Hello!!! I was diagnosed in 1994....

[Pugdog]

Hello to everyone. I was diagnosed in 1994. As you can imagine, I have plenty of war stories about WG. Will make it short and sweet. Treated with high dose steroids early on. Major damage to lungs, coughing blood, complete hearing loss in right ear and joint pain. Kidney failure, 11 months of dialysis and kidney transplant- from mom!!! Transplant lasted 20 yrs. started to slip into kidney failure again. Recently had second transplant July 2015. This kidney from my wife!! I'm very lucky. I managed to have successful work career, obtain two college degrees and live an eventful life- doing all this while living a second life taking meds everyday and keeping dr appts and keeping in mind that I have limitations. Finally, don't let this disease keep you down-we can do anything!! I am here for any questions and also to seek advice from others. Thanks!!!

[Pete]

Welcome to the "club", Pugdog! Sounds like you're in pretty good shape for the shape you're in.

Where are you from? What treatment are you getting now? Are the wegs drugs you use similar to what you use to prevent rejecting your kidney?

I'm coming up on five years since disease onset. I was diagnosed about a month after symptoms appeared. For the most part, I've also been able to live a near normal life. I retired about nine months before disease onset, so I have a lot more freedom about what I do or don't do. I'm currently taking 5 mg/day of prednisone and bactrim 3x weekly. I use rituximab as needed when symptoms start to appear. I have a little kidney damage, about 40% hearing loss, and some sinus and lung damage that has almost completely healed.

Hope to hear more from you about life with our dumb disease.

[Birdie]

Hello to everyone. I was diagnosed in 1994.

Welcome to the forum. What took so long to find us? It took me a few years because I was busy fighting Wegener's and didn't have time for anything else.

[Pugdog]

Hi Pete
im in Virginia. Prednisone and rejection meds help keep it controlled. Thanks

[Pugdog]

Hi birdie
in the mid late 90's -when Internet was still dial up I found online support group and it didn't last and until recently hadn't thought about looking. Last night I couldn't sleep so I searched and found you guys!! Glad I did. Reading the stories reminded me of what I have been through. Thanks

[annekat]

Welcome, Pugdog! There aren't many old-timers like you on here, maybe a couple or three others off the top of my head. I'm like Pete, coming up on 5 years since dx and doing reasonably well. Not as lucky as Pete in that I didn't get a dx until 2.5 years after the giant, weird ear infection that was undoubtedly the beginning of it all. That said, I can think of much earlier possible signs such as weird tinnitus that I never had until about age 45-48. Anyhow, luckier than you, so far, that I've gotten off without any kidney issues. Just lungs, ears, sinus cavity destruction, all that fun stuff. How cool that both your mom and your wife were able to give you kidneys! What a blessing. You have a great attitude and I expect you'll be around for many years to come, offering encouragement and support to fellow Weggies. I look forward to hearing more from you as we bounce around among the many facets and variations of having Wegs.

[woz]

Good to hear from you Pugdog, it sounds like you have had a interesting fight with the Weg monster, and have battled through the difficult times most of us have experienced, and 2 transplants to top it all off, my hat is off to you. Well done to you and your support team, its stories like this, that give hope to others when the going gets tough. All the best for the future.

Regards Woz...

[mishb]

Hi Pugdog and welcome from me, in Australia.

The best thing about this forum is that we hail from all over the world and come together at any time of the day, to talk all things WG.

I'm sure you have a multitude of stories to tell, good and bad.

I am the same as Pete and Anne, in that I have been diagnosed for just over 5 years. We have nothing on your daily life with the WG dog.

I'm glad you found us and look forward to your life experiences with WG

[Pugdog]

Thanks to everyone for the support and kind words. Looking forward to getting to know everyone.