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Jun 11, 2017 Latest post:
Nov 30, 2017
Welcome to our CaringBridge website. This is where we will keep family and friends updated with all info in one place at one time. We appreciate your support and words of humor and encouragement. Thank you for visiting.
Monday, June 12th, I had my Cricopharyngeal Myotomy (say that 3 times fast). This was performed at the Mayo Clinic Phoenix Campus by a bad ass surgeon that wears expensive, fitted suits. Oh, and, he calls me from his car, so that tells me he is SUPER confident. I like him. The surgery to rectify my Zenker's went well. They were able to this endoscopically and as of now, 3 months later, I have been cleared as a "successful surgery." The Surgeon says that he doesn't plan on seeing me for years to come (hhhmmm...). I'll take the immediate wins where I can. Oh, and, that lump above my voicebox has disappeared, so that's a major win too.
Now that my throat is in a better place and I'm able to eat solid foods, it's time to get back on track with the long-term health concerns. Here is the run down of the larger medical knowns, as of now...
- Monoclonal Gammopathy of Unknown Significance (MGUS). This is a blood disorder that was found a few years ago. In short, it really is what it says, unknown. Basically, mine presents itself by mass producing Igg Kappa antibodies in my plasma. Antibodies are a good thing. They are your body's memory bank of all the foreign invaders (antigens) that come you come across. This is how your body remembers antigens and fights them, so that you don't get sick again in the future. Antibodies are a good thing when they are filed on the book shelf once, for repeated reference. Where you run into trouble is when your body starts to fill up the bookshelves with multiple copies of the same book (antibody). This is what my body has elected to do. I'm quickly filling up the bookshelves with Igg Kappa antibodies, which does a few things. First, this fills up my boookshelves, not leaving much room for other books (antibodies), lessening my immune memory to fight future infections. Secondly, this over flow of antibodies, leaves some free guys on the loose with nowhere to go. So, they (free kappa lightchains, in my case) attach to what they can. The theory is that they are attaching to different complement levels of my immune system (we won't get into complement levels here). Once they attach to these, they inhibit other actions and cause inflammatory responses. Thus, leading to my chronic pain, inflammation, and severe angioedema outbreaks. Lastly, there is a strong correlation with my particular MGUS antibodies and the development of Myeloma. You see, when someone has an MGUS, it's referred to as unknown bc it's an indicator that your immunological makeup is shifting and changing. How and when it will change is somewhat unknown. If it does fully transition, that's when we get into scary territories of cancer.
- Angioedema. This is when I have severe swelling that makes me look like I got the shit beat out of me. Think: movie scenes when someone has a crazy allergic reaction and their face blows up. Eyes swell shut, lips become a duck bill, giant eggs on the forehead, Jay Leno chin, etc. For me, this not only effects my face, but also my organs, intestines, and anywhere that skin is close to bone without cushion (which is most of my body these days). We have not figured out how to manage or minimize the angioedema, yet. This has been of great concern bc it's super uncomfortable and knocks me down for days/weeks on end each month, but also bc there is fear of it happening and cutting off my airway.
- Interstitial Granuloma Annulare. This is a case of missing skin. Not even kidding. I'm losing layers of my dermal, so that I now look old and wrinkly with saggy skin that according to Doctors will not grow back. I plan on proving them wrong once we get to the bottom of all of this.
Thank you for your love, support, and taking the time to read this.