Wegener's sucks... (in case someone didn't already know)

**Birdie** · 07-29-2015, 06:05 PM

Seems to be the thing to do here, so I'll continue the tradition by whining out my story for anyone to read...

April 2012 I had been slipping down a strange slope for five months, with seemingly unrelated medical problems which had no apparent connection (except in hindsight). Hands crippled by extreme pain (veins being attacked). Upper respiratory issues so severe as to be indescribable (I was passing out due to lack of oxygen). Tissue... uhm... abnormalities... in my mouth which were so severe there was discussion of pulling all my teeth before they fell out, and then amputating half of my jaw. Mild chest pain from both heart and lung areas. Swelling in legs and feet. Extreme fatigue. Also a mild case of general ugliness, but that predates Wegeners.

So... the periodontist (absolute dedicated genius) spent an hour and a half looking into my mouth for the third or fourth time when he said: "I need to take a tissue biopsy and send it to a lab in California." He had just figured it out from memory of a patient long ago, and wanted confirmation before telling me. Biopsy result and positive C-ANCA confirmed Wegener's diagnosis. My symptoms were already extreme but rapidly escalated, three days later I was in the hospital.

The hospital emergency room started treatment of 150mg cyclophosphamide and 80mg prednisone. Four hours later I was eating a grilled ham and cheese sandwich (making you hungry?) had fries too. It had been two months since I ate anything close to solid so this looked like instant cure (hospitals don't take much time to explain things to patients). For three days they put cameras anyplace they'd fit and used every imaging machine they owned to scan every part of my body, often more than one time. They took tissue biopsy of, uhm, all over. Worst damage was to lungs, heart and upper respiratory. Veins recovered almost instantly and I felt great on that much prednisone, at first, I'm sure anyone here knows that story.

A month later my wife was diagnosed with breast cancer. She survived it in 1999 and now it was back in her bone marrow. A year later, summer of 2013, I'd been in the hospital 7 times and was not very hopeful. Lungs recovered, heart never will, fatigue is awful but I had managed to work just enough to keep my job and health insurance, all while taking care of my very sick wife. By then I had survived more life threatening issues than I can remember, including massive blood clots everywhere but my toenails. Deep vein thrombosis, blood clots breaking loose and passing through my heart only to get lodged in lungs and back of my brain. Good news is at that time I was hardly using the wheelchair because fatigue had become less an issue, and the multiple DVT(s) in my legs were finally less painful.

Sue died in June of 2013. August 2013 I developed bladder issues. I had a live in volunteer nurse who kept taking me to the ER. Spent most of that month in the hospital learning that what they call a catheter is actually the size of a garden hose. Lost my job because I had no legal job protections remaining, no prognosis, and no guess at when or if I'd ever be able to return to work... Spent six months recuperating from the bladder problem, never got a real diagnosis as to what the problem was, no doctor would stick his neck out to guess on that one.

I was rehired February 2014 as soon as I got a release to work. Keep in mind that this entire time I have been battling one infection after another. By March of 2015 the infections had drained me and prednisone destroyed whatever wasn't drained (down to 5mg, traded cyclo for azathioprine). At one point I went blind five times in one week, need glasses now but eyesight is nearly stable. There have been so many issues that eyesight seems trivial. Did I start by warning that I would whine out my story?

March 2015, sinus infection didn't respond to antibiotics which had worked numerous times before. Took Cefprozil and Methylprednisolone to kill it. Nearly killed me as well, I can't get back to anything like normal. I was unable to return to work and now rely on VA for health care (kinda not so good) and I'm trying to navigate the insanity of applying for Social Security Disability. If that doesn't get approved I'm really in trouble.

One last note... I got me a totally bitchin wheelchair now... so I can actually get groceries during less fatigued periods.

Done whining,
Gary

**mishb** · 07-29-2015, 08:34 PM

Hi Gary, and welcome.

That's a good sort of whine story with a little bit of humour in between. How you have kept up your spirits after all of that, I don't know.
What a lot of trouble you have been in. Certainly keeping those medical staff on their toes, I bet.

I'm so sorry that you lost your wife to that other condition, that sucks just as bad.

