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

[Birdie]

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]

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.:crying:

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. :tongue1:

A bitchin wheelchair hey, that sounds pretty awesome.

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

[andrew]

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]

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]

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

Too girly to give it a name.

[Birdie]

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.

[Birdie]

Certainly keeping those medical staff on their toes, I bet.

Hospital tip #1: At 2 am the vampires come into your room to suck blood. First thing they do is tell you your name: "John Smith?"... The correct answer is: "Naw, Sven Jorgen"... with your best swedish accent. Vampire exits room, returns 30 seconds later with nurse who tells you to knock it off...

[me2]

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!!!

[Alysia]

Welcome to the forum, Gary. I love your writing and your fighting spirit. I am sorry for your loss.
I guess the blader issues were because of the ctx.
you chair looks cool. Please update us how are you doing.

[annekat]

Welcome, Gary! I wish our "Like" button had not disappeared. Thanks for telling your story and I'm sorry you have had a much worse time of it than some of us. My heart goes out to you on the loss of your wife, on top of all of it. I want to tell you, I have met Kirk (me2), the one who has had WG for 35 years, went into drug-free remission for 20, and then flared again, and well, he looks amazingly great and appears to get around and do things in the world just like anyone else, despite his continuing struggle against a relapse. I hope that is you someday! As for SS Disability, yes, it is convoluted and can drive you crazy, but I did it and am getting benefits, and have a lot less problems than you do. So keep at it. Do keep in mind that the older you are, the more chance of success. I was 58 when I got it and am almost 63 now. I don't expect to be reviewed, since I'm at the age where I could get SS benefits anyway. If you are a lot younger, still keep at it, and send them a picture of your wheelchair, with you in it. I don't see how they could deny you, but hire a lawyer if you have to... that seems to have a higher success rate. Most lawyers for this will only collect from you if they are successful, I've heard. I did not have to hire one.

[andrew]

Too girly to give it a name.

The Green Hornet?

[gilders]

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.

[gilders]

Forgot to mention, your periodonists is more than impressive! Many of us on here were under the care of specialists that are more "relevant" to vasculitis such as rheumatologists and it's taken them a LONG time to figure out the correct diagnosis.
I must of been seen by over 15 drs before my nephrologist made the diagnosis.

Back in England we'd say "you owe him a pint". (A pint of beer that is)

[Birdie]

The Green Hornet?

Leave it to a down under'er to come up with a not so girly name.

And BTW, I'd guess it's no small task to manage this BB. Well done sir!

[Birdie]

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.

"Aortic valve disorder" is the only official sounding diagnosis I've got. From my limited understanding it's a leaking valve. It was not my main concern at the time, not even close to a priority if you know what I mean.

I also had a couple bouts of something I have no name for. Heart rate increases for no reason, blood pressure goes high, feel a pounding in the right chest, neck and head. Happens five or ten times a week for maybe ten minutes then calms down. This came up twice for a few months each time, then stopped happening. Did all sorts of tests but by the time he put me on a 24 hour heart monitor the problem had gone. It's been a year since the last occurence.

[Birdie]

Forgot to mention, your periodonists is more than impressive! Many of us on here were under the care of specialists that are more "relevant" to vasculitis such as rheumatologists and it's taken them a LONG time to figure out the correct diagnosis.
I must of been seen by over 15 drs before my nephrologist made the diagnosis.

Back in England we'd say "you owe him a pint". (A pint of beer that is)

Uhm, yes. He is certainly more than impressive. If you're in Phoenix and need help with anything, ingrown toenail to haircut or anything in between, give him a shot at it. If not for him I would not be here. I was on the verge of total ruin when he pulled WG out of his wizzard hat. I was his last patient of the day and instead of wanting to go home, he and his assistant spent an hour and a half scratching their heads, armpits and unmentionables, until he came up with the correct answer. I assume he also knows something about periodontistry(?). ---- Dr. Pete Melles ---- my pal...

Gary
The avatar is Andy, one of three rescued cockatoos who live with me.

[Pete]

Welcome to the Forum, Gary. Wow! What a ride. Glad you're doing better. Hope the improvement continues. I think your positive attitude and strong will will do you in good stead.

[Birdie]

Welcome to the Forum, Gary. Wow! What a ride. Glad you're doing better. Hope the improvement continues. I think your positive attitude and strong will will do you in good stead.

My brand of positive attitude used to be called lots of other things :) Then I got sick and it became admirable instead of quirky, unusual, odd, etc. I was once introduced as "Gary, he marches to the beat of his own drummer." No, it's a tuba.

[ThePowerCouple]

Welcome to the forum.
We are so sorry for your loss.
We were told that getting a disability attorney will help in getting disability benefits if denied the first time that you apply. We hope that you are able to get the assistance that you need.

[Alysia]

Sometimes problems with the heart, increase rate, pounding, pains etc. Can be the result of wg in the lungs. My beautiful Phil had it.

[kaysee]

"Aortic valve disorder" is the only official sounding diagnosis I've got. From my limited understanding it's a leaking valve. It was not my main concern at the time, not even close to a priority if you know what I mean.

I also had a couple bouts of something I have no name for. Heart rate increases for no reason, blood pressure goes high, feel a pounding in the right chest, neck and head. Happens five or ten times a week for maybe ten minutes then calms down. This came up twice for a few months each time, then stopped happening. Did all sorts of tests but by the time he put me on a 24 hour heart monitor the problem had gone. It's been a year since the last occurence.

Birdie, I had the same thing happening with my heart beat. Mine started one day and did not quit. Heart rate kept jumping from normal about 60 beats per minute to 150 beats per minute. The cardiologist finally determined it was tachycardia. This too can be caused by Wegener's. It can be controlled with medication and is a non=life threatening disorder of the heart.

