For too long I have been looking for relief from nausea. That was at least two years ago and it I'm sure now that it's been a significant player in my health for much longer. Being sick is just part of CF's definition, like infection, you might never know you have CF if not for chronic infections and maldigestion/malabsorption neonatal testing not withstanding. Being sick and feeling sick are not necessarily one and the same. Most of us just power through infection. I don't know many diseases where an "infection load" is part of our vital signs. Infection eats away at our bodies for the entirety of our lives.

When I was born in 1950, CF was a disease of the pancreas. It's similar in cell types to the lungs and because the pancreas is entangled with everything else in the gut, every non cancerous abdominal complaint is abundant in CF. My GI doctor recently broke with the Party line and made some disparaging observations about the quality of treatment and care of digestive health for adult CFers. For good reason IMHO.

Our sinuses, ears, nasal cavity and mouth, especially teeth are on the losing side of flesh eating infections. Hence dental issues, sinus reconstruction and aspiration caused by an ever present infectious glob of mucus sitting atop the epiglottis, destroying it and its perfect seal. That leaves the modern CF patient with a slowly deteriorating set of lungs, once lost, lost forever. Pulmonary health is both critical and urgent. And it's in no small way why so much attention is given to it at the expense of the rest of the patient, especially below the lungs.

Nausea is the pits. I have a pathway to manage pain, the opioid crisis not withstanding, and there's a plethora of treatments for nausea from milk and saltines to ginger, aromatherapy, OTC antiemetics, and of course pharmaceuticals. I've tried them all and have benefited from them all. Like pain that simply cannot be fully controlled, there's a limit to how much nausea can be eliminated.

I have had a pain in the lower right side of my abdomen, or the right fossa if you use the medical term. At first it wasn't focused, a meal would swell my belly with gas and everything felt like it was on fire. Losing weight below 125 pounds has been a line in the sand for me ever since I was 125 pounds when I was 20 years old. My father and I passed each other on the weigh scale in 1970, he was going to to die soon.
His post mortem showed several CF related health issues, but they weren't associated until my late diagnosis. That line in the sand is somewhat born in fear because it My nausea quotient, as I call it, has been off the charts and I weigh a paltry 114 pounds.

Wednesday, October 23rd, I had my appendix removed in an outpatient procedure. Yeah, another old Primary care doctor warned me that despite the tiny incisions, my body had been assaulted. That was a long time ago and it was my gallbladder. When I came to after the appendectomy, my first thought was, "I'm not going anywhere today". I was wretching and hurling bile, not ready for prime time. Then I remembered, the alternative was a night in the hospital. Fortunately the medications for pain and nausea kicked in and I went home.

Thursday I saw the surgeon who was delighted to say that her evaluation was wrong about the need for the surgery, warning me ahead of time that she saw no evidence of appendicitis. It was entangled with the layers of mesenteric membranes and nearly encased in scar tissue. The appendix had to be cut into two parts for the removal. A normal appendix has a small opening (lumen) that runs the length of the tiny vestige and it has been recently established as a kind of safe for probiotic organisms. My appendix was like 97% of us CFers, with the lumen obliterated by fibrous scarring, making it sealed from the rest of the intestines and worthless as a probiotic safe.

The surgeon who removed my gallbladder in 1997 made a point of saying there was evidence that gallbladder attacks had been going on for many years. He explained that each attack of a certain severity would split the mesentery and the uncovered gallbladder would adhere to the liver or such that built up layers of scar tissue. My post-op appointment was enlightening to say the least. When I asked if her difficulty in cutting the appendix loose from the mess of mesentery tissue was telling me that I have been dealing with appendicitis for a long time, she went into considerable detail about what she saw and what it all meant/means. Like the gallbladder, it showed years of chronic appendicitis and the terrible effect on my large and small intestines.

I'm happy to say that I am hungry, a sensation I have missed for years. The recovery is going well but I was told that it will take three months to heal and a year before my body adjusts to the surgical trauma.

What bugs me no end is the amount of time it takes to be diagnosed and the hit to my quality of life. I've never made any bones about my intention to leave this Earth on my terms. Before appendicitis and subsequent appendectomy I was just initiating talks with a specialist about ending my life. At 114 pounds and no desire to eat, I look like I'm on death's door and frankly was there mentally. Not depressed but so tired of swallowing extra saliva that happens just before vomiting, but usually batting it back. I'm guessing my GI doctor is wondering what the hell GI health specialists do to keep current, diagnose things like appendicitis when a patient has developed eating aversion. I will never understand why so many common CF issues aren't being caught at the first attack. I've had years pass by and for the most part gotten less than help.

If you are plagued by nausea and eating makes you sick, consider the appendix, you have a 97% chance of having appendicitis. Don't count on imagining, it will be negative and don't necessarily expect any great pain or palpable mass, the appendix is going to be a hard little finger that can make life not worth living.

Gyuck,

LL