View Full Version : Weird Breathing Thing

06-02-2009, 01:06 AM
I've noticed a very odd sound when I breathe at night. I can't make any sense of it, and I'm wondering if anyone has experienced this, too. It started a few weeks ago when I had pneumonia.

When I lay down on my side at night, as I exhale it sounds like my breath continues coming out even though I'm not exhaling more. It sounds like when you sit on a leather cushion-- the sound as it compresses. Or like someone breathing out a trach. Lasts a good 2-3 seconds. It isn't pulsating, like how you hear your heartbeat in your ears sometimes.

It's definitely connected to breathing-- can't hear it if I hold my breath. It seems quite loud. I swear someone else could hear it if they were close.


06-02-2009, 07:33 AM
Asthma??? I get a wheezing noise when I'm asthmatic. Also could still be crap in your lungs from the newm....ngyu...knumoni....cold thing that you had.

06-02-2009, 07:39 AM
It's not high-pitched like wheezing. And, I'm not out of breath when it's happening. I don't hear it unless I'm laying down. It really is quite loud and odd sounding.

I was back in the hospital for 3 days last week with a cellulitis infection in my ankle. Crazy painful but responded right away to antibiotics. We did a repeat chest CT to check on the Gnu-monia (lovely image, isn't it?) and my lungs looked "not so bad." (As in not so good that the docs wanted to trade lungs with me, but not so bad that the Wegs was on the march).

I also learned that the increased Cellcept takes a month to kick in. Might help others on Cellcept to know that it doesn't act quickly like pred.

06-02-2009, 12:30 PM
I used to have that kind of labored, asthmatic business when I tried to sleep, "back in the day" (2004). It was distracting, somehow connected to that cough business. It felt like something would come up from my bronchial tubes, not my lungs. Even now I'll have moments where I try to swallow, and I feel like I can't complete the swallow. I see my pulmonologist this month, so that is something I'd like to have evaluated. I mean, after a little effort, the swallow completes itself, but there definitely is something amiss. It may be connected more to the herpes zoster aftermath than the WG, though. The herpes zoster disaster hit my face, right side, in late October-early November 2007. I still take pain medications for post herpetic neuralgia. I feel- and my pulmonologist does too- that the herpes zoster infection was precipitated by the aftermath on my immune system of WG and the treatment for same. Whew! Sorry about syntax there. What a sentence! ;):D:rolleyes:

p.s. Sangye- Your blog is brilliant! I hope others are reading it, too. It is worth the stop.

06-03-2009, 12:27 AM
(Thanks, Doug--I'm glad you like it. Are you still writing your blog? I really enjoyed it but have lost the link-- can you post it again?)

This weird breathing thing just has me stumped. In a quiet room it's pretty loud. Last night when I went to bed I wanted to test some things about it (I'm my own favorite laboratory). I feed my dogs a raw food diet, and they'd just had big pieces of chicken. One of them was laying in her bed licking her lips. It was just loud enough that it interfered with my breathing investigation. Do you ever say something out loud and then "hear" yourself? I cracked up laughing as I heard myself say, "Lotus, the chicken is gone! Stop licking your lips! I can't hear myself breathe!!"

Can you imagine what the neighbors made of that? :D

06-03-2009, 09:18 AM
I'm having a bit of a time bringing weggieboy's blog up other than through the link that opens it to me for writing. I'm working on finding the fail safe road to my blog. Regardless, you've read everything I've posted. I have another three in draft that I should work on and post just because they are close to being ready!

In the meantime, I have to encourage others on the forum to really take a look at Sangye's blog. One episode describes the insanity of dealing with an insurance company on something that should be a simple problem to resolve (two computer systems in the company, neither can "talk" with the other!) You have to read it to appreciate: 1. what Sangye had to go through to get an insurance company to acknowledge that a 2.5 mg (?) dose of Prednisone does exist (and their own pharmacy verified it!), and 2. that Sangye is a gifted storyteller. And even better example of that, though, is how her two dogs (the ones in her avatar!) became good buddies. It is a keenly observed, sensitive accounting that in lesser hands would become maudlin or cute. Sangye is a wonderful writer! Go take a look! Yes, you will be exposed to a bit of Eastern philosophy/religion, but it won't pollute or hurt you in any way. There are several sections in her blog beyond the two I describe. :)

06-04-2009, 08:54 AM
Sangye, I've had this off breathing as well. It sounds like there is extra air in my trach after I expelled my "regular" intake. It doesn't happen a lot and I have not figured out what causes it. Also it happens mostly when I am lying down. There is no pain, no shortness of breath or any other discomfort just this extra breath.:confused:

06-04-2009, 11:13 AM
sangye you've reminded me off something from a couple of months ago.sue was working the late shift at the hospital so it was just me and the dogs.i was watching tv and i could hear breathing but i could not figure where it was coming from.i thought it was the dogs but it sounded too close to be them also they were both asleep and breathing normally.it sounded like a single breath out but separate from my own breathing pattern.this happened a couple of more times in the following days then stopped.i put it down to my imagination but now you've got me questioning that.

06-04-2009, 11:47 AM
I'm going to see my hematologist on Friday and will ask him. He's a clever guy.

Meanwhile, it is possible that we're all nuts. The same kinda nuts, too. Someone should study us.

06-04-2009, 05:09 PM
mmmmmm a nutter or a weggie ? given a choice i think i'd choose to be a nutter if i could have my life back.

06-05-2009, 08:05 AM
I've also noticed a weird breathing sound. It's almost like a whistling noise.

I've also been congested in the upper lungs or bronchial area for the last few days.

06-09-2009, 08:45 AM

It almost sounds like I sounded with the trach (and now with the hole still somewhat there). It must have something to do with your sinus cavity.

It is strange, but not unusual for us Weggies to have these odd symtoms.

06-09-2009, 08:52 AM
I asked my hematologist last Friday. It was great. Though he had no idea what it was, he totally took it seriously and listened with genuine interest. Not the "Oh, boy, here's another crazy symptom" that I've become so accustomed to. I couldn't believe that he believed me, you know?

06-09-2009, 09:38 AM
mmmmmm a nutter or a weggie ? given a choice i think i'd choose to be a nutter if i could have my life back.

Me too, John, damn straight, no sxxx, no question, no argument, in a blink, faster than you can say Jackie Robinson, right now! (Of course, some of use are cursed with both fatal conditions!) :p:rolleyes::):eek: