Ok, wow...how to start-
Last year, I fell on the help of The Chive's amazing comments family. Now, it seems we have come full circle.
The origin: (cliffnotes version)
2 years ago, I started to have seizures (both petite and grand mal). The seizures led to skull fractures. The skull fractures and seizures led to violent vomiting. The vomiting led to the destruction of my LES (Lower Esophageal Sphincter [yes, fellow chivers, crack an anus joke, I know you want to]). The lack of an LES means anything that goes to your stomach can easily just come right back up the throat, but more importaintly, all the acid in there too.
So thats where I stood. A year. A year of struggling through endless endoscopy visits, scans, doctors and doctors. Relief was in sight, they could do a simple procedure and take a bit of stomach lining and tie it where the LES is supposed to be, a'wrap'. Sounds great, right? Nope. One flaw in this plan; having this done gives you a 90% chance of being unable to throw up - which totally takes it off the table. Then a doctor reached out to me. Dr. Gatmaitan. An amazing Thai-American surgeon who goes above and beyond anything you could expect.
He introduced me to something no one else in my region is doing (because none have been trained or anything). Linx. Little magnetic balls that go around my esophageus. The hiccup came after I learned I needed two other tests to comply with Linx procedure and so the Linx people can say "yes, this man really needs our little balls [insert second Chiver joke]." One was sending a rod up my nose and down my throat and measuring my swallowing strength (while being fully awake and alert. YUCK) and the other was a 'Bravo PH' test. they insert a little chip inside my throat and gets three days worth of the acidic levels in there. My insurance came back with a big 'no, F-you!' to us. This is where the Chive community came in and saved me. We had a goal of $1,800 and thanks to so many of you, it was hit and even went $100 over!!
Had the tests. Green light from Linx. Then another month of fighting the insurance and finally, a date was set, Jan 23rd!!!
Then sh*t went sideways....REAL QUICK.
On the 18th, I went in for all my pre-op joys. Including a full blood work up. After all the hospital pre-op jazz, I had a quick stop in with Dr. G to sign the final consent. While in there, he noticed something on the paperwork. The insurance forms showed the wrap instead of the Linx. Well crap...is all hope lost? Not yet! He said screw it, he was still putting the Linx in me and just not telling the insurance and doing that part pro-bono (sp?). To do this, he had to wait till the Linx rep could be available to give the sign off on a free Linx to a patient. So the date got moved to Feb 5th. Okay. Whats a few more days compared to already being a year deep into acidic hell?
Then....then it gets interesting.
I get a call from Wynn, Dr G's awesome upbeat assistant. "Leigh, we have some issues with your blood work, Ive sent it STAT to your doctor, I imagine she will call you soon, I just wanted to warn you, you might want to be sitting when she calls."
I was indeed not sitting. I was inside a store. Full of people. ....Houston, are we about to have a problem?
Then the worst call Ive ever had happened. First she spoke in all that fancy doctor jargon I am not smart enough to fully comprehend, especially in a loud building and already growing anxiety. Then the words I'll never stop hearing in my head. Its broken in my head, but i catch certain words "renal insuffeciency", "parathyroid", "blah blah calcium blah"..... wait, what does calcium have to do with this, I ask, "its whats trying to kill you" she responds.
What? WHAT? Milk isnt supposed to kill you!!! 9 out of 10 Olympic athletes drink it... That commercial is always playing! (side note - I actually rarely drink milk, just always what you think of with the word calcium)
So that leads us here to this moment. As far as they know at this moment (wont have more answers for a bit longer since apparently a slight medical emergency doesnt make Nuclear Medicine people here move any faster). Anyway, the possible theory: I have a tumor (hopefully benine) in one of my four parathyroids (or more than one) that is doing two major things: 1) sending bat sh*t crazy amounts of PTH (a hormone) through my body that creates two major mental states; depression and lack of motivation (and trust me, its nailing me...ive had suicidal thoughts these past days - DONT WORRY, I'M NOT!!! Its just the hormone causing it - and I cant find joy in anything and can barely move). and 2) creates TONS of calcium in your blood stream. Enough so, I've been teetering near the lethal numbers. Even though I'm right under the lethal amount, it is still crazy higher than it should ever be, and in turn, its killing my kidneys (see "renal insuffeciency" from earlier). Also, full on NO CALCIUM diet, which sucks because 99% of all food has calcium, from peanuts to chicken breast, so another words: I've been drinking water....and thats been it, plus I havent really even had an apitite.
