Who are the 10%?

[norcalian]

I was recently diagnosed with WG and am new to all of this - and perhaps this has already been discussed somewhere...but a statistic I've heard is that Wegener's patients today have a 90% survival rate (which is good, I guess), but who are the 10%? Is that still accurate? I know this is an impossible disease and that number is vastly improved over 20 years ago...but it seems treatable. I guess as I'm trying to understand this disease, I'm wondering under what conditions people loose the fight with Wegener's. Sorry, if this is question is a bummer...

[pberggren1]

I would suspect that within NA and Europe the survival rate is much higher that 90% now.

[norcalian]

That's true - I guess I hadn't considered the fact that the 10% statistic might be a world-wide number.

[malin]

I think perhaps the majority of people who do die from Wegs are the ones that aren't really diagnosed and didn't start treatment until it is too late?

[Kimbangu]

In the case of people who aren't diagnosed until it is too late, it's certainly likely that "Wegener's Granulomatosis" would be recorded as the cause of death. But surely for those in partial remission or whatever, ( at the time of death) the actual cause of death might be recorded as differently? - skewing the figures.

Like everything else with this sneaky disease, it's hard to get a true picture. I, too am interested in the most prevalent primary cause of death in persons suffering from WG. Is there one?

Like norcalian, sorry to be a drag by asking!

[Sangye]

Given how difficult it is to diagnose Wegs and how quickly it can become life-threatening, I'm actually surprised that it's "only" 10%. Dr Seo told me that once Weggies are dx'ed they're much more likely to die from infection than Wegs.

[Kimbangu]

Excellent point, there are probably so many who die without ever having been correctly diagnosed in the first place. But I would guess respiratory infections would be the main one.

[watersedge]

When my dad was diagnosed i remember reading the same thing, 90% survival rate and just being so happy that they had went through a week of ruling out cancer and everything else and it was treatable.
All i remember the doctors saying was that the wegener's itself was treatable, it was the cyclophosphamide that would cause the problems leaving him at high risk of infection, which it did as he caught pneumonia after his first dose, but i suppose the drugs themselves are the lesser of two evils as without them there is no hope. I think it also depends on your age and at what stage you are diagnosed. There are so many people out there with sinusitis and other complaints that have wegeners and unfortunately don't know yet. I think the disease is a lot more common, there is a guy I know in his thirties living only two doors up from my mam and he has had w.g. for years.

[Jack]

Of the people that are diagnosed and then die due to their Wegener's I get the impression that heart failure is one of the main causes. After being beaten up by the disease and the drug side effects for so many years, I certainly feel that I am at quite a high risk in this area.

[pberggren1]

I am a prime example of one that almost bit the bullet due to lung infection

[drz]

"If you can survive the treatment, things will get better" I remember this quote vividly. My impressions and guesses are something like about half of those who die, die from infections cause by treatment and allergic reactions to the drugs. The other half die from complications of the disease itself. The most common might be kidney failure causing electrolyte imbalance, pneumonia, strokes, heart attacks, internal bleeding, lung exhaustion, and when the disease attack a major internal organ like the heart, liver, brain,pancreas etc with a sudden deterioration in health before any treatment can be effective. Some people cannot accept some of the treatment due to allergies which also increase the chances of an early death.

This is really a hard post for me to write. I lucked out last year in surviving several of the above, but know that with GPA and diabetes being chronic conditions, I am extremely likely to die from either a stroke, heart attack, or infection unless i take up bungee jumping or motorcycle racing soon.

[Rini]

I have gotten the "you could die" speech several times. I also have contemplated motorcycle racing but that is totally something else.

[pberggren1]

I would like to race cars but having no hearing I don't think that is possible now.

[Rini]

I would like to race cars but having no hearing I don't think that is possible now.

this can be done, I knew blind swimmers that competed normally. There has to be a way for it to be possible if you REALLY want to do it... It gets so hot in the cars tho and the crashing... Ik the hole you could die thing gets old and kinda less dramatic the umpteenth time and makes it all the more reason to try but really the crashing dose seem inevitable for even the best, and it just cannot be fun. DO YOU DO SIGN LANGUAGE!?! it is on my to do list, like a bucket list...but I actually do it. no real order but martial arts, sign language and motorcycles are close to the top...im just so short its hard to find a bick I can afford and really like. drz do you have a things to do list? want to make one? It is a growing thing so it is not like u get to the end and its THE END .... I thought about puting tatoo on the list but I have a mark already do to this surgery and it stands BA on its own, anything else would be overkill, I want to go to hawaii and I want to take a defense class, graduate this week, do the college thing, this summer we are working on doing the ultimate cupcake, this weekend is a nonalcoholic pinia colata.

