Once again I am embarking on another journey with my tracheal stenosis. On May 25th I will be undergoing another surgery on my trachea. I kind of lost count after 100 surgeries. I figured after a hundred there is no reason to keep on counting. This what I have learned from my pre-op appointment. First, since it was all new Dr. Anderson was not able to get everything he intended to get done, done. So only one side of what he cut out was able to get Mitomyacin-C. Mitomyacin-c is the cancer drug that stops cell growth. He was putting it on the areas where he cut out the scar tissues which is the cause of my stenosis. Since he was only able to put it on only half I now have proof that the medication works. The half that had the medication on it has not grown any scar tissue. It is open, but the part that he cut but didn’t put medication on last time has grown back. He gave me some measurements. Normal is 70 MM around, up and down. Mine is 11.7 vertically and 7 length wise. That makes me wonder what it was before I started all of this back in 2009.
I am so thankful, because if it wasn’t for Dr. Anderson being willing to work on my trachea and its scary condition. I wouldn’t be in this place now. I wouldn’t looking at the end of a long journey that had so many curves, high jumps, and stops to make me sick. I’m again reminded of the love that Jesus has shown me throughout this whole process. My trachea won’t be fixed, but it is going to be open enough so that I can keep breathing and appreciating everything around me. My birthday is Saturday and then 4 days later I will be having this surgery. I am looking at this as a chance to follow through on all my goals for my 43 year. To jump into gear and get rocking on what I have been called to do.
I have been thinking about all of the people I have met on-line through the Vasculitis support group who have the same trachea stenosis I have due to their Wegener’s. Many have had their ENTs just put a Band-Aid on it and not actually go way beyond the normal to help them function and breath. I know there are doctors who are just like Dr. Anderson, who are willing to go outside of the box in taking care of their patients. Who don’t view them as a reason to be freaked out by the issues of the person they are caring for, but takes the opportunity to view it has a learning experience. Here is what I want to say to those who have Wegener’s and tracheal stenosis. First, Check out Dr. Anderson’s website and if you want to have your current ENT call him and get his professional opinion. I highly recommend you do that. He is awesome, I know he will take the time. And if you live in the Washington Area or the Oregon area call him and make an appointment and see what he can do for you. Here is his information: I have his permission. He and I talked about it. I expressed my frustration from reading the messages on the support group pages about how they are being treated by their ENT’s. I feel helpless and I feel like I needed to extend a hand of hope to them. I am sure my fellow tracheal stenosis patients are frustrated by their condition and the care they are receiving for their condition too.
I am not a medical professional. I have no medical knowledge. This blog, this post is about my journey and my opinion. Seek a qualified doctor if you are experiencing any breathing issues and follow their advice. Also, if you don’t like the information you like from that doctor it is okay to either get a different opinion or share what you are learning with your current doctor. Sometimes they don’t know what is out there. If they are a good doctor they will take you and your information as a learning experience and check it out for themselves.
On another note: to whomever sent me a pulse Oximeter. I want to thank you. I appreciate the gift and your thoughtfulness.
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