So, at the moment, every other day I'm having to get blood work. Sometimes its an entire work up, sometimes just calcium checks. Some days I have it back to back. Oh, and I have to pee in a cup on most days to monitor my kidney stuff.
Then, the other day I learn my insurance is now no longer paying for my lab work, saying "it is excessive to need it done that much".......despite the doctors (yeah, doctors...I now have multiple looking at my lab results) saying it is very important, insurance just dont care.
So now its out of pocket. which my pockets are rather thin and empty. On a bright side, if I dont die, I still get my Linx surgery once I'm not such a surgery risk.
SO! A very very important person to me on the Chive comment land reached out and suggested his advice that I come in here, tell the new story, raise the goal and see if we can get the Chive Nation to rise up and help me.
In a time when I feel so damn alone, he (who will remain anonymous) reached out to me in email. It was the first smile i sincerely had in days. He is a hero to me, and a savior!
My poor wife is stressed to the brim over this, and that just adds to the mental pain I have. Each day, this disease is growing ten fold; it started with some weakness and general discomfort and has now grown into constant lower abdominal pain, daily headaches/migraines, depression, lethargicness, weight gain (12 pounds in 10 days), lack of motivation, empty voice (where you just dont even feel like speaking. Period), insomnia as well as waking every 2 hours once I can sleep. High blood pressure (my current as of ten minutes ago was 186/120 and thats on a bunch of HBP pills they have prescribed me). The calcium issue is now apparently drawing plasma from my bones and has caused all sorts of knee discomfort and I can feel the bones in my thighs actually aching. Absolutely zero sex drive (not like it matters, I'm married. ha ha). There are other symptoms too, but I cant think of them right now...oh yeah, lack of concentration is one of them. (also has taken me an entire day to type this)
So thats where I stand, a broken person hoping to be fixed. I ask for your help, something I'm embarassed and ashamed to do, but am because I trust in the advice from the person who lifted my spirits yesterday, I will forever owe you so much...maybe you can harvest my organs for the black market if I dont survive (just not the kidneys, you probably wont make much on them).
I love all of you and miss being in the comment land with you, but its hard to even overcome enough just to go into the app.... to all who read this, Chive On and Shine On and may we all one day be as strong as Joshua - The man who always makes us feel good inside the Chive!
Now, I'm gonna go take a crap ton of prescribed pills and tons of ones to help me maybe fall asleep. As I lay in bed blankly staring at the ceiling in the dark, as I have my earbuds in, drowning out my pain in EBM and tech-pop sounds, I will be thinking of all of you and how happy my life has been these last 5-6 years knowing you all and sharing in laughs together, for remembering laughs is all I have when I cant laugh.
Love you all. Thank you.
2-28 additional updates
From 2-11 to 2-16 I was hospitalized with a calcium spike over 14.6. I got to spend Valentine's in a hospital bed, I can't even begin to tell you how heartbreaking that was to not be able to do anything nice for Kris during that day. I learned, once I created over the lethal numbers that your body, aside from killing kidneys and other organs, the calcium makes you extremely bruiseable and it takes almost nothing to remove layers of skin (learned that from the heart monitor pads). I looked like a bad banana when the week was done. It was the worst I've had of hypercalcemia so far, but I've already been warned by multiple doctors that it's probably only the beginning of a hell I'm gonna go thru until they can find and fix the problem. Yay...
After the hospital, I got an amazing visit from Chiver Matt whom everyone loves and respects. Thankfully, I was still pumped full of the meds and my calcium was low enough to actually enjoy the visit. If any of you ever get the chance, you must meet this man. He is a god-send and possibly the kindest human around. Beyond awesome.
They have discovered "tons" of kidney stones coming from hypercalcemia (along with a cyst) so I have that to look forward to. Yay again.
Saw endocrine yesterday and they actually staffed me with one of the top endocrine dr's around that specializes in the area of hypercalcemia and parathyroids. He straight up told me that we are gonna have to dig into the rare disease land to maybe find what's wrong. But the most troubling was on his dr notes, he stated this was one of his 'most puzzling cases' and that he had no idea what is causing my 'severe hypercalcemia'. Triple yay... I'll admit, that alone has scared me. Not because of what I'm going to be going thru, but what it's gonna put Kris through. I love her and I hate that I'm the cause of so much pain and anxiety.
My calcium has begun it's climb again and I can feel it in my joints. Especially my knees. The abdominal pain is starting to return and we'll, but honestly, that I could care less about, I've spent so much time in just pain - this is gonna be nothing, it's just the slow decent of mobility that gets me.