[pberggren1]

That's awesome Rini. I don't know sign language but have been offered to free lessons. I am still thinking about it. I will most likely see the surgeon that does the cochlear implants in September, so the actual surgery probably will not be until Spring of 2012 or later. I have driven race cars in the past but just for fun. I would like to do it again but the risks are high, like crahsing. I feel I don't have a total oneness with the car anymore with my hearing loss.

[Jack]

If I had not been diagnosed when I was, I would have been one of those who died from renal failure together with other organ failures.

[norcalian]

"If you can survive the treatment, things will get better" I remember this quote vividly. My impressions and guesses are something like about half of those who die, die from infections cause by treatment and allergic reactions to the drugs. The other half die from complications of the disease itself. The most common might be kidney failure causing electrolyte imbalance, pneumonia, strokes, heart attacks, internal bleeding, lung exhaustion, and when the disease attack a major internal organ like the heart, liver, brain,pancreas etc with a sudden deterioration in health before any treatment can be effective. Some people cannot accept some of the treatment due to allergies which also increase the chances of an early death.

This is really a hard post for me to write. I lucked out last year in surviving several of the above, but know that with GPA and diabetes being chronic conditions, I am extremely likely to die from either a stroke, heart attack, or infection unless i take up bungee jumping or motorcycle racing soon.

Hi Drz - thanks for posting. I'm sorry about your ailments.

I'm a bit of a control freak when it comes to my environment and what happens in my life. Especially in terms of my body. In the past, if I gained weight, i would exercise more, eat better and loose it. If I got a cold, I could take medicine and rest and be over it in a couple of days. One of the most difficult aspects of the WG Dx is that I feel that I have no control over it. So when I hear 10% - it tugs at the anxiety strings.

it sounds like most complications of WG, these days, comes from complications of the disease. It makes sense when you look at the drug info on what they give us. The whole "better of two evils" when it comes to Tx is crazy to me. But I guess it's now my new reality.

[drz]

If I had not been diagnosed when I was, I would have been one of those who died from renal failure together with other organ failures.

So do you now have a "bucket list"? Have you seen your avatar in concert? That might be one for me.

[Jack]

I've never had any real burning desire to do a particular thing so tend to just take each day as it comes and try to stay alive. I was thinking just the other day about how much my world has shrunk and now about the only thing I have or want is my family. That's probably not healthy is it?

[Sangye]

this can be done, I knew blind swimmers that competed normally. There has to be a way for it to be possible if you REALLY want to do it... It gets so hot in the cars tho and the crashing... Ik the hole you could die thing gets old and kinda less dramatic the umpteenth time and makes it all the more reason to try but really the crashing dose seem inevitable for even the best, and it just cannot be fun. DO YOU DO SIGN LANGUAGE!?! it is on my to do list, like a bucket list...but I actually do it. no real order but martial arts, sign language and motorcycles are close to the top...im just so short its hard to find a bick I can afford and really like. drz do you have a things to do list? want to make one? It is a growing thing so it is not like u get to the end and its THE END .... I thought about puting tatoo on the list but I have a mark already do to this surgery and it stands BA on its own, anything else would be overkill, I want to go to hawaii and I want to take a defense class, graduate this week, do the college thing, this summer we are working on doing the ultimate cupcake, this weekend is a nonalcoholic pinia colata.
Rini, I just love this post. You bring a wonderful, youthful and joyful energy to this forum. I'm glad you're here. :smile1:

[Sangye]

I've never had any real burning desire to do a particular thing so tend to just take each day as it comes and try to stay alive. I was thinking just the other day about how much my world has shrunk and now about the only thing I have or want is my family. That's probably not healthy is it?
I think if you're happy with it then it's perfectly healthy. Maybe Wegs has helped you see what truly matters to you and where you want to focus your energy.

[malin]

Rini, I just love this post. You bring a wonderful, youthful and joyful energy to this forum. I'm glad you're here. :smile1:

Hello Rini! I have to agree with Sangye, I've read through some of your posts and even though you're in a horrible situation, I can't help but smile n feel a positive energy coming from your posts, it's so good and uplifting to see! :)

[drz]

I've never had any real burning desire to do a particular thing so tend to just take each day as it comes and try to stay alive. I was thinking just the other day about how much my world has shrunk and now about the only thing I have or want is my family. That's probably not healthy is it?

