Long road

**elephant** · 11-08-2009, 04:56 PM

Hi, so glad I can be here. I was diagnosed with WG july 2008. Actually the doctors think I had this for 30 years. I had a kidney transplant, nodule removed from my lung, multiple sinus surgeries. I drove 10 hours to the cleveland clinic and met Carol Langford. She is great! I am on cellcept, cyclosporine, prednisone and bactrim for the weg. Plus a bunch of other meds because of the side effects.

I have two kids and a supportive husband. Boy it has been hard on the family, but were getting thru it. I have great family support.

**coffeelover** · 11-09-2009, 06:08 AM

Welcome to the forum. I am sorry you have the disease but it sounds like you have a great attitude. That will get you through and so will your participation here. We welcome all you have to share and there is a wealth of information if you have any questions from some very qualified people on this site.

I too have kids and a supportive husband. You are right! It helps.

I hope youmove towards remission in your future.

Lisa Coffeelover

Doug · 11-09-2009, 08:47 AM

Wow! We stress positive attitudes on this forum, and you exemplify it! Anyway, I'd like to welcome you to the forum, too. I hope you feel comfortable putting in your thoughts on topics brought up by others. Some newer weggies have family members or themselves going through denial or depression, and I hope you have some insights for these people.

**elephant** · 11-09-2009, 10:23 AM

My kids are ages four and eight. They keep me busy, during the rough patchs though I had family fly in and help me take care of them. I am so greatful to have such good family support. There were times when I was on 60 mg prednisone and felt like a was going to eat the whole kitchen and the sink and felt like a crazy lady. Now I am on 7mg of Prednisone along with two other immunosuppresants.

I get on the treadmill 4 times a week for one hour, and I feel like wonder woman! I have to admit there are days I don't feel like doing anything, but I have to keep going. Anyways so much to tell, I could write a book. Thanks for the warm welcome!

**Sangye** · 11-09-2009, 10:50 AM

Hi Elephant,
Welcome to the group! How amazing that you've gone through all that with little kids to care for. Please jump in and share your story or whatever else you'd like to talk about. I'm glad you found us!

**onatreetop** · 11-09-2009, 03:28 PM

Welcome! I am a newer member also with family. 6,12,12,14, cant forget hubby , he's a child too. We also recently adopted 4 kitties. So that makes 10 of us now that depend on me.
I was lucky and caught early. Only nodgules in one lung and some blockage in hands. After four monthes of treatment I do feel better and very different. Everything is different for me now. The way I think of things and see them. no one else in my famliy is different but, They don't have or feel what we do so..... Welcome and together with all of these amazing people and there exepriences with knowledge, we will make it!!

**jola57** · 11-09-2009, 06:38 PM

Welcome to the forum. It seems that the younger generation has a super attitude even though this dreaded disease is supposed to strike the over 50 crowd. I take my hat off to you, with the youngsters full of life or angst how do you do it

Doug · 11-10-2009, 01:56 AM

Welcome to the site! Even though onatreetop and I recommend adopting kitties (or dogs) that might otherwise end up euthanized, it isn't a criterion for coming onto the site. Your nickname is a bit scary, however: I presume it doesn't refer to a recommendation you have for a pet! I'm pretty certain my lease would be broken if I tried to bring in an elephant under the "small animals" clause. Haw!

**lafounk2** · 11-10-2009, 02:21 AM

Good morning,
My oldest son, Josh, was diagnosed with WG in 4/09. His kidney function is not well and he too will need a kidney transplant at some point. The question is when. The drs say that the disease has to be in remission for 6-12 months. They're not convinced yet that Josh's disease is in remission. He's on an antibiotic currently for sinus infection. Yesterday, he had a bloody nose, but he has a little cold and is on heparin so not sure why the bloody nose. How soon after your diagnosis did you receive a new kidney? Did you have a living donor? A co-worker of mine is Josh's potential donor. Unfortunately, the tissue typing showed that the donor (Mike) had 0 out of 6 tissue types of Josh, but Josh's cells didn't attack Mike's cells so they said he is a compatible donor. Does anyone have any more information on this?