Mayo Clinic

Where to begin? Mayo is unbelievable. I can’t wait to download my pictures. The doctors we saw were awesome and the place was top notch. Dr. Speck’s was able to pinpoint the type of vasculitis I have (WG) and offer us a plan of what to do next regarding treatment. The neurologist and neurosurgeon had different ideas regarding my brain tumor, but the neurosurgeon at Mayo had a closer opinion to what we got from the neurosurgeon at KU Med, so I think we will go with that. We know more of the risks involved with the surgery, so it does give us pause, but right now we need to focus on staying in remission with the vasculitis. Then worry about the other and how I will get through it. The International Vasculitis Symposium was a great benefit to go to while we were in Rochester! It amazed me how things all just seemed to work together to put us in the right places at the right time and to meet the right people at the right time. We had a chance to listen to many different doctors who have been studying and researching vasculitis. We also had a chance to meet people from all over (US, Europe, and Australia) who have very similar stories as mine yet were further along in the process and could help me understand more of what to expect and make sure to do/not do. I hope to keep in contact with some of the people we met. I also plan to try to get involved more with the vasculitis foundation. The work it is doing to try to get people and healthcare professionals educated is outstanding. They also help raise money to be use for research. There is no cure for vasculitis yet, but with research we can get to that point. The overall theme this past week was HOPE! While we know more of the downside of the disease, and how close I was to dying, we gained more hope that I will continue to improve and be able to control this disease. A big thank you to Joyce for everything she did for us!