New here

[kevinallen]

Hi im new here. Dont want to write my entire story but have it on here. Living as a teenager with Wegener's Granulomatosis (http://www.squidoo.com/wegeners-granulamatosis)

[Al]

Kevin--I looked up your story, and it is a doozy. And you will be dealing with this the rest of your life. (I will too, of course, but I am a relatively old guy. This shouldn't happen to anyone your age!)

Plasma exchange is often ordered when there is lung involvement, and, in my experience, is a lifesaver. For me, inflammation declined almost immediately. Interestingly, they say it also reduces the chances of relapse. (I had one anyway.)

Thanks for sharing, and welcome to our band of brothers, sisters, and malcontents!

Al

[elephant]

Thanks for sharing. Welcome to the forum.

[mishb]

Hi Kevin,
Welcome to the forum....but sorry you had to find it.
I'm glad things are now moving in the right direction for you.

Take care

[delorisdoe]

Hi im new here. Dont want to write my entire story but have it on here. Living as a teenager with Wegener's Granulomatosis (http://www.squidoo.com/wegeners-granulamatosis)

I noticed that Rini started an under 40 group on this site...I am under 40 but barely with a child and husband so I dont have much in common to join this group but I would think that you and a few other of the young members of this site could suport each other in ways us vetrans to wegeners cant. just a thought

[pberggren1]

I noticed that Rini started an under 40 group on this site...I am under 40 but barely with a child and husband so I dont have much in common to join this group but I would think that you and a few other of the young members of this site could suport each other in ways us vetrans to wegeners cant. just a thought

Which site is that Leigh?

[delorisdoe]

it is on this site phil I think I found it on my profile page maybe there was a tab for groups.

[delorisdoe]

yes phil if you go to your profile page you will see a join groups option.

[Dryhill]

Hi Kevin,

Welcome to our very select band of brothers and sisters. Like Al I am an old fogey and feel sad that you have WG so early in life.

[Sangye]

Kevin--I looked up your story, and it is a doozy. And you will be dealing with this the rest of your life. (I will too, of course, but I am a relatively old guy. This shouldn't happen to anyone your age!)

Plasma exchange is often ordered when there is lung involvement, and, in my experience, is a lifesaver. For me, inflammation declined almost immediately. Interestingly, they say it also reduces the chances of relapse. (I had one anyway.)

Thanks for sharing, and welcome to our band of brothers, sisters, and malcontents!

Al
There is a study under way investigating the use of plasma exchange for lung involvement. It hasn't been used much for lung-only involvement. It's usually reserved for severe kidney involvement. Personally I've always felt it would benefit me. Just a gut feeling. I don't qualify for the study though.

[Sangye]

Welcome to the group, kevinallen. We have a number of members under 30--many of them are newer members. You can always find lots of support here.

[pberggren1]

There is a study under way investigating the use of plasma exchange for lung involvement. It hasn't been used much for lung-only involvement. It's usually reserved for severe kidney involvement. Personally I've always felt it would benefit me. Just a gut feeling. I don't qualify for the study though.

That's been my gut feeling too Sangye.

[Al]

There is a study under way investigating the use of plasma exchange for lung involvement. It hasn't been used much for lung-only involvement. It's usually reserved for severe kidney involvement. Personally I've always felt it would benefit me. Just a gut feeling. I don't qualify for the study though.

Interesting, though in my area, the opposite seems to be true. If it were only my kidneys, I may not have had the plasma feresis. But while I was in the hospital, waiting to see what my wranglers were deciding would be the battle plan, I started coughing up blood. That settled it: That afternoon, they installed the requisite plumbing in me, and the next morning in came the machinery. By that night, I could breath, for the first time in months, without coughing. For very selfish reasons, I am a believer....

Al

[Adrina]

Welcome to the family Kevin. This site is a great place for discussions.

[RudiK]

Welcome to the group Kevin, I join the others to tell you how sorry I am that you got hit at your young age. I hope and pray that it will go into remission and stay there.
Sangye, I received three blood transfusion when I was diagnosed in April, they made all the difference in the world. It was like all the pains and bad feelings disappeared overnight.
Rudi K.

[Sangye]

Rudi, did you have blood transfusions or plasmapheresis? They are not the same. I've had a number of blood transfusions.

[Widthofacircle]

Welcome Kevin.
Brendan

[RudiK]

Hello Sangye, I received straight blood transfusions to rebuild my body's blood supply. WG had caused a reduction of blood production according to my kidney doc. For me, that was all I needed to start feeling better.

[elephant]

When my kidneys were failing my hemoglobin was 4. I too had multiple blood transfusions.

[vdub]

Sounds like you were in pretty bad shape when you were dx'ed. It is indeed bad when young people have to have this disease. Or any disease for that matter. But it sounds like you are on top of things and adjusting well. Welcome to the forum.

[Sangye]

Hello Sangye, I received straight blood transfusions to rebuild my body's blood supply. WG had caused a reduction of blood production according to my kidney doc. For me, that was all I needed to start feeling better.
The Wegs symptoms didn't feel better after I got blood transfusions, but I did have more strength. I was still quite anemic though.

[Rose Cozzette]

Hi im new here. Dont want to write my entire story but have it on here. Living as a teenager with Wegener's Granulomatosis (http://www.squidoo.com/wegeners-granulamatosis) welcome,Kevin, there was a 16 yr old teen diagnosed in the town I was in 27 yrs ago and since I knew the family, know how hard it was for him. but know that being young is a plus in the healing process so always have hope that you can improve. hugs to yu...

[kevinallen]

Thank you for all the welcomes