This guest essay was written by Anne Hambrick-Stowe Rankin. Anne writes about her experience before and after receiving a pancreas transplant.
The pancreas transplant is arguably the closest thing the medical world has to a true cure for type 1 diabetes. And yet, they are only very rarely performed. Pancreas transplant surgery is expensive and potentially dangerous, and recipients need to take anti-rejection pills for the rest of their lives, and still face a risk that the pancreas will be rejected or that they’ll continue to require insulin. And on top of it all, pancreas donors are exceedingly rare. Healthy pancreases must be harvested from deceased organ donors (“beating heart cadavers”).
As a result of all this, pancreas transplants are usually (but not always) limited to patients with extreme management issues that are already receiving a kidney transplant.
So far, Anne is one of the lucky ones: despite some complications, she has enjoyed effortless, automatic blood sugar control after receiving her pancreas transplant. She no longer has diabetes. Here is her story.
A Sweet Life . . . Now Without Type 1 Diabetes
I was four years old when I was diagnosed with type 1 diabetes. That was 41 years ago. Wondering what it would be like to not be diabetic was a far-fetched daydream. After all, growing up, I had no recollection of life pre-diabetes. It was the only way of life that I knew. Although diabetes made me different from other kids, I never felt odd.
Despite my positive outlook, the challenges of diabetes are significant. And no one knows them like another T1Der. One of my friends says, “The juggle [and struggle] is real.” It’s a relentless no-breaks-allowed job, a 24/7 responsibility. If you take a break, it usually comes at a cost.
The first serious cost for me was retinopathy. Fortunately, after successful surgeries, my eyesight is perfect with no signs of continued damage. The other cost for me was kidney disease. After a decade of decline and 37 years with diabetes, I needed a transplant. My brother Chuck ended up being my perfect match as a donor. A simultaneous kidney-pancreas transplant was not an option since I had a living donor. That was perfectly fine, I was just as relieved and thankful to have another “lease on life” without having to adopt a regimen of dialysis while waiting for a match.
Four Years Later
At my yearly transplant follow-up, my nephrologist asked if I would consider a pancreas-after-kidney transplant since my kidney was completely healed and healthy. My life already renewed, I had not given this possibility a thought. I quickly refocused my attention.
Of course! Why wouldn’t I at least entertain a conversation about it?! I knew I could live well with diabetes, and it wasn’t a life-or-death situation like with the kidney, but I also knew the physical and psychological benefits to a pancreas transplant. Following the complex process of evaluations, testing, and interviews, I was deemed an ideal candidate. Could my far-fetched daydream suddenly become more realistic?
I didn’t have to wait long to get “the call.” Based on surface lab testing it seemed the donor’s pancreas would be a perfect fit. I reported to the hospital as final testing of the organ was undertaken. Soon I would either be taken into the Operating Room or be told the organ could not be used. Unfortunately, the doctors determined that its prospects for transplantation into a “foreign body” were poor. I was sent home.
Even though I prayed for success, this rejection was also an answer to prayer — I did not want an imperfect organ. I rode an emotional rollercoaster over the next weeks, unsure if I wanted to go through the process again only to be potentially turned away. I had to reset and restart.
Six weeks later I got a second call and they wanted me to report again. Two young donor lives had been lost. This second one would give me a transformed life.
My life — my identity — was about to change. I was pushed down the hall on a gurney into the Operating Room as a Type 1 diabetic. I still had my insulin pump on. Once more, my hopes were high, my prayers fierce for a successful outcome.
Hours later I was out and in recovery as a non-diabetic. Sure, I had a lot of IVs and tubes attached to me, but not one of them was an insulin drip and my pump had been packed away in my belongings bag. My hopes were realized, my prayers were answered.
I now have a solid seven months post-surgery under my belt. Recovery from a pancreas transplant is hard. After all, the procedure involves detaching, moving, and reattaching arteries and veins.
In the first few months, I experienced random fevers, adjusted my medications, and had lab work several times a week because other biomarkers were “off.” I was readmitted to the hospital twice. My new pancreas was happy, it was my kidney that had to learn to coexist with another foreign organ. Even with the mix of frustration and worry, my doctors provided terrific encouragement which made me confident and optimistic about the eventual outcome.
Just as insulin is the lifeline for people with diabetes, anti-rejection medications are the lifeline for transplant recipients. Since my kidney transplant, I have been on four pills twice daily to avoid organ rejection. I will be on these for the rest of my life. For the first six months post-pancreas transplant, I was also on a cocktail of other meds to ward off infection. I am now back to just the handful of pills and lower doses than I was on previously.
I continue to have labs drawn once a week; over time that will decrease to once a month. Never wanting to assume anything and always proactive about my health, I appreciate the regular testing. My doctors were right, the eventual outcome is good — I’m fine and feeling great; my A1C is 4.6.
This is the first year since I started on the insulin pump in 1993 that I do not have a single diabetes accessory attached to my body. I don’t have to figure out where to clip my pump or how to hide my sensor sites. I sleep through the night without being awoken by high-pitched alarms. I exercise and participate in activities without pre-planning and adjusting insulin and food. I leave the house without extra bags of supplies. I enjoyed sugary drinks with my kids this summer. Most importantly, I’m grateful knowing I will be healthier longer with consistently stable blood sugar readings.
While it is crucial I stay diligent in not missing any doses of the anti-rejection medications, my post-transplant medical routine is far less of a disturbance than my daily diabetes to-do list was. Even though I am not totally free from all things medical, my non-diabetic regimen has gained me several hours in my day, reduced the emotional toll that type 1 can take, and has increased my capacity to be more available for others. I can handle it, I’ll take it, no complaints whatsoever.
An Expanded World; A New Identity; A Deep Appreciation
The life-changing reality of medical advancements is astonishing to me. I’m fully aware that transplanted organs don’t last forever and my pancreas could be rejected at any time, but this new normal is pretty sweet. Always mindful that a young life had to end in order to give me life without diabetes, I appreciate the opportunity to live it. Still, although medically I’m no longer diabetic, my identity is forever linked with diabetes. I’m now Anne, the non-diabetic diabetic.
It will take a long time to not think like a person with diabetes. I know I won’t ever lose the ability to speak the diabetic language or understand the struggles. But my world has expanded tremendously — it’s the intersection of the best of both worlds. Thanks to my donor’s family and my miracle-working transplant team at Penn Transplant Institute, I am living my wildest dream. This is now my dream for all people with diabetes. Having been on the other side as Anne with diabetes, my new identity and lifestyle without it is one that I never — not for a second, ever — take for granted.
If you want to get in touch with Anne to learn more about her experience, she encouraged us to share her email: email@example.com