Pancreas Transplant Journey: Pt. 1

Hi, I’m Carolina. I’m writing a series of articles following my pancreas transplant journey to not only help myself express some of the intense feelings that come along with transplantation, but to try to help educate others as well. 

I was diagnosed with type one diabetes when I was seven years old — I’m nineteen now. Type one diabetes is a condition caused by an autoimmune attack on the beta cells that produce insulin in the pancreas. The body no longer has a way to regulate blood sugar, so you step in and become your own pancreas, doctor, nurse— you name it. There is no known cause or cure for this condition— it is chronic, lifelong, and as much as no one wants to admit it— usually ends up causing the death of anyone diagnosed with type one. 

I’ve watched friends die from type one. I’ve watched myself die and get brought back due to type one. 

My blood sugar was always somewhat volatile since I was diagnosed. I was able to handle it during the first few years with the help of my parents, but I dealt with a lot of low blood sugars that ended with me almost dying and highs that ended with me almost dying. My body deteriorated over the years— as did my mental health. I slowly got to the point where my body just wouldn’t allow me to do certain things that most normal people can do (run, walk, hike, etc). Not everyone deteriorates like this with type one, but I’m a brittle diabetic and that’s just how my body decided to be. I struggled with substance abuse during my teenage years as a means to ignore my chronic illness. I still struggle with a panic disorder and major depressive disorder due to my illness. I had no problems with mental illness until my health started taking a nosedive. 

I had a series of seizures when I was fifteen years old that lead to me running my blood sugar higher than it should be and caused extreme anxiety for me. I still live with this anxiety on a daily basis and am in treatment for my mental health. I have been for years and it seems as though it can’t be fixed as my body is volatile and my fears are valid. I’m sure I’ll go over some of these things a little more in my future articles. 

Last year, in March 2018, I became extremely ill with diabetic ketoacidosis (DKA). If not appropriately treated, diabetic ketoacidosis is fatal. I experienced malpractice while I was at the first hospital before I was transported across Alabama to UAB Children’s Hospital. While in DKA, the body requires both insulin and sugar or the brain will hemorrhage due to rebound edema. DKA causes the brain to swell, so messing with the blood sugar level and not bringing it down slowly causes the brain swelling to become so severe that it typically leads to a vegetative state. This happened to me — a doctor only gave me insulin instead of insulin and sugar — and I’m lucky I lived through it. When the EMTs got to me to transport me, I was later told that I had fifteen minutes left at maximum. The doctor in the first hospital that almost killed me said to me that I was going to die, and I did. The doctors at UAB Children’s lost me for about two minutes after putting a PICC line into my body. I don’t know how my body pulled through and came back, but it did, and I’m thankful for every morning that I get to see the sunrise— even if feels like just another day of dealing with health issues. The doctors didn’t think I would have the same cognitive function that I had before this episode of DKA due to the malpractice, but I’m okay. I have some slight memory issues, and that’s it. My body never recovered from that episode of DKA though. I live in a constant state of something called diabetic hyperglycemic hypersmolar syndrome (long name — I know). I can’t fully bring my body out of metabolic acidosis without having a low bloodsugar or going into full blown DKA. I’ve lived in limbo for over a year now, and I’ve gotten to the point where I can barely leave my house. I rarely even have the energy to take the trash out. My boyfriend has had to do a lot for me, and I couldn’t thank him enough. I almost had to drop out of college, and my attendance is horrible because of how sick I am all the time. My kidneys and liver don’t work correctly anymore either— but I don’t require dialysis or any extra treatment at the moment since the damage is moderate. I’ve been extremely depressed for well over a year now— but I finally see the light at the end of the tunnel. 

In February 2019 I realized that I could get a pancreas transplant and live without type one for however long the transplanted organ worked inside of my body. I began the transplant intake process immediately through Mayo Clinic in Jacksonville, FL, about four hours away from my home in Charleston, SC. 

My first trip to Jacksonville was nerve wracking. I ended up booking a place that was too small for four people and three animals. I was in a complete panic the first night until we found another place to stay about 30 minutes away from Mayo Clinic. We spent a day just relaxing before my intake appointments because my anxiety was at an all time high. I thought I would be denied the transplant or have some pushback from the doctors — but the opposite happened.

My first appointment for the evaluation was at 7:30 in the morning. We met with the director of the pancreas transplant department and I was surprised that he wanted me to get a pancreas immediately. I’ve spoken to a few other people who have had the transplant, and since pancreas transplants are somewhat uncommon and hard to do, not many people want them, and not many doctors want to do them. My surgical doctor believes that more type ones should have the surgery to prevent complications from ever happening, and I would be one of the youngest at Mayo Clinic to ever have a pancreas-only transplant. I would be considered high priority due to how volatile my blood sugars are. I was informed that I would be the only person on the waiting list at the time. I went ahead and did as many physical tests as my body could handle with breaks in between because of how brittle my physical body is. I have to go back in May to complete the rest of my tests and the doctor has informed me that my spot on the list is guaranteed. 

We met with a nurse coordinator and social worker (and I had to leave mid appointment because my blood sugar started dropping like crazy— go me!). I had an EKG, echocardiogram, pharmacist exam, psych evaluation, carotid artery ultrasound, chest X-ray, and 20 tubes of blood drawn. Funny story— I actually started crying a little bit when the phlebotomist told me that it was “almost over”. I was so woozy that I thought she meant my years of hell were almost over and we had a moment. I’m hoping to see her again when I get the rest of my blood drawn for my next round of antibody tests. 

I still have to go back to finish my social work appointment, meet with the surgical team, get an abdominal ultrasound, meet with infectious diseases, meet with a pharmacist, nurse, and nutritionist (all just classes for information), and my wrap appointment with the director of pancreas transplantation. I can’t even describe the amount of energy that testing took out of me because of my anxiety and how brittle my body is, but I hope that my body can hold out and finish the rest of these tests and appointments so I can finally become active on the pancreas transplant list. 

Everyone around me is so excited and ready for the future. They’ve watched me suffer and deteriorate— and I’m ready to no longer feel like a burden to them anymore. Anti-rejection medication will be hard. I’ll have to make a lot of changes in my life to make sure that I stay away from crowds, sick people, germs, sunlight, and many other things. I’ll suffer from weight loss, hand tremors, nausea, among other things. I may deal with serious illnesses like CMV due to my transplant which can cause the organ to reject and fail— but hey, if that happens, at least I tried. I’ll no longer have an immune system, but it’s better than the alternative and state that I live in currently. 

I hope my donor knows that I’ll live my best life with their precious gift. I’ll travel to every place I haven’t been able to see. I’ll go on hikes, swims, runs— everything. I’ll finally have a moment to breathe, sleep a full night (which I haven’t done in 13 years), come off of my antidepressants and anxiety medication, feel comfortable with driving, eat whatever I’d like, drink whatever I’d like— the list is pretty much endless. I’ve never known a life without chronic illness and a delicate balance between life and death. 

Please consider donating life if you haven’t already. Signing up to be an organ donor is simple and gives people like me the chance to live when they’ve never been able to. 

https://www.donatelife.net/register/