It might be recognition of what is really important in life, relationships--not stuff. It was one of the things my illness reinforced last year. If you felt better though, what would you like to do, maybe some special activity with the family.

[CODavid]

I have read through this string twice. I guess I knew something was coming as I got my jumping out of perfectly good airplanes and riding bulls done at a young age. My docs have said that getting the diagnosis is 2/3s of the battle. Now to just stay away from the bad bugs that many out there have caught. My philosophy is we put ourselves in whatever category we normally end up in. As for me, I plan on having old age get me...many, many years from now.

[marta]

CODavid, I'm with you. I might be proven wrong but this is what I shoot for... with a whole bunch of little goals in the meantime. Right now my wedding ring dangles around my neck on my medical alert dog tags, I'd like to get my fingers skinny enough to put it back on. That's my mini goal.... and many more to come I'm sure. I too have tempted fate many times - jumping out of perfectly good airplanes, jumping off perfectly good mountains on my skis, bombing through the forest on my mountain bike at mach 10... I love getting a buzz out of life, and I've always said I love change, so the Universe offered me 'change' on a platter, so now this is what I get to play with - the biggest change of all. I'm trying to pull out the positives out of this experience and ignore the negatives (I don't know that it always works, but I try).

Jack, I love what you said. I too find that family is THE absolute most important thing to me. It was Hana who gave me strength to fight in the early days when things were sketchy (there was no way my daughter wouldn't remember her momma). It has been Brian who has given me the support that I needed to get back up and is there for me no matter what with love in his heart and a smile on his face. It's my mom and dad and my sister who have been behind me and holding me together with love and laughter and joy throughout this whole thing. Family is totally where it's at for me and I can so relate to what you speak/type.

Rini, yeah girl!!! Get that tube out, get your party dress on, finish school and start the next chapter. Motorcycle racing and tatoos hey? I like that idea. Sign language... my sister and I took it when we were still early teens so that we could talk behind my parent's backs in front of them. It was great. I've forgotten a lot of it, but it was fun. We'd tell dirty jokes at the dinner table.

[Rini]

I am just glad to have found you guys, It makes thing so much less stressful knowing i can contact you (and everyone is so friendly). Have you seen that show 1,000 ways to die? we survive so many things everyday, if i worried about it all I would live in a box and worry about that. I keep thinking I got sick because my body was not happy with all my not sleeping and stress so it through a tantrum and forced a time out. Chilling with family is a good thing for the list...for a while I had so much going on I didn't even eat dinner with mine. I may be supper sunny because i'm still on good drugs from the surgery ;)

[marta]

Funny that you say that about the time out Rini. I totally felt the same way when I got sick. I was feeling quite run down and givin'er all the time, so I thought my body forced me to chill out for a bit.

[Rini]

CODavid, I'm with you. I might be proven wrong but this is what I shoot for... with a whole bunch of little goals in the meantime. Right now my wedding ring dangles around my neck on my medical alert dog tags, I'd like to get my fingers skinny enough to put it back on. That's my mini goal.... and many more to come I'm sure. I too have tempted fate many times - jumping out of perfectly good airplanes, jumping off perfectly good mountains on my skis, bombing through the forest on my mountain bike at mach 10... I love getting a buzz out of life, and I've always said I love change, so the Universe offered me 'change' on a platter, so now this is what I get to play with - the biggest change of all. I'm trying to pull out the positives out of this experience and ignore the negatives (I don't know that it always works, but I try).

Jack, I love what you said. I too find that family is THE absolute most important thing to me. It was Hana who gave me strength to fight in the early days when things were sketchy (there was no way my daughter wouldn't remember her momma). It has been Brian who has given me the support that I needed to get back up and is there for me no matter what with love in his heart and a smile on his face. It's my mom and dad and my sister who have been behind me and holding me together with love and laughter and joy throughout this whole thing. Family is totally where it's at for me and I can so relate to what you speak/type.

Rini, yeah girl!!! Get that tube out, get your party dress on, finish school and start the next chapter. Motorcycle racing and tatoos hey? I like that idea. Sign language... my sister and I took it when we were still early teens so that we could talk behind my parent's backs in front of them. It was great. I've forgotten a lot of it, but it was fun. We'd tell dirty jokes at the dinner table.

maybe I can get my sister to try it w/ me!

