A goal I worked towards for almost 10 years has finally come to be! 

 

       Since 2017, I knew something had changed over the years of having Type 1 Diabetes. My diabetes had become more and more difficult to manage. When I first wore a Dexcom, I found out that I was dropping into the 40s in the middle of the night and I didn't know or feel it. My PCP and endo both warned me that one night, I may not wake up. I had to do something, so I changed insulins, doses, what I ate, when I ate...nothing worked for long. I even got gastric sleeve surgery in an effort to lose weight and maybe qualify for a clinical trial since none ever allowed for a BMI over 30. I followed the program faithfully and was able to lose over 120 lbs and keep within 10 lbs of that ever since. It was my Fitness Renaissance and a great time in my life, discovering what I was capable of. Still, the lows came.

​

       In 2023, I tried an insulin pump again, even though I had done so twice before but couldn't get past the tubing and mental strain of having a friend die at 28 years old, overnight, with her pump still pumping away. I chose a tubeless pump this time that linked to my Dexcom in an effort to get past this mental block.

The Omnipod sure helped with running and I was able to complete the 2023 Chicago Marathon almost without a low! I did cross the finish line with a BG of 45, but held strong for the previous 26 miles! That was an amazing feeling! Still, the sudden lows and hypoglycemic unawareness continued to be more frequent. 

 

        In 2024, after almost 4 years of testing, retesting, pauses, reevaluation, and a global pandemic, I was accepted into the Vertex 880 trial where they were testing islet cells made from stem cells and not obtained from deceased donors. I was so excited and also cautiously hopeful that THIS could be the thing that helped me avoid those sudden, unexplainable lows, if only temporarily. I came within 4 days of finally getting my infusion when my doctor called to say Vertex pulled me due to a pre-approved condition now being an exclusion. 

​

         I was absolutely devastated. To be so close and now back at the beginning was a hard hit to take. My brain refused to accept that this was it and I just had to hope I woke up every morning. I fell into a depression, a hopelessness I hadn't felt before. I refused to give up. I contacted other trials, but the same thing that ousted me from Vertex, disqualified me from those studies too. Until one fateful email.

​

          Enter the islet transplantation team at University of Chicago with Dr. Piotr Witkowski. Although I didn't qualify for any study sponsored by a drug company, I did qualify for his personal study. I came to Chicago for evaluation in July 2025. That was an emotional adventure of highs and tremendous lows. Excited to qualify, but so scared to be burned a second time. Hopeful, but afraid to fall for false hope again. I almost quit so many times and I must give thanks to those that talked me off the metaphorical ledge a few times. You three know who you are and I am forever thankful. 

​

          Then came the waiting. After obtaining all necessary qualifications for the trial, I was listed for transplant in September and shortly after got 'the call!' I flew to Chicago on the next flight I could get and received islets from Missouri and Florida, who I lovingly called MoFlo. I had some complications but the cells took root and hope began to grow. However, it was not to be. Although my a1c dropped from the 7s to the low 6s, there it stayed and then slowly started to climb. MoFlo was unfortunately not robust enough on their own and I would need another as a 'top off' as they put it. I felt guilty. Was I taking cells from someone else? Was I just not meant to have this? It was another blow to an already fragile state. Still, I knew it was true.

​

           Cut to January 2026 when I received a very shocking and unexpected call from Dr. Witkowski that a patient unfortunately could not use the cells they were supposed to get due to illness, and I was the only other match he had. It was get to Chicago immediately or the cells would be wasted. That was clearly no choice at all. Off I went to Chicago on the 5:50am flight to get my transplant that I truly hoped would be the one to put me into insulin independence. 

​

            On April 8th, it was official! I passed my 75 day check up with flying colors and I was insulin independent for as long as those precious islets will last! I have always known this is NOT a cure. Not at all. It is, at best, a pause. Hopefully a long pause! I know that someday, MoFlorigan (the last transplant was from Michigan) will either stop working, or my vicious immune system will kill them, and I will have to back on insulin. I am a Type 1 Diabetic and always will be....but on pause for now. I have to take strong immunosuppresive drugs with rough side effects that we will slowly be weaning down, but I will have to take them for as long as the cells survive, which I hope to be a long time. 

​

            My most recent A1c was 5.2! I have never seen a number like that in my life! It's the equivalent of having an average BG of 103. 103! Absolutely amazing. 

​

             Some of the things I have done since becoming 'normal' (-ish): Taken a shower with no machines attached to me, gone through the body scanners at the airport (can't do that with an Omnipod), gone for a run with no preplanning and no low snacks (and not needing them), not packed my pump supplies, dexcom, insulin, and everything else diabetes to go to Chicago this past week, not worn my dexcom since Tuesday (and boy does that feel weird), and most importantly NOT HAD ANY SUDDEN LOWS....AT ALL! 

​

             The fear i had every night is slowly ebbing away. I've had Type 1 Diabetes since 1990, so it will take some time to break habits that I have been forced to have since George HW Bush was in office. Still, I will enjoy every day I have with MoFlorigan happily living in my liver no matter how long that is.

It may not be a cure and it may not be all sunshine and roses, but a dream I've worked so hard for since 2017 finally arrived and I will be thankful for every second. I'm only sad that my dad passed before he could see me insulin-free, but I'm sure wherever he is now, he knows. 

​

              Thank you, in no particular order to: Laurencia, who has been the best support, nurse, advocate, and friend I could have asked for, consistently going above and beyond during this crazy adventure. Lee, the love of my life, for supporting me through all the highs and lows and every breakdown I had through this endeavor. Hannah for being a shoulder to cry on, an understanding friend, and a big reason I didn't give up this last time. Nick, for keeping me calm every time in pre-op with conversation and his natural chill nature. Finally to Dr. Witkowski, who even though we didn't always see eye to eye, never stopped fighting for me and I truly believe has my best interests at heart. You are all stuck with me! 

​

Please enjoy my graduation pictures in front of 'the sign', a right of passage for any of his patients that achieve insulin independence.