hello all

[toni da tiger]

hello ev everyone my name tonio im from atl georgia ii have been diagnosed wit wg when i was 15 i am 22 now also had long journey to still be here now had 3 conjestive heart failures lived off cvvh machine but survived it to still be here also had recieved kidney transplant january 06 right before i graduated high school had jus got a stint put in my left arm but they didnt have to use it because i recieved the transplant but within the next year and a half my body fought it off had my ominton wrapped around my pd catherder had surgery got it removed but then got yeast infection had get cathedar in my chest went threw bout five them blood kept crossing doctors figured out i neded an adult cathader but earlier last year of 09 had a infection caused by my chest cathedar that almost killed me if i would waited few more days so now have fishila in my left arm but good news back on transplant list doin dialysis monday , wednesday, friday. IM STILL HERE 7 YEARS LATER

[elephant]

Wow Toni da tiger! You really are awesome and so strong. I love your positive attitude! What medicines are you on to control the Wegeners?

[Sangye]

Hi Tonio, I'm happy you found our group. Wow-- glad you're alive after all that! I haven't seen a case like yours--very unusual. Was it Wegs that caused your heart problems or something else? I hope you get a kidney really soon. I'm sure you have better things to do than hang out at dialysis 3 days a week!

What Wegs meds are you on?

[Doug]

336 Tonio! What a story to tell! I'm glad you are around to tell it, and I'm glad you found this forum to pass on your experiences.

[toni da tiger]

Wow Toni da tiger! You really are awesome and so strong. I love your positive attitude! What medicines are you on to control the Wegeners?
i take prednisone steroid
,coreg blood pressure
,lisinopril blood pressure
, renvela instead of phoslo
coumadin aka blood thinner cuz had pulmonary embolism/blood clot 9 months ago in right leg have get inr checked weekly

but not as many meds used have take many more when had trasplant used take rapamune and prograph

[elephant]

Toni, I had a kidney transplant in 1989, by brother donated one to me. I have been doing good, with the kidney. I am on cyclosporine, cellcept, bactrim and prednisone for the Wegeners disease and Kidney transplant. Praying you get one soon!

[Col 23]

Welcome Toni, Sounds like you've had a rough time. It gives a bit of hope to hear that you have been through so much and
still here. Wish you the best for a transplant soon.
cheers Col 23

[coffeelover]

Toni...You are a tiger and a fighter tiger. Welcome!

[jola57]

Tonio, you are afighter. I am glad you found us. Welcome

[DEE]

welcome Toni you have found the best group people to help DEEx

[lafounk2]

Hi Tonio, boy your story hits close to home. My oldest son, Josh, now 16 (diagnosed at 15 in April 09) is currently on dialysis Mon, Wed, and Fridays as well. We're hoping for transplant sometime this summer, perhaps in August. Josh had a blood clot in his left left last year which brought us to the ER which we later learned creatine was 2.6 and blood clot. Two weeks hospital stay revealed Wegener's. Josh had open heart surgery when he was 10 1/2 months old due to a hole in his heart. We thought our troubles were done there. I'm very nervous about transplant. His dad and I are not right blood types for Josh. Josh's B+ blood. Mine is AB+ and dad's A+. No family have come forward. Was your first donor a deceased or living donor? Just curious. I admire your strength and am glad you have fought this in the last 7 years. Keep fighting Tonio!

[Col 23]

Hi Tonio
welcome to the group.
Col 23

[jeriorleans]

Who do you treat with?