My medical story in a netshell, 9 years in

I'm very annoyed today. I've been in so much kidney pain today that I've been in bed almost all day. So i get frustrated and get up and do something and then the pain comes back and i go back to bed. Just had a panic attack about being in bed too much. Took my anxiety meds though and they should soon start working. Being sick is stupid. I hate it so much. 

It's frustrating because how this started- it was just pregnancy gallstones. That's it! And the Drs missed it. And so I got pancreatitis, and they missed that too. Until my sister in law Kirstie finally took me to the ER ( she forced me) and I forcibly they do labs or SOMETHING, when I could tell the ER was about to write me off again. The ER notes show that he did indeed think I was exaggerating at first. 

After I insisted he do something, like at least land, the Dr noticed my stomach was jaundiced. So he did the right labs and found my pancreatitis. Good thing for the labs cause even then the radiologist said there was no pancreatitis on my CT scans. My lipase was  51,227, amylase was 4,867, ast 692 and alt was 778 when they transferred me to a bigger hospital and did repeat labs. They took out my gallbladder the next day and discharged me the following day, insisting that I would heal up and be fine. I didn't know they discharged me still with pancreatitis, lipase at 3916, amylase of 601 and really bad cmp numbers. It was my first encounter in healthcare, and I knew nothing. I didn't know they sent me home sick, until I got these numbers for the mayo clinic years later. If they'd treated me until I got better, maybe the rest of this story would be different.

Taking so long to catch the pancreatitis, and then having it so long gave me common complications from pancreatitis- superior mesenteric artery syndrome, nutcracker syndrome and median arcurate ligament syndrome. Drs missed all 3 of those complications for the next 7 ½ years. Now I am sitting here in pain freaking dealing with insurance bureaucracy to get the surgery to fix the nutcracker syndrome. 

I got the MALS fixed with surgery last year. After the nutcracker is fixed, I may still need another surgery to fix the sma syndrome. 

While the drs missed the pancreatitis complications, i developed the tertiary diseases of Primary Antiphospholipid antibody syndrome and system lupus, unspecified. It's like a nine year long nightmare, and it's so hard to keep going. Let alone to keep faith in the health care system…. I just wanna get better.

To find the SMA syndrome, nutcracker syndrome and MALS, I went everywhere- first the university of Utah,  then the Cleveland clinic, then the university of Minnesota. The latter was supposed to be good at figuring out idiopathic pancreatitis cases, which was where I was at after my second pancreatitis hospitalization. They didn't figure out my pancreas, but a radiologist did find the lessened sma angle, and suggested sma syndrome and possible nutcracker syndrome. 

That radiologist report sent me in the direction of the mayo clinic in Minnesota, because I was told they treated SMA syndrome. Unfortunately that visit did not go as planned. They had me seeing specialists to try proving I didn't have any diseases I'd already been diagnosed with, and never properly assessed me at all for SMA syndrome. I did get them to do the one ultrasound test, which showed a pressure gradient of 5.4, which should've given me the gold standard nutcracker diagnosis. Only that radiologist didn't believe in nutcracker syndrome, so he said my results "weren't convincing" for it. This meant that my kidney Dr at home no longer believed it either, since he believed Mayo to be the best.

It took me moving from Idaho to Utah, getting better insurance, and finding a REAL nutcracker syndrome Dr for someone to take me serious. This took 2 years from my Mayo Clinic visit. I just cried when the nutcracker syndrome specialist told me there was a fix- an auto transplant, and that insurance HAD to cover it, due to medical necessity. So my surgery was on the books for Sept 4th.

A week before surgery the new nightmare began with our Dmba insurance.

Who knew I had an insurance plan which was using a grandfather clause loophole to deny treating my disease entirely. For the insurance premium of $560 a month, I sure didn't know. I thought we had premium, top of the line insurance. I didn't know the affordable care act had grandfather clause loopholes allowing insurance companies to continue denying coverage for chronic illnesses. Id never had an insurance lapse, so it wasn't even a pre existing condition. But as we prepared for our last appeal, the second level appeal, I found out why insurance companies suck. They told me to my face, over the phone, that they aren't required to cover my disease. I don't know when I've been more angry and upset with a company that was supposed to look out for my well-being. I learned that private insurance is a joke. I no longer believe in the private insurance sector. In my opinion they should ALL be regulated and forced to cover ALL diseases, no loopholes included. If they can't do the ethical moral thing themselves, they should be forced to. To be continued… the pain is too much to keep writing.