do not have a stricture or scarring as I thought causing my swallowing problems, but a Zenker Diverticulum. I have had one of these removed 10 years ago. I was diagnosed with WG in Jan by Dr. Villa Forte at CC. I have not discussed the swallowing problem with her because I thought it was unrelated to WG. Now after reading your posts, I think I will. I also have a chronic cough and hoarseness. Last time I was in the CC for WG symptoms I asked about the cough and hoarseness, but never got a good answer. I had bigger problems at the time. Now on RTX and feeling some better.

jmmilliorn
05-16-2011, 08:58 PM
I have the exact same childhood era phobia from having asthma. I am paranoid about breathing and have nearly choked several times with my swallowing problem. Even on some of the larger pills. My son heimliched me twice. Very scary!

jmmilliorn
05-16-2011, 09:05 PM
I've had foot cramps for over a year and didn't know why. Couldn't get an answer. This helps me. Also, I have the same problem sleeping. Have to sleep propped up to help control the coughing and drainage. I've been coughing up stuff since Jan and coughing uncontrollably at times. Cant get answers from any of my docs. My legs get so sore at night if they cross, I have to use pillows, too or sleep in a chair. I had to leave our bedroom because of the constant coughing for my wife's sake. With the steroids, I only sleep 3 hrs a night anyway and sometimes the coughing interrupts that. Man, I had no idea other people were having these same symptoms. Glad I found this forum. My doc is V-F at CC, too.

Sangye
05-17-2011, 12:03 AM
Mike, you might consider getting a torso-length wedge pillow. I got one a few months ago to help with sleep apnea and it works great. Here's (http://www.medslant.com/) the company that makes them. I couldn't find any other company that makes a torso-length pillow. The shorter wedges are very bad for you.

I have elevated intracranial pressure (complication from Wegs treatment) and it really helps with that, too. If I try to lay flat now, my head instantly fills will fluid/ pressure and it's intolerable. I can't believe how I was sleeping like that before. Sleeping in this position will probably help with your breathing.

elephant
05-17-2011, 10:20 AM
MIke, you might have Gerd ( reflux disease), that can make you cough too. Then you added the swallowing problems. I too have on and off swallowing problems...for example if I drink something it gets caught in my esophagus. I take Nexium, and that seems to help if when I am compliant. I actually didn't take it this week, so I am back taking Nexium every other day.

jmmilliorn
05-17-2011, 10:32 AM
I DO have GERD. Had it for years. It was blamed for my first Zenker's Diverticulum about 10 years ago. I kept going to my MD and he was treating my cough with asthma meds. I finally went to an allergist and he diagnosed the GERD. By then though I had a cough, sore throat AND a Zenker that kept me constantly choking on food. Had that fixed surgically and I've been taking Prilosec (2x/day) equivalents or Nexium (1X/day) since. I sleep propped up on three soft pillows or in a recliner a lot due to the cough/sinus/drainage/stuffy nose and bronchial congestion that seems a permanent fixture in my life. For the last two weeks since RTX, my cough has gotten better, and my six months of hoarseness has improved greatly. I'm encouraged. I went outside today for several hours and supervised my ranch hand from the ATV. I haven't had the strength to do this in months. (we used to work together all day) A recent visit to the ENT and a barium CT scan revealed that I do have another Zenker's D. not a stricture. Since the RTX, two weeks ago, my congestion, cough and swallowing have all improved quite a bit. Still waiting on the insurance co. to approve the 2nd infusion. Can't have the Zenker fixed right now due to the Coumadin for the blood clot in the right leg and I'm reluctant to have any surgery at all while I'm trying to get into remission. I'm still anemic and somewhat inflamed, but my SED rate is near normal. At least I haven't choked lately. I have to be pretty careful with everything I eat--especially when I'm alone.

Sangye
05-17-2011, 10:38 AM
Mike, it actually worsens GERD to sleep with pillows propped like that. It makes you bend in half and this puts pressure on the stomach. It's also terrible for your spine, which is busy relaying messages to every cell in your body. :wink1:

jmmilliorn
05-17-2011, 10:40 AM
I did not know that. Did you read that somewhere, or is that deduction/experience speaking? Thanks. What about recliners?

Sangye
05-17-2011, 10:46 AM
I'm a chiropractor.

