Melanie’s Story

Site created on October 27, 2022

Melanie was first diagnosed with Acute Pancreatitis in July of 2015 when she was brought into the Emergency Room with severe abdominal pain, vomiting, and abdominal swelling. After the first episode, Melanie has since had 20 Acute Pancreatitis episodes - all requiring emergency care and most requiring hospitalization. While at the beginning of living with Acute Recurrent Pancreatitis Melanie was able to live a pretty "normal life" between attacks, the past 1-2 years have changed  and brought on Chronic Pancreatitis with continued everyday pain between attacks.

The pancreatitis episodes have been somewhat of a mystery to the dozens medical staff participating in Melanie's care. She has seen specialists at Vanderbilt, UAB, Yale, and University of Chicago - all of whom have done extensive research on patients like her and have found that she is a carrier for 5 different genetic mutations (like Cystic Fibrosis) that are all linked to acute and chronic pancreatitis. Melanie was also found to have Pancreatic Divisium - the failure of the two parts of the pancreas joining as one while she was a baby, resulting in less effective "flow" of digestive fluids through her pancreas. The combination of these two findings (and failure of other surgical interventions, holistic supplements, diet and lifestyle alterations, and any other possible “fix” under the sun) have resulted in a disease that is "untreatable", unless the pancreas is surgically removed altogether.

Given the recent decline in her day-to-day health, Melanie will be undergoing a TP-IAT surgery at the University of Chicago in February, 2023. This surgery involves the total removal of the pancreas, duodenum (part of the small intestine), and lower part of the stomach. A "reconstruction" of the digestive tract also takes place, and the transplant of islet cells that produce insulin from the pancreas, and into the liver.
Once the surgery is complete, there is a long road to recovery- which is typically 2-3 months off of work and at least 1 year until patients start to feel more stable- overall adjusting to a "new normal". While this surgery eliminates pancreatitis, there is a 70% chance Melanie will be a Type 3c diabetic and require constant glucose monitoring and insulin administration. By having the pancreas removed, there will also be no source of digestive enzymes (that the pancreas secretes) and she will have to take digestive supplements 5 times per day. While this surgery does have a multitude of complications including Diabetes, malnutrition, malabsorption of nutrients and vitamins, digestive disorders, adhesions, etc. This will provide a life free of pancreatitis, daily pain and narcotic usage, and increased risk of pancreatic cancer.

We will be using this CaringBridge site to keep everyone informed and to help not overwhelm those involved in Mel's care.
While we do not yet know costs that we will be incurring or different things we need to help with our journey through the TPIAT procedure, we will make sure to post here if/when we do have needs. For now, your continued support through well wishes and prayers are so appreciated.


To learn more about the TPIAT procedure, please visit: https://care.cincinnatichildrens.org/pancreas/tpiat?gclid=CjwKCAjw2OiaBhBSEiwAh2ZSP15pS4gCejZaHxPIApoNGkA1wFTegbuFqtsZKwOpw66AbJWSv8OmcBoC0TUQAvD_BwE

Newest Update

Journal entry by Melanie Hallowell

I have been feeling pretty great overall physically! My diabetes and digestion have been well controlled, and I haven't had any big changes since my last update. I have more energy, I’m able to be as active as I want, and I have been getting to do almost everything I want without my body holding me back! But there is one caveat to that statement that I have been wrestling with for the past 2 months and I don’t quite know how to share…

 

If you have been following along with earlier posts in my journey, you know that Justin and I completed the first parts of IVF before my surgery and have embryos frozen (which we were planning to use post-op). In August I had an appointment with Maternal Fetal Medicine for pre-conception counseling due to some issues found on my post-op CT scan from May (mentioned in my previous post). To keep things frank, my pancreas had been causing damage to one of the main veins in my abdomen over the last 8 years and now the vein is severely narrowed. This narrowing causes increased pressure in the connecting veins, which resulted in the formation of varices in my esophagus and stomach (bulging veins). There is no “fix” for the issue, and it will hopefully not cause any problems in the near future, however, this makes pregnancy extremely unsafe for me to pursue... Long story short, we were advised that we should use a surrogate for us to have “our own kids”.

It has been a tough few months and it has taken us a while to fully process how we want to move forward with having a family. While we appreciate all our family and friends encouraging us through availability of other “options”, this has been a big struggle for me personally to have another normal experience taken away... Our options involve a lot of hoops to jump through as well as extreme expenses, so we were very hesitant to make any decisions. Since we already invested in and completed the IVF process before my surgery, we are hoping to be able to use our embryos through the surrogacy route. We are slowly beginning to look for a surrogate who would be willing to carry one of our embryos, otherwise known as a “gestational carrier”. This is a new and somewhat tough situation for us, so we are hoping to find someone who feels called to surrogacy through our network of friends and/or family, promoting a more comfortable and enjoyable process for everyone (in lieu of going through an agency). 

The past year + has squashed all the plans that we thought we had, so we are trying our best to thrive living in the space of “no plans” while enjoying as many good things as we can! And once again, we are so grateful for everyone who has helped support us through another bump in the road. We are unsure what the next year+ will look like, so we appreciate all of the prayers and positive vibes as we navigate through it.

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