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Scott
09-07-2009, 01:32 AM
Hi all, I'm new here. My wife was diagnosed about three months ago. Recently she's developed a sort of wheezing sound when she's lying down. This seems to have coincided with an infection the docs think she has in her lungs for the past week or so (pneumonia maybe - she's on antibiotics since Monday). But I can't help but worry that the sound has to do with her trachea (which has not been affected by her wegs previously as far as we know). Pulmonary breathing tests seemed to tell the lung doc that it isn't her trachea, but still I'm concerned. Sometimes she needs to belch but it's hard to get it out, and there's been some vomiting lately too. Any advice is appreciated... Thanks. -Scott

Jack
09-07-2009, 02:11 AM
Hi Scott,
I'm sure someone will be along soon with some more specific information for you, I have no experience of trach problems myself. However, I felt I must reply when I saw the suggestion of an infection being the cause. This could indeed be the case and a sputum test should identify it rather than trying random antibiotics. The trouble is that Wegener's also presents itself with the same symptoms as an infection, but they do not respond to antibiotics and things can easily get worse if not checked.
Don't let the doctors go down the route of chasing an infection that is not there.

Sangye
09-07-2009, 03:11 AM
Hi Scott,
Welcome to the group! I don't know about trach stuff, either. Others on here do, and can probably help you out.

I second what Jack said about infection vs. Wegs. After being hospitalized several times over the past 3 months with endless antibiotics in-between, we finally figured out it was Wegs activity in my lungs, not pneumonia. It's very tricky business. Being immune-compromised we're susceptible to atypical pneumonia. But Wegs can look exactly like atypical pneumonia on CT scan! This is what happened to me, and it wasn't until I started coughing up blood that we realized it. Even with a Wegs specialist, it was incredibly difficult to tell.

All that time (and still, because we don't have it under control yet), whenever I lay down on my side my lungs make a very strange sound as I exhale. Like sitting on a leather cushion-- the whoosh as it compresses. You can hear it in the room. It only lasts a minute or two. Not a wheeze, but a whoosh. Your wife definitely needs to have everything properly evaluated.

Scott
09-07-2009, 05:08 AM
Thanks guys for your replies. I'll talk to the doctor about the sputum test when we see him on Tuesday. Sangye, did that test help diagnose your current difficulties? I should add that my wife is currently on pred and cytoxan - not sure if that paints a clearer picture or not. Thanks again... -Scott

Sangye
09-07-2009, 05:23 AM
I wasn't coughing up sputum, so they couldn't test it.

My Wegs doc dx'ed the flare by a combo of :
1) coughing up blood
2) abnormal chest CT-- worsening despite weeks of antibiotics
3) other symptoms of active Wegs (extreme fatigue and weaknesss, sweats)
4) lack of response to prolonged antibiotics
all of which led to :
5) A bronchoscopy, which demonstrated alveolar hemorrhage. But because there wasn't a lot of blood present and my inflammatory markers were normal, the non-Wegs rheumy and pulmonologist discharged me with a dx of bronchitis. When my Wegs rheumy found out the next day, he hit the roof.

Doug
09-07-2009, 06:22 AM
Scott-

I had the same issue when lying down. It was something that went away after my lungs cleared up and I stopped hacking out coagulated blood in gelatinous lumps shaped like and about the size of banana slugs. Not a pretty description, nor a pleasant thing to have happen.

I didn't, however, have the tracheal stenosis issue.

It took approximately five weeks of hospitalization in three hospitals to achieve that improvement in my lungs, with four weeks of Cytoxan (dosage ?- administered by IV) & Prednisone (80mg/day) therapy plus a week of dialysis, a day off, a day of dialysis plus plasmapheresis, a day off, and another day of dialysis and plasmapheresis. It was the day between the two days of dialysis and plasmapheresis that I realized that the veil of death had lifted, that I felt I had reached the point where I was starting the process of healing, rather than continuing the fight against death. (Sorry to be melodramatic but those of us who've been through it probably all can identify with that moment, perhaps in the way I describe.)

Prior to that, I had an unproductive cough, post nasal drip (blood and mucus- gad!) that surely contributed to or accounted for the crap coming out of me. I don't know if the lungs, which were a third full of infiltrates, contributed to the gelatinous masses coughed up, but it seemed, when these coagulated masses loosened up enough to come out that the coughs that brought them up came from deep in my chest.