Recliners are okay if you are not in a slumped position, because the slump puts pressure on the stomach in the same way. The slump also compresses your lungs and exacerbates coughs or difficulty breathing. Many recliners have headrests that are further forward than the spine. This is disastrous. Major cause of headaches, neck pain, etc....

Psyborg
05-20-2011, 04:59 AM
I saw Dr Villa Forte yesterday. I'm officially in remission now, not just a dropped hint in a phone call. Found out I can start dropping Pred as fast as 1mg every two weeks...basically she just said don't do it if my body doesn't feel ready yet.

My only outstanding issue is my weezing, at 10% stenosis I should not be getting this at all. So I have to go do a pulminary function test next week. I'm hoping it detects what is going on. I know I've had clear chest x-rays but I can't seem to get anyone to just do an MRI to rule things out. I know that my TS was never visible until a CT scan.

jmmilliorn
05-20-2011, 05:21 AM
That's great! I'm happy (and very envious) for you. I look forward to that great day myself. I finally got my 2nd infusion scheduled for Tues. the 24th of May. Locally. Victory over the insurance company. I have felt better every day since the first infusion three weeks ago today except for one weird day where I felt crappy. My cough is better, my personality is coming back, I'm reducing steroids slowly, my swollen right foot from the DVT is in a shoe again every day (though the leg is still swollen) and I have a little more energy than I did before the infusion. I am even a tiny bit less short of breath. Hope that continues to improve. I talked to V-F today about my infusion from the oncologist's office. She was helpful as usual. It is harder than you think to coordinate an infusion ordered by a doctor out of state.

Psyborg
05-20-2011, 05:42 AM
I'm blessed that I had a very minor case (in comparison to most on the forum). I've also always responded nearly optimally to medication, which I did here as well. I'm just hoping that I can start working to recover my lost strength next month :)

Sangye
05-20-2011, 05:44 AM
I saw Dr Villa Forte yesterday. I'm officially in remission now, not just a dropped hint in a phone call. Found out I can start dropping Pred as fast as 1mg every two weeks...basically she just said don't do it if my body doesn't feel ready yet.

My only outstanding issue is my weezing, at 10% stenosis I should not be getting this at all. So I have to go do a pulminary function test next week. I'm hoping it detects what is going on. I know I've had clear chest x-rays but I can't seem to get anyone to just do an MRI to rule things out. I know that my TS was never visible until a CT scan.
That's awesome news, Bob!! :thumbsup::w00t:

An MRI is not the best test to view the lungs-- CT is. I bet the PFTs will show what the problem is.

jmmilliorn
05-20-2011, 05:52 AM
It is a blessing. All healing comes from God through many sources. Best to you on your recovery.

Sangye
05-20-2011, 05:54 AM
Let's please remember to keep religion off the forum. Thanks.

jmmilliorn
05-20-2011, 05:56 AM
You might be successful keeping man-made religion out of something (of which I'm not a big fan anyway), but good luck keeping an omnipresent creator out of anything.

Sangye
05-20-2011, 06:02 AM
Mike, I suggest you please review the rules of the forum. You can contact Andrew if you have questions about it. Thanks.

vdub
05-20-2011, 07:40 AM
I'm blessed that I had a very minor case (in comparison to most on the forum).
I feel exactly the same way. I keep thinking that I can't possibly have WG because I'm just not sick enough and I'm not on pred or rtx or any of that other stuff. I really, really admire you guys that are so sick and seem to be handling it so well....

Sangye
05-20-2011, 08:13 AM
vdub, You've been through a lot with the damage Wegs has done. Having to be on all those different hormones for life-- that's tough stuff. I admire you.

jmmilliorn
05-20-2011, 09:40 AM
Just keep rubbing it in. We're already envious! But, I'm happy for you. I hope to join the remission club in the near future myself. I'm getting a lot of support from friends, church, and family.

