Hi new from Orlando

[windchime]

Alysia, Thank you for your welcome. As I told Anne I've been blessed to have had so many asymptomatic years. I'm hoping this is just a little blip in my journey through life. Albeit a scary blip but blip none the less.

[annekat]

Anne, I use the Mucinex 1200 mg w/o the decongestant. It currently does a good job of thinning the mucus so I'm not choking on it. Yes I was blessed to be mostly asymptomatic throughout the years. I certainly look forward to feeling better eventually.

When I used it, I didn't use the one with the decongestant either. I think I was using the 1200mg. twice a day, don't remember for sure. Eventually I started picking up small bottles of generic from the dollar store, which were only 400mg. but were a good deal, just had to think about taking it more often. I'm not sure why I stopped, I guess my problems improved.... it is all a big blur. Might pick up some more and try it again, as I'm finding in the colder weather, the dryness is making things crust more. I should also make more of an effort to use sprays and gels that would keep things moister. I guess you don't have much of a problem with winter weather in FL, and here, it is nowhere near as cold as some places, as you know, but I can still tell a difference in the winter.

[pberggren1]

Cindy, I might have to try that mucinex. I have a lot of sticky mucus that is hart to get out at the bottom of the nasal passages right where it starts at the larynx. Maybe the mucinex might help this not even form there.

I think the M. Abscessus was much worse than TB. Apparently there are just over 200 cases of it documented world wide.

I have never had any stents put in. Have you? I think he dilates the same areas each time, yes.

[COWG]

Hi Cindy,

I am also new to this forum. My husband Rick has WG, and has Bronchial Stenosis, which has effected him that last year. He was diagnosed 12 yrs. ago and hadn't had any previous lung problems. He is also seeing an Interventional Pulmologist and is also doing the balloon dialations. The Dr. told us in our dry Colorado climate that the stints don't do as well.
Keep in touch with your health and treatment updates. Phil, on this forum, was the first person we "met" that also had WG w/ Bronchial Stenosis...so that has helped us. Hopefully we all can help each other.

[windchime]

For those in dry winter climates try to keep a humidifier going. My CPAP has a humidifier on it and this week about three hours after going to sleep I wake up and I'm able to cough up all kinds of stuff rather than the dry hacking cough I've had all week. Breathing is a bit easier today, but I had a good cough session at 330 this morning. I also use Dymista nasal spray. Started earlier this year. Jury is out on that since nothing seems to help my sinuses. But it is an Antihistamine and a steroid I believe. Don't quote me on that one.

The Doc thought he might put a stent in, but I think the bloody mess he found kept him from it. They only leave it in for 30-60 days to allow the scar tissue to grow then remove it. There is some kind of salt/saline thing you have to do during this time. Didn't pay much attention since I didn't get the stent. Phil since he is dilating the same area each time ask him about the stent. It might be beneficial for you.

Although the winters down here don't get as cold as up north, we do lose a lot of our humidity in the winter.

I have to say that I'm as scared right now as I was when I was 20 years old finding I had a mostly fatal disease (at that time.) Being more mature now, I hope, I have a different perspective on my own mortality than I did at 20.

Nice to meet you COWG. Good luck to your husband.

[pberggren1]

He said a stent is the last resort for someone like me. It will just create more scar tissue in that area at both ends of the stent and then the cutting process begins. Once cutting starts it is almost impossible to stop. I also admit I am scared at times. I think of death daily now, many times a day. Death of course is a good thing, but it is hard to see our loved ones pass on.

[annekat]

It is hard to think of the effect our passing on would have on those loved ones we would leave behind. Cindy, I think you have less to be scared of now that the treatments are better and many Weggies are living normal lifespans. I do realize though that you and Phil, and COWG's husband, have complications most of us don't, so I do have more respect for what you are going through than say, what I'm going through.

[windchime]

Yes our mortality certainly does come to the forefront of our minds during times like now. As I previously stated I haven't talked to my doc much about meds other than the pred I'm on. However I did express concern about the serious side effects of the meds. He said, "well the side effect of WG is death." Kinda put it all in perspective for me. A scary perspective.

Sorry to hear a stent won't work for you. Cutting is hard if you are very vascular in your lungs also.

[annekat]

Cindy, I might have to try that mucinex. I have a lot of sticky mucus that is hart to get out at the bottom of the nasal passages right where it starts at the larynx. Maybe the mucinex might help this not even form there.

Phil, the active ingredient in Mucinex is guaifenesin, which comes from a tree bark. As far as I can tell from research, and from my own experience, it is non-habit forming, has no side effects, and is not harmful in any way. I do remember reading that it works a lot better if you drink plenty of water, but you probably do that anyway. My ENT had me on it from day one at the start of all my ear and sinus issues, way before he ever knew I had Wegs. I felt it helped the mucus flow and was pretty diligent about it. At some point I got tired of buying it and thought I was enough better that I didn't need it so much. I seem to do OK without it now. If you don't notice any difference at first, I'd say stick with it since it is easy to use and has no issues, and I hope you will start noticing some improvement. As Cindy said, be sure to get the one without the decongestant added.

[windchime]

Your situation is probably still scary for you. Yes the txs have definitely come a long way. Thank the Lord. I've always lived by the saying, "If the Lord brought me to it, the Lord will get me through it." This is just a harsher test than any recent ones. I'm a survivor.