[Birdie]

Birdie, I had the same thing happening with my heart beat. Mine started one day and did not quit. Heart rate kept jumping from normal about 60 beats per minute to 150 beats per minute. The cardiologist finally determined it was tachycardia. This too can be caused by Wegener's. It can be controlled with medication and is a non=life threatening disorder of the heart.

Ouch, sounds worse than I had. I gotta go look up that diagnosis. Thanks.

[Birdie]

I'm trying to navigate the insanity of applying for Social Security Disability. If that doesn't get approved I'm really in trouble.

Anybody remember the dance performed by little yellow bird named Woodstock?

2178

SSD was just approved.

[LCL2013]

Congratulations, Birdie!

[Birdie]

Congratulations, Birdie!

Thanks. My whole life has been centered around this since WG diagnosis, almost as big a concern as WG. I can go back to eating again now that I'll have money coming in. Even could get the leaking roof replaced... maybe.

[annekat]

Woohoo! I'm so happy for you, Gary!!! :w00t::thumbsup::hug3:

And I apologize for not sending you any pottery pics yet. I've been hit with lots of petty little BS lately and am just worn out. I will get to it when a few more spoons materialize.

[Birdie]

Woohoo! I'm so happy for you, Gary!!! :w00t::thumbsup::hug3:

I will get to it when a few more spoons materialize.

Thanks Anne, and YiPeee...

But... I'm certain I've seen pottery spoons somewhere. Just make a few.

[annekat]

Thanks Anne, and YiPeee...

But... I'm certain I've seen pottery spoons somewhere. Just make a few. Ha, ha. Yes, they exist. Will give it some thought. But every time I made a spoon, I'd be using up two, is the trouble....

[Aylasnan]

Wow Gary what an awful ride you have had and you are still managing to smile. You are a true inspiration. I am sad you lost your wife and top of everything. Thank you for helping me xx

[Birdie]

Wow Gary what an awful ride you have had and you are still managing to smile. You are a true inspiration. I am sad you lost your wife and top of everything. Thank you for helping me xx

Some things kinda suck, you just figure a way around them and move on.

So you've gota biopsy tomorrow... bring a list of questions cuz you won't think of them all when you're there and you'll need the paper to take notes.

[debra]

Birdie, hi... I was re reading you're story, and wow, its a lot... I just wanted to say, thank you, for being here, and thank you, for being you... You have been such an inspiration and help to me,and i want you to know how much I appreciate it..... I wish you nothing but the very best,cause that's what you deserve..... Keep that amazing attitude!!!!!!! You rock, Gary..... Love Deb. Xoxo XOXO.

[Birdie]

You rock, Gary..... Love Deb. Xoxo XOXO.

No doubt I'm a bit different than some people, yet everyone has their own sorta cool, cept for Putin. :)

[debra]

Except for Putin, ya. Ha ha... I love you're humor...... I'm also very sorry about Sue... No doubt a very special lady, and very lucky to have you, Gary.......... XoXO.

[Birdie]

I'm also very sorry about Sue... No doubt a very special lady

Sue was nuts, now let me think abit... where else have I seen that, recently...

[debra]

Birdie, I sure don't know? Man, you crack me up..... Xoxo XO

[Debbie C]

Birdie, I just read that you got approved for SSD........YEA !!!:thumbsup: Maybe this is just a start of better things happening for you in the new year. Like Deb said you deserve it with all you have been through.

[debra]

Hi Deb! I was cruising on by,hoping to torment Gary a little and saw u.. Hope you're good Deb.... Gary, well..........???..... Luv Deb. XoXO

[Birdie]

Birdie, I just read that you got approved for SSD........YEA !!!:thumbsup: Maybe this is just a start of better things happening for you in the new year. Like Deb said you deserve it with all you have been through.

LOL...

I don't do "LOL" very often but you're reading 4 month old posts. I just got my third SSD payment. So far it's keeping me afloat, just. I need to work for Anne learning to make pottery. Or get rich quick being a wise a**, oops, we decided ass was OK...

[debra]

Birdie, hello. It's Deb,the nut case with wegeners and big hair.. what r the chances huh? So I dropped in,to formerly apologize for an attempted hijacking...... I love u Gary...... Xo Xo

[crowneagle]

I'm also sorry about your wife. There's not much else I can say about the rest of your story other than to say "I got your back"

[debra]

Mr.C, maybe that's what u need right this second to put things in perspective, reading Gary's story and others? It helps to know you're not alone..... I stop by Gary's spot just to torment him a little, then move on to another... Ha ha....... Deb.

[debra]

Birdie! Please don't over due it, just cause you have a couple of good days... I see you kicking the weg dogs ass, all over Arizona, but take it slow. Then when he's not looking you can get him back, for getting you.... He's a sneaky son of a bit**,as I'm sure you know. Gary, you've been amazing and I want to thank you.... Every day I laugh because of you... So Gary, thank you, for all you do... You do a lot.... Gary, you're special to me. Very special, so please take care of you, cause I'm selfish, I need you around..... Ya, that's a good kind of selfish... Gary, I love you.... Deb. XoXoXo Xo.

[annekat]

Just wandered over to this thread the day after Christmas, starting to feel normal again but still very sleepy after umpteen hours of sleep. Yeah, Gary, you can find something to supplement your SSD. Help people fix up old computers? Or something more interesting than that in the tech world. You can do a lot sitting at your desk.... yeah, I know, you already do. Just want to see you stay afloat and comfortable, and the SSD will at least help. Yeah, I know, old post....