Psyborg
06-13-2011, 09:36 PM
Got a call from CC on Friday, and I had an abnormal PFT. I kind of expected that result as I'm clearly having issues with breathing still. Now they think it's deeper than the trachea. I don't know what to think as the X-Rays and CT scans have all been clear in regards to the lungs. I am pretty sure it's Wegs related as the breathing was my first noticeable symptom. Just not sure that it's bad enough to worry about, I'm feeling pretty much "normal" again other than occasional pain. The tracheal area is definitely clearer now. Any coughing is coming from deeper in at this point.

jmmilliorn
06-13-2011, 10:47 PM
Man, that's too bad. I've been short of breath and coughing since the first of the year until I finished the RTX infusions. Since then, I have felt better. My only bad days have been the ones where my prednisone dose got off or was insufficient for my activity. And, I'm dealing with a blood clot in the leg. I had a nodule in my right lung in April when they did the CT scan. Will be checking that again in July to see how it has done on the RTX. I hope you improve like I did as your meds kick in.


Got a call from CC on Friday, and I had an abnormal PFT. I kind of expected that result as I'm clearly having issues with breathing still. Now they think it's deeper than the trachea. I don't know what to think as the X-Rays and CT scans have all been clear in regards to the lungs. I am pretty sure it's Wegs related as the breathing was my first noticeable symptom. Just not sure that it's bad enough to worry about, I'm feeling pretty much "normal" again other than occasional pain. The tracheal area is definitely clearer now. Any coughing is coming from deeper in at this point.

Sangye
06-14-2011, 02:15 AM
Bob, what is your doctor's recommendation at this point?

Psyborg
06-14-2011, 02:24 AM
Bob, what is your doctor's recommendation at this point?

She wanted me to come up to the Clinic to see a Pulmonologist...which I'm set for next week (23rd). She said it could be asthma, but I really think not as it started at the same time as everything else.

They also want another x-ray, which I find aggravating as the chest x-rays are ALWAYS normal for me. I just know that something isn't right, but I can't begin to figure out what it is. Th trachea improvment has helped with some of the raspiness and weezing, but there is more deeper in and I can't seem to get that through to anyone.

Sangye
06-14-2011, 02:37 AM
Dr Seo told me oftentimes the lungs don't like it when we taper down the pred really low and that you can get sort of a rebound inflammation. I've noticed my lungs are more bothered by air pollution than they used to be, which he said is typical. It doesn't mean you can't get off the pred at some point, but it may explain your symptoms now.

Psyborg
06-14-2011, 03:00 AM
Dr Seo told me oftentimes the lungs don't like it when we taper down the pred really low and that you can get sort of a rebound inflammation. I've noticed my lungs are more bothered by air pollution than they used to be, which he said is typical. It doesn't mean you can't get off the pred at some point, but it may explain your symptoms now.

I'm actually really not too upset by this, just want to get confirmation what is and isn't wrong I guess :) Feel like I've been chasing my tail a lot. And I've been lucky...I don't know how others can handle that.

I'm actually down to 4mg of Pred now as of yesterday, but I am seeming really wiped out again. I may need to go back up to 5 for another couple weeks.

pberggren1
06-14-2011, 03:14 AM
Bob, did your doc at CC say if the Pulmo might do a bronchoscopy?

Psyborg
06-14-2011, 03:40 AM
Bob, did your doc at CC say if the Pulmo might do a bronchoscopy?

No she didn't. I'd think that I'd need a driver for that though right? They didn't tell me to bring anyone. (though I probably will :o). She basically said that she's not a Pulmonologist, and i needed one to verify what the PFT even showed.

pberggren1
06-14-2011, 03:42 AM
No she didn't. I'd think that I'd need a driver for that though right? They didn't tell me to bring anyone. (though I probably will :o). She basically said that she's not a Pulmonologist, and i needed one to verify what the PFT even showed.

Ya, you probably wont have a bronch done then right away. The Pulmy will most likely want to review the PFT and your case overall before deciding what to do next.

Sangye
06-14-2011, 03:50 AM
If you're tired at 4mg, don't hang out there longer than 3 days. Otherwise it stresses your adrenals too much and you wind up having to go way back up on the pred for a long time.

pberggren1
06-14-2011, 03:53 AM
If you're tired at 4mg, don't hang out there longer than 3 days. Otherwise it stresses your adrenals too much and you wind up having to go way back up on the pred for a long time.

Or you could try some grappa. I still have half the bottle left. :wink1:

Psyborg
06-14-2011, 04:02 AM
LOL...I'll take a pinch ;)

I'll take another mg tonight when I get home and switch back to 5 for at least another week. Probably too much stress from going way up for a week due to that rash I had.

drz
06-14-2011, 05:52 AM
Glad they are going to follow up on it and help you sort it out. Hope it turns out well for you.