[gurinbasra]

I would like to race cars but having no hearing I don't think that is possible now.

Don't let your hearing loss stop you from doing anything. Isn't there a famous race car driver that has a cochlea implant? I quite like driving "deaf", can't hear all the cars crashing behind me!! No seriously, I know I'm limited to some things with my hearing loss, so why limit yourself any way, just go and do it.

My hearing loss is so depressing that I still went to see U2 last night in Edmonton - loved it, heard it, to some extent, but it wasn't until I read about Bono's hitchiking with the hockey player that I realized what he was saying on stage - all I heard was mubble, mubble, but I don't care anymore, I'm tired of "missing out" and I wouldn't miss Bono if I was on my death bed! Push yourself, go take ASL, I did and I found some wonderful hard of hearing people that I keep in touch with now. The one thing you don't have to worry about in an ASL class is not being about to hear, my instructor is deaf and the whole class is done in ASL - and a lot of writing for us beginners with questions we don't know how to sign.

Live your life, with all your broken bits, there's still so much to enjoy! I'm still buzzed from last night 'cos I might not have my hearing but I have eye sight!!!!!

[pberggren1]

Thank you for your encouragement Gurinder.

[Sangye]

Live your life, with all your broken bits, there's still so much to enjoy!
That's a great line, Gurinder. :smile1:

[Jack]

Got to be quote of the week that has! :thumbup:

[marta]

I'm glad you quoted that Sangye, as my computer didn't let me see it. Yeah Gurinder, I love the way you put your thoughts on the screen. Glad you had a good time with Bono in E-town. Jasper next? No Bono, but I'm sure we can show you some cool stuff.

[gurinbasra]

Marta, it's been so long since we headed up that way, we usually end up in Kananaskis or Banff for our little day trip hikes. Will have to make it up to Jasper one day - my kids have only ever been up to the ice fields. Would be great to meet a kindered spirit like yourself too! How are you doing these days? Do you feel a difference with the Rituxan treatment?

[vdub]

I'm not quite sure how I missed this thread. Like someone else said, I have read through it twice.

Bucket list? Yes and no.... Yes, on days when I'm feeling good, but on bad days I think "no, I can't do that anymore". I'm hoping for some consistency once I get off the mtx.... If I get off the mtx. Maybe I'm living my own little virtual reality, but I keep thinking I'll be getting off the mtx soon and some of the aches will go away.

I will never know, but given that the GPA (we using that now?) was attacking the pituitary and hypo thalmus, I would say I had a couple weeks to live had I not been diagnosed. However, I'm not sure how the ending would have come. Probably an endocrine failure of some sort, possibly with symptom's of Addisons. Pretty sure I would have gone into a coma and then routine blood tests would have caught the problem, but not necessarily a diagnosis. So, in reality, I wouldn't actually have pegged out unless medical attention wasn't available.

One of the things on my bucket list is scuba diving.... I have no idea why, but I've always wanted to do that.

[Jack]

I don't like the name GPA, it sounds too much like one of the types of plastic I used to work with. I think I'll start a Save the Wegener's campaign! :w00t:

[vdub]

How about grannypolly..... Has kind of a homey sound to it....

[Sangye]

I don't like the name GPA, it sounds too much like one of the types of plastic I used to work with. I think I'll start a Save the Wegener's campaign! :w00t:
I will work on this campaign. I have no intention of calling it GPA, either! :laugh:

[Sangye]

I wonder if newly-diagnosed Weggies are more likely to agree to the name switch. Microscopic polyangiitis is known as MPA. As far as I know it's never had a founder's name attached to it. I wonder what they call themselves-- maybe MPAs (pronounced "em-puz")?

[marta]

Marta, it's been so long since we headed up that way, we usually end up in Kananaskis or Banff for our little day trip hikes. Will have to make it up to Jasper one day - my kids have only ever been up to the ice fields. Would be great to meet a kindered spirit like yourself too! How are you doing these days? Do you feel a difference with the Rituxan treatment?

Anytime Gurinder, we would love to have you. It's an amazing drive from your place to our place too - rated as one of the top ten drives in the world, so c'mon up.
I'm doing well. I had that one month long cold that landed in my lungs at the end, but now they've almost completely cleared up and with them my sinus issues have gone the way of the dodo. I'm so excited, it's the first time I've been able to really breathe through my nose since last October. I can almost smell things too, which is great for my family because I cook by experimentation and normally combining herbs and spices is fun, but now it's a bit of a crapshoot. I think - dare I say - the RTX is working.

