Overdue Introduction

[annekat]

I want to wish you all a Happy Thanksgiving and introduce myself at the same time. My name is Anne, I'm 59 years old and live in Olympia, Washington. I was diagnosed with WG on April 12th of this year and have been reading the forum since a little before that. I've recently started posting and have connected with some of you that way and through private messages. I'm grateful for the existence of this forum; without it I would be lost, and it's time to express my appreciation.

I'm another case of delayed diagnosis. I had a severe ear infection, in both ears, in the fall of 2008, which debilitated me for a few weeks. That was followed by 2.5 years of sinus infections, hearing problems, allergy testing and shots, joint pain that came and went, all the typical stuff. I was mainly treated by a good ENT doc.

In the winter of 2011, I started having severe asthma-like symptoms on top of the sinus stuff, with a lot of coughing, some blood, some lung pain, and a seriously declining energy level. I went to a pulmonologist I'd been referred to in the past for asthma. After an xray reading, he put me in the hospital overnight for a CT scan and other tests. The scan showed numerous cavitary lesions, and the overseeing internist suggested Wegener's. That got me researching on the web, and I found the forum.

Right about that time, I discovered I had a saddle nose! Also, a lump near one ear, a swollen parotid gland. I got a quick appt. with the ENT doc, who found the hole in my septum and did a biopsy of that and the parotid gland. It came back positive for Wegener's, and I was in the pulmonologist's office when the results came in. He then and there prescribed oral Cytoxan and prednisone, which I was already on, and Bactrim DS was added a couple of weeks later. I've been under his care ever since, and things are going very well.

There are no WG specialists within 700 miles of here, but I have the info on consulting with them if necessary. I've also gotten recommendations from forum members about docs in Seattle. For now, I'm going with what I've got, since it seems to be working. My lungs are all cleared up and in good shape, and the sinus stuff has improved quite a bit, though I'm still coughing stuff up from the post nasal drip. My energy level has increased steadily and dramatically over what it was in April and May. I have no kidney involvement so far, and am thankful for that. I'm now experiencing the joys of tapering pred from 12.5mg to 10 mg. The joint pain that was suppressed by the pred has crept back in a bit, but nothing serious.

There are many more details I could go into but will save those for later. Although I'm doing well, this forum has made me well aware of the sneakiness and unpredictability of Wegs, and I'll be on my guard and be prepared to be proactive if things worsen. I look forward to interacting with all of you.

Anne

[Dirty Don]

A truly Happy TG then to you Anne. We're, wife and I, are from Beaverton, OR, but now reside in AZ...we escaped the rain...I was dx in August of this year...am trying to get things done, minor setbacks & the like keep me aware every day of my waking! But things are better to date for me. So, as to holidays like this, yes, it is a HAPPY TG...glad you're here too!! Take care Anne!

[annekat]

A truly Happy TG then to you Anne. We're, wife and I, are from Beaverton, OR, but now reside in AZ...we escaped the rain...I was dx in August of this year...am trying to get things done, minor setbacks & the like keep me aware every day of my waking! But things are better to date for me. So, as to holidays like this, yes, it is a HAPPY TG...glad you're here too!! Take care Anne!

Thanks, Don! I'm quite familiar with Beaverton, having lived in Portland for 8 years as a kid, in the southwest hills. Now I have friends in Arizona or planning to move there. I could end up there, too, I suppose! Especially looking at the wind and rain we are having lately here.

[Dirty Don]

Wow Anne! 6 degrees of what??? LOL...I grew up in St Johns...my wife went to Sunset...she didn't come out to N Portland unless she HAD to as a teen!! LOL!

AZ is a good place to be...we've done our research...politics are one thing, financial is pretty good here...retired 10 yrs ago to about 15 to 20% less expenditures on the dollar here...it's taxes mostly. We do miss the beach of course, and I miss a real seafood dinner every so often...but, Mayo Clinic & Hospital is here also, and now that I'm there with THIS, I don't think I want to stray far from them. My 'team' is incredible...and as much as I owe my life to another staff of docs at another hospital, I owe my recovery to Mayo's team (Rheumy w/ WGs interest, ENT w/same, Pulminologist) who talk about me behind my back! Are there for any reason I may need, and are as much into the education about this disease for them and me, as they are into simply treating it...anyway, with WG now, I'm not leaving this area anytime soon!! Hehe!

The best to you & yours, have a great TG!

Don

[annekat]

St. Johns doesn't ring a bell, but Sunset kind of does. I was there from about 1960-61 to 1969 and went to West Sylvan elementary and Lincoln High School. Been a long time! I hear great things about Portland these days but haven't actually been there to check it out. Happy TG to you and your family as well!

Anne

[Dryhill]

Anne, an overdue welcome to the forum. Glad to hear that things are beginning to get better.

Jim

[annekat]

Thanks, Jim! It's exciting to be welcomed by the people whose posts I've been reading. I'm sure you'll be hearing more from me soon. Best of luck with your continuing WG journey.

Anne

[elephant]

Anne, your symptoms were like mine when Wegeners hit me the second time around. I had four maxiallry surgeries and i lose some of my hearing. I am in remission and still have sinus issues. Sounds like your doing great!

[Al]

And a Hearty (formal) welcome to you, Anne! Thanks for sharing your story. You will find that there is very little modesty here, since we all have our clinical issues. Amazing that we can talk about urine tests and nasal drip, and assorted bodily anomalies, and still remain real and dedicated friends, yes?

With Don, I hope you have had a great holiday. Small world, indeed: While the others are in a tryptophan coma, I am, as it happens, overlooking the PDX runways (from across the river). Had to pass through rainy Olympia to get here. Don, sorry you are missing out on all the precipitation! (For the record, my sister lived in Portland for a few years after leaving Hawaii (her kids live in Beaverton), and now lives in another gold suburb of Phoenix. Still along the small world theme, my daughter worked for the Daily Olympian for several years when newspapers still were newspapers.

I am glad, for your sake, that you don't have kidney involvement, though the other stuff sounds plenty undesirable on its own merits. Hang in there! We've got your back. At least, we'll be your cheerleader, and nag you all the way to the clinic when necessary. Some of us might even provide the bubble wrap.

Al

[annekat]

[QUOTE=elephant;50425]Anne, your symptoms were like mine when Wegeners hit me the second time around. I had four maxiallry surgeries and i lose some of my hearing. I am in remission and still have sinus issues. Sounds like your doing great![/QUOTE

I don't know about maxillary surgeries... sounds awful! My ENT doc mentioned sinus surgery a few times before we knew I had Wegeners, but it never happened. Lately he sucked a bunch of stuff out of my sinuses. And I forgot to mention that I do have significant hearing loss due to blocked, and possibly "destroyed" Eustachian tubes, according to him. I can't afford hearing aids but received a good-quality donated one.... just had to pay for the custom ear mold, as long as I take an aid that still has warranty on it... otherwise, a couple hundred to have it checked over and warrantied, and beyond the warranty I'll have to pay to have it fixed. They are looking for one for my other ear. Yep, I'm doing pretty well, but not taking it for granted.