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  • Writer's pictureKate

HI HO HI HO It's Back To The NIH I Go

NIH = National Institutes of Health in Bethesda, MD

Hi guys,

Sorry it's been awhile. Been busy despite going practically nowhere. I want to update you all so if you see an instagram post or something, you don't wonder what's going on. I tend to post a lot on instagram these days, so if you're wondering what's going on with me, check that out ;) @mypinkgenes

Ok, so a few weeks ago, I experienced some pretty intense pain in the upper right portion of my abdomen, right below my ribs. It lasted about 6 hours, and I was pretty miserable. But, it went away. I felt better and thought, "that was a weird gas pain!" About a week went by. I made some homemade, organic eggnog from scratch (nonalcoholic). I still haven't tried alcohol since being stomachless (nothing more than a few sips anyway). I just don't have the desire and I'd rather focus on nutrition I guess. Anyway, Andy and I enjoyed a glass each while spending time in our newly refreshed basement game room. Went to bed. Woke up in the middle of the night with the same pain I had felt a few weeks previously. Luckily it wasn't as intense and I was able to fall back asleep after a while of tossing and turning. The next morning I noticed my urine was really dark. Weird. I focused on hydration all day long, but my pee remained dark. Something was wrong.

I requested a visit with my primary doctor and got a video visit right away. She ordered some lab tests. After blood draws, a urine sample, and an abdominal ultrasound, it was discovered I have gallstones. The pain I experienced was a gallbladder attack. I also have elevated liver enzymes, which may or may not be solely related to the gallstones and gallbladder attacks I have been experiencing.

Today I met with a general surgeon. Let's just say, he did not instill confidence in me. I came home from that appointment genuinely scared to have my gallbladder removed. And feeling scared is a rare thing for me these days. Andy right away stated, "I sure wish you could just go to the NIH for all this." Well, I have been in touch with my NIH team throughout these gallbladder issues. So, what could it hurt to ask? Well, Dr. Davis agreed to have me worked up and have my surgery out there. My fear immediately fell away. Despite knowing I have to travel out there during scary COVID times, I am feeling grateful and at peace knowing I am in his experienced and capable hands. I am so lucky to have him, his team, and the NIH to care for me. I wish everyone could experience the type of medical care I have, and will, receive there.

I guess this experience has reinforced, I am no longer like everyone else. I am not just unique, I am a medical oddity that requires special expertise. Having no stomach, although normal to me now, is not normal. A routine gallbladder surgery for someone else, is not routine for me. Having a surgeon inexperienced with my body's anatomy perform a "routine" procedure on my non-routine innards is just not acceptable to me. That is where the fear came in, and listening to that fear is what led to me planning a trip to see the experts in everything stomachless. I also may have signed my email to the NIH team, "your favorite seahorse." It obviously worked, so I'm not sorry or ashamed.

Other than Dr. Davis agreeing to have me come out there, I know nothing else. With the holidays coming up and staff taking time off, I don't expect to hear much for a few days. And, hopefully my body will cooperate until I can get scheduled, and get out there. But, as I said, I feel good about this decision.

So, that's what I know. I want to wish you all happy holidays, and a wonderful new year. I will talk at you all soon.




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