This is the second article in a series that I’ll be continuing post-op.
You can find part 1 here: https://www.hercampus.com/school/c-of-c/pancreas-transplant-journey-pt-1
I just returned to Charleston from my second round of transplant evaluation testing at the Mayo Clinic in Jacksonville, FL. This round was much easier on me mentally since I had all of my finals turned in and didn’t really have anything school-related to worry about.
In total, I had to: meet with a nephrologist, meet with a nurse coordinator, meet with a social worker, meet with an infectious disease nurse practitioner, meet with a transplant surgeon, go to three educational classes (nutrition, pharmacy, and I don’t exactly remember the other), get cleared in a psychiatric evaluation, have a good bit of blood taken, do a carotid artery ultrasound, abdominal ultrasound, dobutamine stress test, chest X-rays, echocardiogram, get a buttload of vaccines, and get a CT scan of my abdomen/pelvis.
The stress test was my least favorite— probably just because my IV blew twice during the test. Otherwise it wasn’t too bad.
So, that’s a lot of testing— but I’m glad they were that extensive. I was treated with a lot of respect, kindness, and patience through each test and meeting. Coming from someone who was born at the third worst hospital in the U.S. (yay central California!) and has only received medical care from smaller hospitals in the southeastern U.S., I was pretty amazed at the entire process. The amount of information I got was overwhelming, but I feel like I was somewhat prepared because I’ve spoken with quite a few people who have had pancreas-only transplants. It was also pretty sweet because I was able to split the testing into two trips— so I had time to gear up for another round of tests/meetings when I got back to Charleston after my first visit.
Everything from the tests came back clear enough for me to be listed, so as I’m writing this (May 4th), I should be listed for transplant on May 7th (Tuesday). I’m not exactly sure when I’ll get my call or when to expect it, but I’m trying to get everything in my house decluttered beforehand with the energy that I do have. I’m working on my oh-no-it’s-time-to-go-to-the-hospital bag and I’m leaving a list of extra stuff I’d like when I’m discharged for my boyfriend and stepdad to bring to Jacksonville— which includes, but is not limited to: my entire xbox system, ALL of my skincare products, outfits that aren’t baggy shirts and sweatpants, books, and some other petty stuff. They get to go on a treasure hunt. Mwhahaha.
I’m still somewhat overwhelmed emotionally— but knowing that the end is in sight had lead to my anxiety taking a backseat. I know that there is an end to this brittle hellhole I’ve lived in for years, and I know that I’ll be able to go out and live and do all of the things I’ve been unable to do for so long.
I wanted to take some time in this part of the article series to raise awareness for my friends that have passed away due to type one. Many people don’t realize how serious type one diabetes is and that we didn’t bring this on ourselves. As I said in my previous article, type one diabetes is an autoimmune disorder that leads to the immune system attacking and killing off the insulin-producing beta cells in the pancreas. Our pancreases still produce enzymes for digestion— only the beta cells are killed off. Some people are type one due to conditions like chronic pancreatitis or pancreatic cancer, so they have to get a pancreatectomy (partial or complete removal of the pancreas).
A very close friend of mine, Eric Weigler, passed away due to major organ failure induced by type one in October 2017. He was an engineer for NASA, absolute genius, and one of the kindest people I’ve ever known. Eric loved animals, science, and space. He was clearly out of this world and loved to experiment with his type one— which ultimately lead to his death. Eric left behind his animals, family, wife, and his true love— a lunar rover project he was working on at NASA. Eric couldn’t be an astronaut due to his condition, so he went with the next best thing. I can confidently say that I’ve never met anyone as intelligent as Eric and miss him very much. I hope there’s a big spaceship in the sky made just for him.
I’ve lost many other distant friends due to type one because of my involvement in the type one community. Many were underage at the time of their deaths, so I’ll leave their names out. They passed away from dead in bed syndrome— a fatal condition caused by the bloodsugar dropping too low in a person’s sleep that leads to their death. If they don’t die from it, they usually end up with a cerebral edema that causes brain hemorrhaging, rendering them brain dead or in a vegetative state.
Many others pass away from misdiagnosis of type one and meet the same fate of being brain dead or vegetative. A simple bloodsugar or urine test can reveal a diagnosis of type one— and at this point, considering all of the children and adults who have died due to misdiagnosis, I believe it should be protocol when anyone comes in presenting with persistent flu-like symptoms. If you’re interesting in the testonedrop program, please look into Kisses for Kycie to learn more about misdiagnosis and its effects on an individual.
I may have mentioned this in the previous article, but I had to give up my major in microbiology due to my health deteriorating so quickly and profoundly. I have a passion for science, healthcare, and research. During my first year at the College of Charleston I did some research on high metabolism in aquatic mammals and how this affects things like protecting their kidneys or cardiovascular system since they run extremely high blood sugars. I was lucky enough to have my research published in the journal of undergraduate biological research. My results weren’t exactly conclusive, but other similar studies have been conducted and show that genes expressing high metabolism protect aquatic mammals from diabetic complications— and I hope researchers go on to prove this in humans. I wanted to do so much more research regarding type one, but I’m now in the social sciences (sociology) and hope to do research on mental health and its relation to chronic illness— especially type one diabetes.
Following this transplant I’ll never be able to work in healthcare, but I’ll still study on my own time and try to keep myself updated on any advancements regarding type one and other endocrine disorders. I will continue raising awareness for type one and the mental, physical, and socioeconomic effects— because this disorder affects every aspect of a person’s life (don’t get me started on big pharma, capitalist healthcare, & monopolization of diabetic supplies leading to people’s deaths— I just got lucky with my insurance).
Regardless of not being a type one in the future, type one has been all I’ve known. I’ll just have more energy to raise awareness, research, and offer a helping hand to other t1s.
I suspect that the third part of this article will be regarding my feelings on waiting for a new pancreas, but I’ll keep everyone updated within the next month.