November 2015 - new diagnosis

[Middlesista]

Thank you Debra - I do live north of Boston and have family in New Hampshire.

Nothing to to feel foolish about at all - so many facts around here can be hard to keep things straight....

[debra]

Middlesista,hi! Deb again I also have all the eye problems,in fact my right eye protrudes forward now,Birdie is this what u ment? But its only because I have well let's just say past MORONS not treating me!!! You're eyes will be fine with treatment,I'm sure... Be thankful u have doctors taking u serious, I'm coming up to four years may untreated and active Wg! Guessing five in all... I pray for all us here.... Deb. Who wishes the weg dog would take a hike!

[debra]

Middlesista,hi! It's a small world. I won't ask on this thread,as I don't want to invade you're privacy.... Deb. Dreaming of bora bora again, and noticing not one member on here from there....

[Birdie]

Geez Birdie - "pop like a grape" - not what anyone wants to hear about their eye!

It's a very scary thing but also a very survivable thing. You just have to be vigilant, don't ignore symptoms, educate yourself and constantly be on the look out. Once it's controlled you can't become complacent.

[Middlesista]

Birdie. - love the positive vibe.

Just got a look through a bunch of my diagnostic testing. No outward lung symptoms yet CT scan had those cavitary nodules that got me into trouble when they did the biopsy (as I have mentioned a million times) - I ask myself how can I have those nodules sitting in my lung yet be with no symptoms of lung disease and how long did I have the fool things?

Been working hard using Incentive Spirometry to try and wean myself from oxygen - levels drop and HR goes up so have to be careful. Think I will feel so much better when this hemothorax and pleural effusion is healed

[Birdie]

Birdie. - love the positive vibe.

What else ya gonna do? Worry don't help, it actually hurts, puts yer thinkin in dissaray. And since Wegener's is controllable MOST of the time then people just need to LEARN as much as possible to make the best possible decisions, daily, hourly, in every facet of life... it's true I tell ya!

I ask myself how can I have those nodules sitting in my lung yet be with no symptoms of lung disease and how long did I have the fool things?

When diagnosed I had lung golf balls and didn't have a clue. They were granuloma and developed in less than six months. Mostly gone three months after treatment, all gone, bye bye... in six or eight months.

Here's a picture of a friend of mine.

O2.jpg

If you don't have one then get a good one. My first two, under $40.00 each, didn't last long.

[Pugdog]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

i worked for 17 yrs with WG and kidney tx. I recently "retired" after successful 2nd transplant. By the way, hearing loss in my right ear was the first symptom I remember noticing. I had lung biopsy in 94 I still remember the pain from that. Get your WG under control and stable before working.

[mishb]

Hi Middlesista and welcome, I love the name. I am also one

As you have already found out, the people on here are awesome, they can tell you anything that you want to know.

So glad that you have found us, and sorry I'm late in catching up, I have different sleeping and waking times that you guys


Take care and .......

[Middlesista]

Birdie - so glad that your "golf Balls" are gone - and no symptoms either from them

i do have a pulse oximetry that I keep handy to try and keep my numbers up. Where u on oxygen during the process at all?

[Middlesista]

Max - I had hearing loss two years ago but the pieces were not connected at the time and now as I read about GPA and I know my inflammatory markers have been elevated for years it starts to come together

i guess i am I am not sure if the SOB that I am dealing with now is from GPA or the lung biopsy problem. My breathing was fine before I ended up with the hemothorax so I tend to lean toward that but who knows