Updated status: "Honorary Weggie"

[BookNut]

Results of my bronchoscopy are in at last. I called again this week and told the receptionist that this was my third call. My husband is thrilled and I am a little frustrated....because the bronchosopy did not show anything wrong. That is good news of course. And of course I am relieved to not have Wegeners. I guess I was hoping for something that could be treated. But, basically for me this means that essentially I have to put up with the situation. I have a slight case of bronchiectasis which is a widening of an area in my lungs caused by frequent infections. It is basically untreatable - but if I can keep the damage at the current level - it probably won't be too bad. Why I find it frustrating is because the aggravating factor is sinus infections, and basically post nasal drip. A very trivial and common problem, with seemingly no meds that work for me. So - bottom line - I basically have to put up with a chronic expiratory wheeze and cough that will most likely never go away. The best I can do is get a prescription for antibiotic at the slightest sign of an infection, so that I can avoid damaging my lungs any further. Oh well. It just seems that as soon as I feel better - I come down with another infection. Last week I spent three days with fever and chills, and round the clock sleeping. When I see my allergist I will ask her about the low immune levels that the test showed. Maybe there is something that can be done about that.

Anyway...enough about my very small problems. Let me just say again how grateful I am for all your help as I waited for my results. You are an amazing group. I plan to check in regularly to see how everyone is doing, and offer any kind of help that I can. All the best to everyone!!

[mishb]

Jacquie, I'm glad you don't have WG but how frustrated you still must be.

Surely there is something that can be done.
What if you were on pred - would that fix the nose situation.
Don't forget about sinus rinses, as well, to keep the infections to a minimum.

Take care of yourself and we hope to continue to hear from you.

[Alysia]

Hi Jacquie.
not having WG is very good news !
stay with us. "honorary weggie" is nice.
dont give up looking for a treatment. I dont think you must suffer this all your life. do some search about it. I know you are really good in this things.
good luck.

[BookNut]

Thanks for the encouragement!!

Well....I keep researching and all I see for sinus problems is mostly OTC remedies. I do see a few prescription meds that I will ask about. I've tried all the OTC stuff, plus Flonase, and still constantly blow my nose. There never seems to be an end....at least until everything stops flowing altogether, and I end up with facial pain and infection. Then I end up on antibiotics and prednisone. That clears things up for 2-3 weeks, when the whole syndrome starts all over again. But of course the worst is that all that mucus, no matter how much I use sinus rinses etc. flows into my lungs and contributes to the chronic cough. Right now the expiratory wheezing is not too bad, since it is only on a deep exhalation. Mostly I sound OK. I went for a GYN exam and the doctor listened to my heart. All ok. Next she asked me to breathe in and out deeply. Immediately of course the wheezing became apparent. "OH...I'm so sorry" she said. Well...welcome to my world. It is always there. But..only when deep breathing. So...as long as I can prevent further damage I should be OK. I DO plan to have a talk with my allergist about boosting my immune system, and if she has ANY idea how to deal with the sinus syndrome.

IMPORTANT. One thing does seem to help. I recently got an acapella PEP valve. There is also another type called a flutter valve. If I use it three times a day, I am able to move some of the clogs out of my lungs. I would definitely recommend that for anyone with wheezing caused by excess mucus. It is one of the few prescriptions available for bronchiectasis and it does work. It will take about two weeks of regular use to notice a difference, so be sure to give it a good trial.

Thanks again!!

[pberggren1]

Only thing that works for me to get the mucus out of my airways is nebulizing a 0.9% saline solution.

[BookNut]

OK...Never heard of that. I DO have a nebulizer sitting unused as none of the bronchodialators ever made a lick of difference. How do you go about nebulizing a saline solution? My nebulizer does not have a mask. Do you have to use a mask? do you make or buy the saline solution? I use NeilMed sinus rinse and it helps a little. Not that much. Looking forward to hearing the details.

[pberggren1]

I have an air pump that neblizes into a mask. I steal saline syringes from the hospital.....lol

[Alysia]

walking every day helps me to clear my nose and lungs.

[annekat]

Jacquie, I'm glad you apparently don't have Wegs but am sorry you still have troubling health issues, especially involving breathing. I hope you can get some relief; that new valve sounds good. And please do keep in touch with us, both regarding your health and all your gluten free adventures!