July 2nd, 2000. I crawl out from my tent to greet the early morning, casting my eyes out over the side of the mountain and watching as the clouds drift by below me. I’m standing at 15,000 feet above sea level after 5 days of climbing Mt. Kilimanjaro, just 24 hours away from attempting to summit at 19,341 feet.
Fast forward to November 2005. I’m sitting around the table of a newly opened Thai restaurant when three bites into my food I have to excuse myself. Trying not to run, trying not to bend over as I make my way to the restroom, I’m praying I’ll find a women’s bathroom with a lock on it so I don’t have to embarrass myself by having someone see me lying on the bathroom floor in front of the toilet while the overwhelming pain, nausea, vomiting and need to empty my bowels consume me for the next hour or more.
In five years I went from the peak of health to someone who’d lost 20% of her body weight in three months. Eating was a delicate balancing act. Putting any kind of food in my mouth was like a game of Russian roulette, never knowing if the next bite was the one to cause everything to spiral out of control. I couldn’t eat without setting off a chain reaction of symptoms including the most intense, intractable pain I’d ever experienced. Climbing Mt. Kilimanjaro was a walk in the park compared to the mountain I now found myself scaling.
It wasn’t until the summer of 2007 that I finally received the diagnosis of chronic pancreatitis due to a genetic defect and a gene mutation. It was the beginning of more questions than answers. Learning I had a progressive, debilitating disease that didn’t have a gold standard of treatment, let alone a cure, was devastating.
I spent the next four years going through various endoscopic procedures, a sphincterotomy, several stent placements in my pancreatic duct, open abdominal surgeries, including to exclude cancer, and a bilateral dissection of the nerves around my pancreas in an effort to diminish the pain.
I was taking pancreatic enzymes to help me digest food, higher and higher doses of narcotics to try to dull the unrelenting pain, and eventually was being fed through a PICC line in my arm. Drip. Drip. Drip. Twelve hours at a time.
My life no longer felt like my own. I could no longer hike; no longer travel; no longer work a 50-hour a week job; no longer play with my grandkids. I felt such grief and shame for not being able to pull my own weight; for needing others to do for me what I used to do for myself; for wanting to give up.
In 2011 I made the decision to have a total pancreatectomy with auto-islet cell transplantation to remove my pancreas, spleen, gallbladder, duodenum, part of my stomach and to restructure my GI tract. It meant a 10 to 12-hour surgery, weeks in the hospital and a full year of recovery. It meant the very real likelihood I’d become diabetic – trading one disease for another – but it also meant a chance at a better quality of life and a lessening of the pain that was slowly consuming me.
It’s been 10 years since my transplant surgery and I’m living what I refer to as my “new normal” – a life somewhere between the once healthy, active me, and the woman who had physically, emotionally and psychologically hit rock bottom.
I still have major digestive issues and difficulty absorbing nutrients even with the pancreatic enzymes I must take whenever I eat. I’m an insulin dependent diabetic and my transplanted islet cells work just enough to keep me from being a brittle diabetic, although it’s a constant balancing act to keep my blood sugar in check.
I developed gastroparesis following the TP/IAT, so nausea and vomiting are a routine part of my day. It’s like going through life with stomach flu that never goes away, despite having a gastric stimulator implanted in my abdomen last December to lessen my symptoms. The next step in this journey may be a permanent feeding tube so I can bypass eating all together.
My new normal means only being able to work part time because managing my health is a full time job. It means ordering my groceries online and having them delivered since many days I’m not able to leave the house. It means taking a walk around the block instead of going on a half-day hike. It means foregoing traveling (a passion of mine) because trying to manage so many variables and possible health crises makes me extremely anxious, especially if I’m traveling alone.
My new normal means often having to cancel plans at the last minute because even though I may truly want to participate, my symptoms won’t let me. It means working from bed on those days when I’m too sick to be up. It means parsing my household chores over several days so that I don’t overdue it physically and need days just to recover. It means taking my shower at night because, while for most people a shower invigorates and enlivens, for me, a shower is followed by the need to rest. It means fatigue at a cellular level. I wake up exhausted. I go through my day exhausted. I return to bed exhausted.
My new normal means being okay with being single and living alone because my chronic illnesses interfere with having an intimate relationship. The truth is, 75% of couples break up when one person in the relationship is continually sick or in pain. That’s certainly the case with me. My marriage ended less than a year after my transplant surgery, and a long-term relationship I was in recently ended because the stress and uncertainty my illnesses created was too difficult for him.
I have an arsenal of things I rely on to help me manage my health and well-being: yoga, meditation, biofeedback, massage, counseling. Despite how much these things help me, I often have to forego some or all of them because my health insurance doesn’t cover the cost, and I can’t afford it on top of the $1000 per month co-pay I spend on insulin and pancreatic enzymes – two drugs I need to survive.
Those of us who have had the total pancreatectomy with islet cell transplant need multi-disciplinary care in the months and years that follow. If we don’t live in or near a city that has a National Pancreas Foundation Center, most of us are seeing numerous physicians who are often located in different cities (or even different states), and who are focused on their particular specialty and not on the patient as a whole. The lack of communication and siloed way in which they work makes advocating on our own behalf critical.
For patients like me with pancreas disease, pain control is a priority. Recent changes in how and when opioids are prescribed have added to the burden we’re already carrying. Within a year of my transplant surgery I was off all narcotics, but that was a decision I made in concert with my doctor who properly weaned me off of them over the course of several months so I wouldn’t experience unnecessary withdrawal symptoms. Now, patients are cut off without any such tapering or effective alternate treatment, leaving them to suffer needlessly and without hope.
In my case, the degree of pain I experienced before the TP/IAT was excruciating, and opioids were the only thing that offered me some respite. While my pain is no longer to that degree, it does interfere with my life and my ability to be functional and productive. Options for me are quite limited, since opioids have been demonized, cannabis is illegal in the state where I live, and there aren’t other medications that are effective in controlling my pain.
You Don't Look Sick Blog 