My 4th Anniversary Journey with Wegener's Dx

[Jaha]

Today it has been four years since I got confirmation of having Wegs. It was a long harsh road before it was dx'd. I had been sick for 8 months or maybe longer and had been hospitalized 3 times, had lung biopsy and lung resection surgery locally and they had no clue what the high fevers and cavitated masses were. The local pulmy told me to quite being so paranoid and go live my life. Thanks to a friend whose Aunt had had wegs, she kept on me to get an apt at CC. I was so weak at the time and called CC with out even knowing what I was doing. In about a week after I called in July, they called to confirm the apt and I didn't know what they were talking about. My friend took off work to take me and sat in on the apt with me. She helped me to remember things that they asked me questions about. Dr. Culver sent for all my records, Ct scans and tissue samples. He then had a team of docs work together to verify the dx. He called me at work in late Aug 2010 and said that they were 99% sure that I had Wegener's Granulomatosis and that he wanted to have me come to CC and have some more tests and see him and a Wegener's specialist. Dr. Villa-Forte had my husband and I stay all night up there and we went back the next day to begin tx.
I am truly thankful to be alive. I am not in remission yet and have had ups and downs like everyone else. I developed other disorders along the way and deal with one day at a time. It only took me 2 years to really believe that I did in fact have a chronic illness. There has been a lot of life changes, I had to give up my business and my social life sucks, but I'm alive and my husband and I have a deeper love than ever. We have been married for 30years and thought we had been thru everything, haha! I am just trying to keep on keeping on and get stronger everyday from my journey.

[Debbie C]

Glad they were able to figure it out and you are here to enjoy life with your hubby

[mishb]

Well done Jana - being alive is an awesome thing

My 4 years since diagnosis was last month (August)

Keep on keeping on

[jlove]

I'm coming up on 2 years since being diagnosed and I think I'm just now believing I have a chronic illness. I remember when my doctor delivered the Wegeners news. He was talking and talking and talking and he just stopped and said, "Are you okay? Are you freaking out?" He might have thought I was tougher than I really was because I didn't freak out but, really, I hadn't processed the information yet. About a year and a half after that appointment, I cried in the exam room for a good twenty minutes about how I didn't feel like a normal 24 year old. Not so tough. My first instinct was to be embarrassed but it was like I reached this threshold and I couldn't continue acting like everything was okay. Having Wegeners can be hard and can make life feel unfair but we also get these little victories. The love and understanding between you and your husband is special and it's unique to you because of everything you've been through. These are the things we get to celebrate as forever-patients and, like you said, all we can do is focus on getting stronger!

[Mas78]

Jaha, I'm sorry to hear that you are still not in remission after 4 years. I remember the days of wondering if I felt bad because of Wegener's, or is it the meds. I hope you can get off the meds soon and get back to living a normal life.

jlove, I was diagnosed when I was 22, 14 years ago. it took a few years but I got down to 1 doctor visit per year with labs done every 6 months. I know that everybody is different but I hope that you can get on the doctor visit routine I have been lucky enough to have for several years.

[drz]

I too joined in 2010 after being diagnosed in April of that year. But my four year anniversary for leaving the nursing home was last week. I spent spring in the hospital and summer recovering in a nursing home in 2010 and have really enjoyed my extra bonus time I have been given and hope to keep enjoying it a lot longer. Knocking on death's door sure has a way to increase your appreciation and enjoyment of life however it may be.

Well done Jana - being alive is an awesome thing

My 4 years since diagnosis was last month (August)

Keep on keeping on

[cjhnsn29]

When reading what you wrote, I said wow. This is what I have going thru.it almost sounded like I was writting all this. I am so glad you have your husband like I do. I Also had to give up my career and most of my acquaintance. But I am like you there are people that we can at least talk to. If you ever need to talk feel free. Thanx

[Jaha]

Thanks to all, for your wonderful replies to my story. All of us on here have been thru the mill and back. It is such a rollercoaster ride with Wegs. This forum and all of you help to remind me daily how to hang tuff and to not beat myself up over little things that I can't do anymore. Drz is correct in saying that life is good no matter what. Even if you aren't able to run a marathon or climb a mountain, everyone one of us has a special appreciation for the courage that it has taken to get where we are now. Baby steps! (my doc always tells me that) Thanks again for being here.