How does your Wegener's Affect your Family?

[elephant]

Onatreetop, you need to go to the ER and have them order a CT of the lungs. Do you have a pulmonologist? I just think you should not let this go. Sorry for nagging.....but my alarm bells are going off and have not stopped yet...
As Sangye stated before, when we are in a flare, we are more prone to blood clots...

[Doug]

Onatreetop, dang if elephant hasn't become one of the best naggers since coming on! I almost feel like I don't need to join in on the chorus BUT...! Locate a pulmonologist. The risk of blood clots runs too high for you to leave this situation to chance or a GP. Get that lung CT, like elephant says. You may be holding off because you know your family isn't able or willing to help keep up with the workload you leave, but nothing's more important than leaving it, the work, long enough to have the medical attention you need to assure that they have you long term!

[pberggren1]

I guess You're playing second fiddle to Elephant now Doug!

[elephant]

Thanks for the compliments. I'm taking a bow....can you see it... Just Kidding... Doug we still need you to nag. So you are not of the hook. Everyone adds to this forum. I learn everyday from all of you. This forum is the best, next to apple pie cobbler with some vanilla ice cream....

[Sangye]

Sorry I'm just seeing this now. One of our elder nuns died last night after complications from heart surgery on Monday.

Onatreetop, the most likely causes of your pain are :
1) Pulmonary embolism (blood clot)
2) Pulmonary pneumothorax-- collapsed lung; happens a lot with Weggies; more prone to happen after vigorous activities like cleaning.
3) Rib misalignment-- will either correct itself or you need a chiropractor to get it back in place.

#1 and #2 will cause pain and difficulty breathing. They are URGENT. If you haven't followed Elephant's advice yet, please go the ER and get a chest CT immediately. They need to use a certain protocol called "Pulmonary Angiogram" where they inject dye at a faster rate. This is the only way to look for clots. Even if you feel better today, please go.

#3 will cause knife-like pain. Pain with movement and with taking deep breath. But otherwise you wouldn't feel short of breath.

[elephant]

Sorry to hear that Sangye.
Onatreetop hope your ok.

[onatreetop]

I am okay. Saw the pulm doc today the lungs are good and clear. No more signs of nodules either. He agrees there are upper resp issues that need to be addressed and the sleep study monday asap too. Jhu on the 20th and I am calmer now and pressure and pulse down. Pain is better too with the pain med change. I can make it another week and 1/2. Have you seen Killman in the JHU group????

[onatreetop]

thank you all so much I dont know how I could get through any of this with out all of your knowledge and concern and caring! I thank you all!

[pberggren1]

Ditto----------

[timbo vic aust]

double ditto !!!!!!!!!!!!!!!!!!