Hello from another newbie

[collectionbuilder]

51 year old male still coming to terms with a 2006 diagnosis
I was diagnosed in the summer of 2006 after two nose surgery's to remove pol lops and to repair a deviated septum.

[Jack]

Welcome to the Forum collectionbuilder.

[elephant]

Welcome! We are a fun bunch!

[Sangye]

Welcome, collectionbuilder! We're here for you if you need help, advice, a place to rant, or anything. I was also dx'ed in 2006 and because of endless complications I'm still coming to terms with it, too.

[Terri]

You have found the perfect site for support and info and someone who understands you.
Sometimes we laugh, sometimes we cry, we have fun and just act goofy at times. The goofiness we try to blame on our meds. Everyone is unique.
Today I have some sad news. I was reading through some back issues of V.F and came across an entry where a gentleman was asking for info concerning his situation with W.G. He had been dx in 05 and didn't feel he had ever seen a remission.(His Dr referred to it as smoldering) I knew this site would help him at least emotionally and mentally so I e-mailed him and asked him to join us on the forum.
His wife e-mailed me back and said he had passed away in Oct.....I felt sooooo bad.
I e-mailed her back saying how sorry I was to hear of his passing and she shared his journey with me.
If I get her permission, I will share it. I think all of our stories need to be shared because it might be just that little "something" that could make a difference. It makes me appreciate more of what people like Cindy and others are fighting for us to get the word out for more research.
HAPPY NEW YEAR TO ALL AND MAY 2010 BE BETTER FOR US ALL

[jola57]

Thanks Terri. In this sad moment that little something could make a difference. Even if one person is spared the outcome his passing would not be in vain. Please extend my heartfelt condolonces to his wife.

[elephant]

That breaks my heart to hear that. I would love to hear his story. My condolonces to his wife too.

[timbo vic aust]

i feel for you too terri your stomach would have sunk to your feet when you read that reply . and i felt not only for him but more so his wife cause it would have been just as hard for her a s well. i too would love to hear his story.

[Sangye]

Terri, I think that's the same guy I talked about a few weeks ago. I started a thread about it but can't remember the name. I did the same thing-- found an old VF newsletter, emailed him, got an email from his wife. He had just died-- I think 2 weeks prior. It really knocked me to my knees to read that.

[Terri]

It may be the same one Sangye. Still sad though. I must have missed your thread about it.
His wife said she would be happy for me to share his journey with the forum.
I can hear all those questions rolling around our heads but it is too late now.

This is what she wrote:
I'm more than happy to share his journey.
Doug had diabetes several years before the diagnosis of WG. However it was controlled with oral drugs. About a year before he started injections and started Enbrel fand methotrexate for what a rheumatologist said was psoriatic arthritis. As it turns out, we believe the methotrexate held off the WG from exploding into a full blown flare.
His WG was centered in his sinuses. After going thru 3 ENT's finally opted to have a deviated septum surgery. He progressively got sicker and finally hospitalized. A hospitalist diagnosed the WG. He was within hours of death, as his kidneys had shut down and his lings were compromised with WG. We had a great doc who had treated several in San Francisco.
The high doses of prednisone ballooned Doug's weight and skyrocketed his blood sugars. He was able to go back to work, although greatly reduced. Doug was a carpenter. But with some help, we were able to get him disability.
It took away alot of financial burden and helped the cost of health care - Medicare kicked in. WG is an automatic acceptance.
Unfortunately, the diabetes was definitely interferring with his treatment. His dosages of cytoxan, Prednisone, and several other drugs were monitored and altered constantly.
He had several flares in the first 3 years. There was also concern for Bladder cancer from the drugs and he had 2 screens for that.
The last year took a turn for the worst. As he went on pain meds. His body was that of an 83 year old man. He could barely walk, slept all the time, and was in constant pain in his joints and suffered from horrible headaches. That is when he reached out to the WG forum to see if anyone else had the same problems. Sadly not enough docs know the discomfort you all have on a daily basis.
He then contracted pneumonia. That and the diabetes is what finally took his life.

Feel free to ask any questions. I hope I haven't scared you. I know I used to be in wonder as I read the stories in the WG newsletter, of the folks going thru so much.
Never hesitate to question the doctors. Always be an advocate and be sure....your pain and discomfort are real. We found that several doctors couldn't understand that. His diabetic doc was the most understanding.

Always, Marje

She sounds like a wonderful lady. I will send her condolences from everyone.