I hope you get you disability pension approved, I can't see why you shouldn't with all of those issues. I will keep my fingers crossed for you, however it gets really hard to type.

A bitchin wheelchair hey, that sounds pretty awesome.

Stick around here and I hope your whining becomes less as the months go on

**andrew** · 07-29-2015, 11:33 PM

Gary I don't know how you kept going through all that. You're a trooper. You have so much strength.

There are a bunch of people on this forum that have gone through the Social Security Disability roundabout so hopefully they will chime in and perhaps make offer some advice/suggestions.

You should post a pic of your bitchin' wheelchair - and it should have a bitchin' name too!

**me2** · 07-30-2015, 01:13 AM

Thanks for sharing your story Gary. I hope you find some better sailing on the Social Security Sea. I don't know anything about it but I have a feeling that you will become our new expert.
With proper treatment you might be surprised how much you can recover. I have had this illness for about 35 years and been fighting relapse for about 15 years. I didn't think getting better was possible.
I told people I was a recovering optimist. (I wanted to feel I was recovering so bad I had to invent THAT)

Well, life isn't perfect but I have recovered a lot of my health after all this time. I am able to work more than I have been able to for a long time and I haven't been hospitalized for months (knock on wood). I'm hoping to read about your miraculous recovery here.

**Birdie** · 07-30-2015, 04:33 AM

Originally Posted by me2

I have had this illness for about 35 years and been fighting relapse for about 15 years.

Ahhhh, now that's what I wanna hear. Long term survival is possible, even if it sucks at times. Before finding this group I only knew what I could find in medical books and online resources, mostly medical, mostly crackpot junk all clearly quoting the same source. I read hundreds of case studies and several group studies with all of it looking very grim. Nobody surviving. The day I was diagnosed, the very first google result claimed WG was 100% fatal in 2 to 3 months... I believed it given my condition after four or five months.

**me2** · 07-30-2015, 04:45 AM

Well, Birdie, it can even MORE than not suck. I had drug free remission for 20 years. Then the relapse. You will find much better information talking to the folks here then wandering around in the
internet minefield. Of course, there are some nuggets out in the mine field- that's why we risk it.

There are many very encouraging stories to be found here. Keep in mind though that many of the success stories don't hang around much- they go back to living a free range life.
Don't get discouraged because many people are talking about serious problems.
I know the better that I am doing the less time I have to spend here and I don't have crazy symptoms I need help with.
Get ya some sun glasses Gary- the future is bright!!!

**Birdie** · 07-30-2015, 04:19 AM

Originally Posted by andrew

You should post a pic of your bitchin' wheelchair - and it should have a bitchin' name too!

Too girly to give it a name.

**andrew** · 07-31-2015, 12:01 AM

Originally Posted by Birdie

Too girly to give it a name.

The Green Hornet?

**gilders** · 07-31-2015, 06:25 AM

Welcome Gary.
Long term survival is certainly possible, in fact I'd say it's more likely than the "death sentence" that is often read about online.
Long term survival, with no meds, no lasting effects and no relapses is very unlikely.
My Wegener's was diagnosed 20 years ago. In brief, I've had about 5 relapses, with a longer remission period between each relapse. I also kept returning to work, staring off with a few hours and building back up to full time. Unfortunately, after each relapse, once I've achieved remission, I never quite return to pre-relapse level of health (further damage to kidneys may be the main reason). After my 4th relapse I returned to work and couldn't manage the few hours I'd started off on. Fortunately I did qualify for Disability Benefit (I'm in the UK). Unfortunately there's a new benefit that is replacing Disability Benefit and the qualifying criteria is MUCH stricter. I also hope that when my dreaded letter comes through the door telling me I need to apply for the new benefit that I still qualify. The benefit pays for my car and most of my treatment is a 7-8 hour round trip which recently I've been doing at least 4 times a month.
Good luck with the Disability claim. Try not to get too stressed whilst you're not knowing if you're successful or not. I really do believe stress is one thing that can encourage a relapse/flare.

If you don't mind, could you write in what way your heart has been effected by Wegener's? I have painful, eptopic heartbeats and I'm due to see another cardiologist. It might help if I give if an idea of how wegeners can e cause issues with the heart.