BIG NEWS ....

Hey everyone! It's been a while since I last wrote.... but I have some big news!!!!!!

Yesterday (Tuesday December 22nd) I got my gastro-jejunal (GJ) feeding tube taken out ... FOR GOOD ... and I couldn't be happier.

If you didn't already know, I had a feeding tube in my stomach that used to be my main source of nutrition and hydration when I was sick. Because I wasn't able to eat normally due to my SMAS and MALS, my feeding tube became somewhat of a life line for me. It kept me from having fainting episodes and being malnourished. And while at times it caused severe pain and discomfort, I am so grateful that I had it. It kept me alive when my body wasn't working right. It kept me alive when I was misdiagnosed and none of my doctor's recommendations were working. It kept me alive when things went terribly wrong in my body, requiring an emergent open abdominal surgery.  It gave me strength to keep fighting, even when I was so weak that even thinking about getting out of bed was unimaginable. It kept me alive for so long, and I am so grateful to have had it - especially on the inconceivably horrible days that my illness brought.

Anyways, as you can see, my feeding tube helped me a lot.... so getting it taken out is easily one of the BIGGEST milestones of my entire medical journey. Since GJ feeding tubes can only be placed surgically, having it removed means a LOT more than you may think. It means that not only am I able to sustain good nutrition without using my feeding tube, but also that I am never going to need it again. When they take it out, that little hole that my tube occupied will close up - sort of like when you get your ears pierced and take your earring out right after. I've kind of been waiting for this moment for years. And knowing that there is confidence from my surgeon, GI doctor, and nutritionist makes me feel so great - especially because all three of them have been with me for nearly every step of my illness. 

At 12 pm yesterday, Dr. John Petty took out my feeding tube. It meant so much that Dr Petty removed the tube because he has been there with us for most of my health journey. I have had THREE different abdominal surgeries with him over the past two years. He saved my life, and made me healthy again. I am so blessed to say that I am officially SMAS-free, MALS-free, and finally tube-free. Cheers to that!

I spent a lot of time at WFBH over the past few years, and most of the time I felt weak and exhausted. Yesterday was different. Yesterday all I felt was joy, strength, and HOPE.  Yesterday was the day that I officially got to say good bye to SMAS and MALS and all the destruction they caused. I honestly never thought this day would come - a day where I have proven for well over 4 months that I can stay alive without any assistance from my feeding tube. I get to finally end this chapter of my life that has felt so horrible and painful for so long. I am feeling great and I am officially tubeless. Life couldn't be better.

Thank you to those of you who have consistently been a support for me and my family. Knowing that there were so many of you that were rooting for me truly helped me push forward. There were definitely moments when I felt too weak to keep pushing. And in those moments I would hear some of the kind words you said. It really helped. Thank you for that.

ALSO a big shoutout to my amazing roommates who surprised me when I got home from the hospital yesterday! It really hit me when they were holding the congrats sign that this was a HUGE milestone. It meant so much.  That's when my mom cried. 

And to those of you still fighting through these awful compression syndromes, I am rooting for you. None of this is easy, but keep pushing. There will be a day that you can say good bye to all of  the pain and discomfort these horrible compression syndromes can cause. It just takes a lot of time. You can get there.   

After three VERY long years, I can officially say that I beat positional SMAS and neurogenic MALS. If you want to read more about neurogenic MALS and positional SMAS, I hyperlinked two blog posts about each.