Like other WG issues, you can see there isn't one answer very often, and each person's experience can vary from the others.

Cytoxan and Prednisone are a fairly stiff combination for a variety of reasons. The Cytoxan can cause vomitus, and you should mention the problem to her doctor (if she doesn't), so he can adjust her medications or prescribe something for the stomach upset.

Sangye
09-07-2009, 07:43 AM
My initial dx of Wegs was different than what I described above-- closer to Doug's experience, at least along the "veil of death" aspect (great description, Doug!). I only described my current flare. Nowhere near as good material for a movie script. :D

Doug
09-07-2009, 11:44 AM
My initial dx of Wegs was different than what I described above-- closer to Doug's experience, at least along the "veil of death" aspect (great description, Doug!). I only described my current flare. Nowhere near as good material for a movie script. :D


I also speak of my WG experience as "kissing Death on the lips and living to tell about it". Now that's Hollywood if nothing else! What's that vampire movie that's so big now? Like that only with bloodly, little slugs taking over your lungs. Could work!

Scott
09-08-2009, 07:06 AM
Thanks again guys. Her cough seems to be improving and we didn't hear that wheezing sound as much last night, so maybe (hopefully) the docs got lucky with the antibiotics. The vomiting has continued but it seems like it's mostly liquid coming up - I almost think she's just having trouble keeping the water down that she's supposed to drink for the cytoxan. She's always hated that. Doctor appt. tomorrow...

(Still curious about trach. sten. symptoms if anyone else has any input.)

Thanks again. -Scott

Gwenllian
09-08-2009, 07:32 AM
Sounds as if it could be a problem with the trachea. I find it much worse lying down with my tracheal stenosis, but also, on any kind of exertion, ie. walking, getting up, going up and down the stairs, etc etc.

Ask for lung function tests to be carried out (and interpreted properly!), and a CT scan of the neck.

Check out www.tracheal-stenosis.com (http://www.tracheal-stenosis.com) where there's a forum, advice etc.

Good luck x:)

Doug
09-08-2009, 10:35 AM
Thanks again guys. Her cough seems to be improving and we didn't hear that wheezing sound as much last night, so maybe (hopefully) the docs got lucky with the antibiotics. The vomiting has continued but it seems like it's mostly liquid coming up - I almost think she's just having trouble keeping the water down that she's supposed to drink for the cytoxan. She's always hated that. Doctor appt. tomorrow...

(Still curious about trach. sten. symptoms if anyone else has any input.)

Thanks again. -Scott

At the absolute worst, I had a session of vomiting, where I counted 18 (!) eruptions in a row. I was so tired and sore toward the last that I was crying. I hope your wife continues to improve, that the vomiting is brought into control. There are times you can't imagine where the material being brought up came from, or what's next (the stomach???!).

I was stupid about bring it to my doctor's attention, so suffered needlessly in this regard.

Make sure her doctor is aware of the severity of the vomiting and the frequency the next time your wife sees him/her. As mentioned before, if she is at a weight that is right on the line of requiring more or less Cytoxan, her doctor may have decided on the higher dosage to determine how heavy a dose she can handle, with the expectation that issues like vomiting would help him/her adjust the dosage to a level adequate to bring her WG into line.

(p.s. all I had to do to trigger vomiting was to take my medication with cold water; like your wife, I was trying to drink lots of water, as directed, and used a 28 oz.[roughly 0.95 liter] glass; lukewarm water helped for pill-taking for me)

Sangye
09-08-2009, 10:43 AM
With my current flare, my doc started me on 150 mg ctx, which is well below the weight-adjusted dose for me. He felt it would be strong enough to get things under control. He's extremely conservative about using these drugs, given their short and long-term effects. The ctx is not really working, though. Much as he (and I) would like to increase the dose, my blood counts are too low, which means my body couldn't tolerate more. That's why he's looking into ritux for me.

But back to vomiting: I've always had a question about it, but have never known who to ask. When you're vomiting throughout the day (for example) how do you answer the question "How many times did you throw up?" Is it once for every time you ran to the bathroom, or once for every time something comes up?

