I wonder, if anyone knows, how those come to lose their lives to WG?
I'm sorry for posting such an emotionally emotive topic, but I just wondered how those come to lose the battle?
Thank you for reading my post.
Gwen
I wonder, if anyone knows, how those come to lose their lives to WG?
I'm sorry for posting such an emotionally emotive topic, but I just wondered how those come to lose the battle?
Thank you for reading my post.
Gwen
www.airway-stenosis-patients-association.com
Twitter @astenosis
facebook.com/airwaystenosispatientsassociation
Miss me, but let me go.
I wonder that too. My doctor throughout my treatment called me a "hard to get into remission" case of wegeners. I think 2.5 years of cytoxan proves him right. I wonder how if I was difficult than how much more difficult would someone who did not make it be. I had my share of setbacks and side effects. Interesting to ponder for sure.
lightning crashesleigh
I just read on Facebook of a lady who said her husband had just died from WG, but didn't know it at the time. So I'm thinking they must have done an autopsy and found out later. Wonder what % of those that died where actually diagnosed with it prior to death.
I think kidney failure would be the most common.
Phil Berggren, dx 2003
I too wonder about this. hmmm...
I was told by my rheumatologist that it's usually complications of medications and opportunistic infections, such as PCP (which is why I was scared when I had to deal with that a few weeks ago) that cause the deaths of WG patients. He said it wasn't too common for a Weg's patient's death to actually be caused by WG anymore. Perhaps that's just his experience...but it makes sense to me.
Oh yes, that makes sense then. I was just thinking of Wegs, not the whole patient in general.
Phil Berggren, dx 2003
www.airway-stenosis-patients-association.com
Twitter @astenosis
facebook.com/airwaystenosispatientsassociation
Miss me, but let me go.
Gwen,
I hope the cellcept will work for you. Given your intolerance of immuno suppressants, has the doctor had any ideas on some of the newer investigative treatments? If the standard stuff isn't working I'd say it'd be worth it to try something like that, of course I'm no doctor too. At any rate I'll keep you in my prayers.
~ Bob
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