Jack, I'm with you to save the name. GPA sounds to me like there's a test involved and then you get graded on how well you did and someone tells you what you can or can't do based on your GPA.... my GPA was not always exactly what I wanted when I was in university, so why deal with a GPA now. The campaign could be "Save Wegener's by destroying it" - a two pronged campaign.:wink1:

[drz]

How about grannypolly..... Has kind of a homey sound to it....

One of the alternatives I read somewhere was P ANCA positive Vasculitis or something like that which doesn't sound like much of an improvement.

I think one of the risks is being an advocate to keep the name of Wegener's is being called a Neo Nazi since his membership in the Nazi Party is apparently the only reason for removing his name from the illness he discovered. There are no allegations of any extreme misbehavior like torturing or medical experiments on people, but that he must have supported or agreed with the Nazi party.

,

[vdub]

I think one of the risks is being an advocate to keep the name of Wegener's is being called a Neo Nazi since his membership in the Nazi Party is apparently the only reason for removing his name from the illness he discovered.
Well, not to get political, but some things in history we just have to let go and get over. After 70 years, it's just no longer relevant.... It's a historical foot note that should be remembered, but not dwelled upon. Wegener's is fine with me, but so is GPA... Not a big deal. Whatever they would like. There are much bigger issues to fall on your sword over.

[norcalian]

Interestingly enough I was looking around the web for WG info earlier today and found this on wikipedia about Wegener:

"In 2006, Dr. Alexander Woywodt (Preston, United Kingdom) and Dr. Eric Matteson (Mayo Clinic, USA) investigated Dr. Wegener's past, and discovered that he was, at least at some point of his career, a follower of the Nazi regime. In addition, their data indicate that Dr. Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr. Wegener worked in close proximity to the genocide machinery in Lodz. Their data raise serious concerns about Dr. Wegener's professional conduct. They suggest that the eponym be abandoned and propose "ANCA-associated granulomatous vasculitis."[17] The authors have since campaigned for other medical eponyms to be abandoned, too.[18] In 2011, the American College of Rheumatology (ACR), the American Society of Nephrology (ASN) and the European League Against Rheumatism (EULAR) resolved to change the name to granulomatosis with polyangiitis.[3]"

It is wikipedia, so take it for whatever it's worth...It will be interesting to see if people adopt "GPA" anytime soon. I'm new to all of this, so I guess I'm not really invested either way.

[Sangye]

ROTFL "European League Against Rheumatism" http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[norcalian]

ROTFL "European League Against Rheumatism" http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

I didn't even catch that...pretty funny :laugh:

[vdub]

http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com/)
Did not know we had this option. HA! First good one of those things I have seen. Otherwise I prefer the old :-) thing. But, I've been on e-mail since about '84 on DARPANET, so old habits are hard to break....

[Sangye]

I nabbed it from a smiley website. laughing Smileys - SmileyHut.com (http://www.smileyhut.com/c-laughing-p1-smileys.html)

[vdub]

Definitely a hoot! You made my day.... :-)

[pberggren1]

Most people that were assocciated with the Nazis really did not have much of a choice. It was either that or die. So this stuff on Dr. Wegener may be partly true and/or greatly misconstrued or fabricated.

[vdub]

Or simply no longer relevant..... I think I'll stick with Wegener's.... I've always been a maverick anyway, and I'll bet most of the people on the forum will rebel as welll.

Wegner's! Wegner's! Wegener's!

Now where did I put my picket signs and black helmet? I would start a hunger strike, too, but hey, you know, it's the whole pred thing.... I guess we could do a sleep deprivation strike...... :-) I'll stay up and watch Leno, but I can't stay for Conan.....

[norcalian]

Now where did I put my picket signs and black helmet? I would start a hunger strike, too, but hey, you know, it's the whole pred thing.... I guess we could do a sleep deprivation strike...... :-) I'll stay up and watch Leno, but I can't stay for Conan.....

That is hilarious. maybe we can hunger strike for the few hours we actually sleep :D

[vdub]

hunger strike for the few hours we actually sleep
Not quite sure how that would work but in my drug altered condition I'm sure I'll make some sense of it..... :-)