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.
Diagnosed April 1995
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)
Diagnosed April 1995
"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.
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.
Last edited by Birdie; 07-31-2015 at 11:58 AM.
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.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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.
Sometimes problems with the heart, increase rate, pounding, pains etc. Can be the result of wg in the lungs. My beautiful Phil had it.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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