She wanted me to come up to the Clinic to see a Pulmonologist...which I'm set for next week (23rd). She said it could be asthma, but I really think not as it started at the same time as everything else.

They also want another x-ray, which I find aggravating as the chest x-rays are ALWAYS normal for me. I just know that something isn't right, but I can't begin to figure out what it is. Th trachea improvment has helped with some of the raspiness and weezing, but there is more deeper in and I can't seem to get that through to anyone.

Psyborg
06-15-2011, 04:20 AM
Well..I'm trying to dose again with Prednisone. I tapered the last dose too fast and the rash returned...lol. That's what I get for second guessing the doctors orders.

It now sounds (totally without any diagnosis yet) like I have minor lung involvement. I was fairly unconcerned but I've gotten 4 calls in the last 3 days from CC so obviously it's serious enough to follow up with. The weird thing is my O2 levels and such have never been low through this. Xrays are all clean. I know it's something going on because I can feel it, especially with exertion. But it feels so minor right now I'm having trouble believing the sudden push for follow up. Not sure if that makes sense. I kind of feel like maybe they stuck to TS as the diagnosis and missed something here maybe?

Sangye
06-15-2011, 04:50 AM
Bob, listen to your docs and get back there. Don't waste time. Lung involvement tends to progress slowly but you never know. If it is Wegs, waiting makes it more likely that you'll have to go on the big drugs to control it.

My O2 levels with lungs full of blood were 100% at high altitude. And 100% when they were filled with blood clots at high altitude. And 100% every time they've hemorrhaged since then. They always sound perfectly clear, x-rays either look fine or only a tiny bit of what looks like atypical pneumonia. PFTs are always good. The CT scans show the real deal. That's the only diagnostic test that is reliable for me.

Psyborg
06-15-2011, 05:14 AM
I'll definitely do what they ask. It just struck me a strange since they kept saying "Oh it's not your lungs, it's the stenosis." Continued even when the stenosis reversed it self a bit, but then they got concerned with the abnormal PFT. They seem reluctant to point at Wegs too, but I know this raspy breathing started at the same exact time as the wegs.

Sangye
06-15-2011, 11:11 AM
It can sure be frustrating. There have been times that Dr Seo didn't think it was Wegs and it was. The Wegs dog can even sneak by the specialists.

elephant
06-16-2011, 11:38 AM
Pysborg, when I had my lung nodule I failed my lung test. I didn't feel that bad. I was put on inhalers, I took them for a month or so. I was on 60 of pred and they added cellcept to the other bunch of meds that I took. I improved in time, it was the Wegeners...they confirmed it when they removed the nodule.

jmmilliorn
06-16-2011, 11:43 AM
E.
They are sure my nodule is WG related. Definitely not cancer. I already spent six wks with the oncologist. Another CT scan in July to see what is happening with it. They don't intend to remove it if the med works. Maybe the RTX helped. We'll see soon. How do they remove it?


Pysborg, when I had my lung nodule I failed my lung test. I didn't feel that bad. I was put on inhalers, I took them for a month or so. I was on 60 of pred and they added cellcept to the other bunch of meds that I took. I improved in time, it was the Wegeners...they confirmed it when they removed the nodule.

elephant
06-16-2011, 11:50 AM
At the time, the docs thought it didn't look like a wegeners nodule, but I didn't have a wegeners specialist at the time. So, I was told by a bunch of docs to remove it so they can properly diagnose me. Oh well, glad it wasn't cancer. Your lucky you didn't have to go through lung surgery. I am sure the lung nodule will strink and disapear.

Sangye
06-16-2011, 01:38 PM
Mike, they don't normally remove lung nodules caused by Wegs. The meds will shrink them and they'll disappear. It takes time.

Psyborg
06-22-2011, 10:34 PM
So I'm going on 3 weeks with a rash now. Hives...etc. When my PCP bumped up the Prednisone it went away, as I'm dropping it back to my normal levels it's getting worse. I'm suspicious that I've developed an allergy to Bactrim. I do seem to note more itchiness on the days I take the bactrim (today for instance). I have a call in to CC to see if I should try something else maybe? I know Bactrim is the favored antibiotic though.