Doug
09-08-2009, 12:37 PM
As a guy (i.e. Overly enthralled with icky bodily functions, fluids, wastes, and damn proud of them!), I count each instance of something emptying from my stomach as one instance. So, the day I counted 18, it was only one trip to the toilet bowl. That same day, I went a second time around 20-30 minutes later, and managed to toss my boots five more times in a row. It was mostly fluid then, but the last two were globs of mucus. I suspect, by then, the only thing left in my stomach was a black hole. :( Total for that 24 hour period, then, 18 + 5 = 23, in two trips. The second trip happened because I drank more cold water, to rehydrate myself.

Sangye
09-08-2009, 12:54 PM
Well, then I have seriously been under-reporting my barf episodes! No wonder ER docs would roll their eyes at me when I'd say I'd been throwing up all day and only reported 5 or 6 episodes. I should go back and revise all my medical records. I want full credit for those days. ;)

Doug
09-08-2009, 01:01 PM
This is what comes of being a Quality Analyst in my working life: you need to define you data in a way that no one can fault your analysis, and no one can claim you didn't say, "I told you so!" It's a hard, hard, mean, scrappy, unctuous-breeding sort of life best suited to people who, in almost 36 years of it, can say, smiles all around, "I'm retired! I just don't care!" and mean it in the most scathing, smug, mean-spirited sense of it. "I told you, you ignored it, you don't have me to ignore anymore! Tah! Tah!" :):):)

Scott
09-09-2009, 05:15 AM
Thanks Gwen, much appreciated!

jola57
09-10-2009, 09:30 AM
Yesterday I had my usual night strata meeting and at the tail end had to tail it out of there pronto, fortunately they are all old people and understand my predicament and had a kind lady volunteer her bathroom. My montuzuma's revange strikes anytime anywhere. Fortunately (or not depending on how you look at it) I never had the barfies except when I had the burst appendix. Then I spent the whole night hugging the toilet and dry heaving every 5 minutes.

Sangye
09-10-2009, 09:32 AM
So how many times did you throw up? :rolleyes:

jola57
09-10-2009, 09:36 AM
from 9 pm to 8 am every 5 to 10 minutes

Cindy
11-08-2009, 03:36 AM
I having been having difficulty with my pills getting stuck in the back on my throat! I have an appointment on Monday to see my sinus and throat doctor. Scarey!

coffeelover
11-09-2009, 05:33 AM
Scot,

My name is Lisa and I am a regular on this sight, but have not been visiting more than 2-3 times a weeks lately. So I just realized you were asking for help with stenosis. I'm you gal!
I had stenosis and even had to wear a trach for 7 1/2 months, so maybe I can answer any questions you may have. I know for me they did some tests to determine the extent of my stenosis (which was bad btw). It was determined that I was breathing through an opening about the size of a stir stick straw prior to my surgery (ies) My surgery for stenosis was Oct 20, 2008. The scariest day of my life....but it turned out to be a good thing and very uneventful, so do not fear it, it helps!
I did have to wear a trach for 7 1/2 months which I fought the first two months but them came to accept the trach more and more. I got it taken out in June of this year, the day before my daughters graduation party! If I was told I'd have to have it in for the rest of my life, I could have lived with that. But of course, now that it is out...I do not want it back in!

Things are not perfect yet and I am still on that dreaded pred along with MXT and other counteractive to the pred meds (eg folic acid, zantac etc)
My trouble now seems to be mainly in my sinuses and yes sometimes my throat seems to swell, but I know it is not my trach because I can still do hills and steps and a brisk walk without passing out as I did prior to my surgery. It is primary allergy season for me right now (harvest time and farmers digging out those plants with allergen floaties all over) so with my list of excuses (one of the reasons I got so bad to begin with) I am hoping for more clear nasal and sinus cavities in the future.

Currently to answer a post from Sangye, I am awaiting blood test results, then if there is a potential for problem, I will be looking for a Weg specialist who also specializes in ENT business in Rochester, MN. That is only a few hours away from my home. I am feeling great otherwise and I do sinus rinses twice a day if not more and that seems to help.

Any questions...direct them my way.

LIsa Coffeelover

Doug
11-09-2009, 07:41 AM
I can vouch for Lisa's remarkable endurance. When visiting here, her husband and I had to scold her for running all over the place at Carhenge, including going up and down hills! This was a month or less after getting the trach out. If I hadn't known she had WG, I'd never have guessed it!:)