As you probably know, I have suffered with pancreatitis for a decade (longer, really, but that's when it was first diagnosed). In 2020, it really went haywire, causing me to develop chronic pancreatitis (which means my pancreas is permanently damaged and I have pain much more regularly in addition to the acute bouts that land me in the hospital). My pancreatic ducts are too small (a congenital thing) and I've had stents inserted in them multiple times, as recently as last October. That used to buy me 2-3 years without pancreatitis -- this time, the pancreatitis was back within a few months.
The upside of this is that Kaiser, my medical insurance provider, is now FINALLY on board with referring me to UCSF for a life-saving surgery. TP-IAT (Total Pancreatectomy with Islet Auto Transplantation) is a very specialized surgery, only done at a few centers in the world (UCSF being the only one west of the Mississippi -- and one of the very best in the world). My specialists at Kaiser never even told me there was such a thing -- I found it through my own research. I advocated for this opportunity for about two years before I got the go-ahead, when Kaiser acknowledged that there was nothing more they could do for me.
It has been a whirlwind navigating between the two systems and working our way through UCSF's evaluation process (consultations with numerous members of the surgical and transplant teams, tons of lab work and scans, immunizations, and other tests). We made it to the finish line -- UCSF has agreed to do the surgery... they see that this is the right time, in terms of the progression of my disease, which will very likely result in great outcomes.
So, what is TP-IAT? It's a 10-hour surgery that involves taking out my pancreas (hallelujah!), gall bladder, and spleen, and totally rewiring/replumbing the whole system. The problem with not having a pancreas is that it produces pancreatic enzymes and insulin. The enzymes are not a problem -- you can take those in pill form (which I will with every meal for the rest of my life). The insulin is a bigger issue -- without it, you're an insulin-dependent diabetic. Here's where the surgery turns to WEIRD SCIENCE.... while I'm on the table undergoing the very complex, 10-hour surgery, my demonic pancreas (Damien, to those who know and curse him), is taken over to the world-renown islet transplantation team. They spend about an hour extracting islets from the pancreas (those are the bunches of cells that produce insulin) and then they infuse them back into my body through the portal vein into the liver to (get this!) essentially turn the liver into a pancreas! Over the course of many weeks or months, the idea is that the liver takes over producing insulin. UCSF is crazy-successful with this -- upwards of 60% of their patients end up free of having to take insulin within a few months. The UCSF team is very confident that I will fall into that category (I'm in great health otherwise, don't drink or smoke, am not opiate-dependent, and so on). Even if it doesn't completely work, it'll help and, even if I have to take some insulin for the rest of my life, it'll be a small price to pay for the freedom from pancreatitis.
Miraculously, an opportunity has presented itself for me to have this surgery at UCSF on Thursday, July 28th, 2022... we are beyond grateful that the stars (and a lot of bulldoggery on the part of a lot of people) have aligned to make this a reality. Otherwise, it would've been several months out and, again, this thing is an absolute ticking time bomb. In addition to pancreatitis being one of the most painful experiences a person can have, any bout can be fatal. Additionally, the longer this goes on, the more damaged the pancreas becomes, making this surgery less likely to be successful. And then there's pancreatic cancer -- the UCSF surgeon told us that it's only a matter of time before the cells within my pancreas will turn to the "dark side"... it's just what cells do when they're activated and stirring about with inflammation all the time. No thank you, Damien!
I'll be in ICU for 1-4ish days and in the hospital for a total of about two weeks. This is mostly because they need to monitor the insulin part super closely. The surgery itself is also major, so there will be pain to manage. If you want to know what the surgery entails, you can watch this 5-minute animated video:
https://youtu.be/yJMmbZuVAJ0. I'll have a feeding tube for a few weeks (directly into my belly, thank God... I had the nasal kind for two weeks in 2020 and it was the worst experience of my life). Cody and I have already received a fair amount of diabetes education, but we'll get training in the hospital, too. I will need to be supervised 24/7 for about a month after leaving the hospital, just in case the blood sugar goes wonky. Cody will stay with me for the most part, but I may need the occasional babysitter, so some of you local friends and family members might get called upon to hang out with me at some point! The endocrinologist will follow me closely for a long time, as my liver should start producing insulin and we'll have to adjust what we're contributing from the outside. Complications can occur, of course, but UCSF has never killed anyone by performing this surgery, so that's good! Recovery can be wide-ranging, depending on a bunch of factors. Many people in my situation are taking opiates daily for the chronic pain, which becomes a major issue after the surgery in terms of weening/phantom pain, etc. Those folks are less likely to have good outcomes, unfortunately, and I am lucky that my disease has not progressed to that point. Thus, the importance of doing it NOW!
We will use this site to give updates about the surgery and recovery for those who are interested in such things. If you know me very well, you know you can probably also expect some cute selfies from the hospital in gorgeous hospital gown attire. Often people want to know what you need or what they can do to help and we are certainly lucky to have so many caring people in our lives. We won't need food or much else really... maybe the occasional babysitter once I'm home if Cody needs to go somewhere. I always love a fun text from my peeps, of course! Netflix recommendations are appreciated, certainly! Mostly, just send us positive vibes and, if you're one of Cody's peeps, make sure he's doing okay. He's an incredible partner and caregiver and I could not do this without him, that's for sure. This surgery happens to fall on the first anniversary of his mother's death, so it's going to be a challenging day on multiple fronts for him.
Thank you all for your love and support! This sounds scary to most people, and it certainly is a major, unique surgery. We are not naïve to the obstacles we'll surely face during recovery, but are beyond grateful and blessed to have this opportunity. It is going to dramatically improve the quality of our lives and, at risk of sounding dramatic, will almost certainly actually SAVE my life. Many of the people I love most have suffered as a result of my disease... just watching me get pancreatitis is a scary, upsetting experience. It's overwhelming to know that this will NEVER HAPPEN AGAIN. If you're the praying kind, you can send your prayers to the hands and minds of the UCSF team, led by Dr. Andrew Posselt (surgeon) and Dr. Umesh Masharani (endocrinologist). They are absolute gangsters in their field and, somehow, warm, caring, lovely people at the same time. We could not be in better hands, literally or figuratively. Here's some info about UCSF's TP-IAT program and team:
https://www.ucsfhealth.org/clinics/total-pancreatectomy-islet-auto-transplant-tp-iat-clinicMore to come when the big day arrives and thereafter -- stay tuned! Maybe you'll even get to see gory photos of my cool incision! It'd be great if they'd give me my dead pancreas to use for target practice or something, but that's probably not in the cards. We'll all just have to spit on his grave in a figurative sense. Rest in Hell, Damien!
Love you all! Eagerly awaiting a bright future ahead full of time with family and friends, TRAVEL, chasing my beautiful grandchildren. and adventures of all kinds that Damien has prevented me from even imagining!
XOXOXO,
Amy