It all developed after I got a huge dose of antibiotics with my hernia repair. I suspect it might have pushed me over the edge.

I really need to get back off the elevated Prednisone as it's seriously making my head woozy this time around. Unless that is a reaction as well... LOL

Psyborg
07-19-2011, 09:41 PM
Rash is mostly cleared up, but comes back every day at work. I'm thinking I'm allergic to something, I suspect the refinery across the street from our offices, but everyone acts like I'm nutty.

Pred is back down to 9mg, next week I drop to 8 again. I hate the fact that I had to restart the taper, but it's my fault.

1 week until the bronchoscopy. Then I'll know what is going on with the lungs (I hope). It's weird I hope they find it, and at the same I'm I have to hope it's nothing too serious (though that would probably make it harder to find). I am nervous about the Bronch procedure too, just scoping my Trachea was rough for me.

What I find oddest about the whole thing is that I have good O2 sats, and I can exert myself a fair amount before I have any problems. The issues always arise when I push that hair too far and get that ragged feeling weezing, then it all goes down hill fast for my breathing until my chest calms back down.

Psyborg
09-27-2011, 08:26 AM
After the fiasco of the last two months I'm once again back down to 20mg Pred from 40. Dropping to 15 at the end of the week. RTX seems to have helped with the Bronchs so far. Funny found my original post out here and discovered I was so happy not to have Lung involvment..when apparently I did lol. They have me on a CPAP machine now to help breathing while sleeping...seems to help a little, but it almost seems to be causing some issues too. Might just be proper airflow to the left lung finally.

jmmilliorn
09-27-2011, 08:37 AM
I'm just going to 15 tonight after my flareup in August. It has taken this long to get back down to where i was. I'm doing ok on the Cellcept so far. I can't have any more RTX for at least six months the doc said. If the Cellcept works, sometime next year I should get off all meds--if there are no further flareups. I hope your condition continues to improve without further complications, too. Maybe we'll both be celebrating remission in 2012.

Psyborg
09-27-2011, 08:44 AM
We share the same Doctor I think Mike :) Hopefully we do hit the remission soon. After the fact I don't think I was ever in remission earlier in the year. I think it wasn't until the attempted dilation that they realized my problems were down deeper in the airway. Weird how things work out. I know my left lung is never going to work as well as it did before due to the cartilage breakdown in the Bronchial tube, but just praying it doesn't get into the right side. If I get into remission it shouldn't.

pberggren1
09-27-2011, 09:53 AM
Dr. VillaForte is the doc you guys share I believe.

Donna88
03-06-2012, 09:06 AM
Bob,
Settling for a life of dilation could be worse, it will give you relief instantly. I had it dilated 6 times in one year with about 2 weeks to 4 months between, then I went 8 months between, can't figure out why some last and others don't. I find for me, my breathing is effected by food sometimes sugar makes me wheeze, so I try to cut all of that out of my diet.
do you find anything makes it worse at times or am I the only unlucky one to have Sugar be my trigger :crying:

annekat
03-06-2012, 09:19 AM
Bob,
Settling for a life of dilation could be worse, it will give you relief instantly. I had it dilated 6 times in one year with about 2 weeks to 4 months between, then I went 8 months between, can't figure out why some last and others don't. I find for me, my breathing is effected by food sometimes sugar makes me wheeze, so I try to cut all of that out of my diet.
do you find anything makes it worse at times or am I the only unlucky one to have Sugar be my trigger :crying: Sugar is a problem for me, too. If I overdo it, it can increase any of my symptoms, whether it be wheezing, sinus congestion, ear pain, or whatever. Luckily haven't had the stenosis problem as yet, and wheezing is more from sinus drainage getting into my bronchial tubes, plus I have a history of asthma.

Anne

Psyborg
03-07-2012, 01:22 AM
Since going on a cpap machine my wheezing is greatly reduced. I do get wheezing after food though, I'm going to have to start recording what I eat to see if there is a corolation.

gwenllian111
09-06-2012, 06:29 AM
I've had over 20 dilatations since 2005 - but now, I don't need them anymore. I found the surgeries very easy to tolerate, and I would be home on the same day.

Good luck, Gwen