10.5.16

Post-Transplant Thought: Who Am I Without Diabetes?

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So I don’t have diabetes anymore, I think. Or at least for now I am on a diabetes vacation. After twenty two years living with type one diabetes, I am having somewhat of an identity crisis.

As people with diabetes, we are thinking constantly about our health. We are so in tune with how we feel throughout the day. From symptoms of high and low blood sugars, to fatigue, to nausea, to blurry vision, to cloudy thinking, we feel it all on most days of our lives.

Although there have been times in my life where I’ve checked out of those thoughts and tried to deny my diabetes, it never went away. As much as I wanted it to, I was stuck with checking my blood sugar, estimating carbs along with exercise and dosing my insulin.

Years of struggling with high a1cs seemed to subside when I was finally able to bring my average down and minimize my roller coastering BG. I finally had my first a1c under 7 and three days later I got the phone call.

This phone call inevitably lead to where I am now. On my diabetes vacation, as I started to call it. Let’s start from when I received the call.

I was just getting home and my transplant coordinator at UCSF Medical Center called me. This was odd because I had just spoken to her the day before when she informed me that I was going on the simultaneous pancreas kidney transplant list.

I had told her yesterday that I did not want to be on this list because I wanted to have my kidney transplant sooner than later. This was going to be possible because my father agreed to be my living donor and was a good match. My kidney function was declining and I was afraid to start dialysis while I waited for both a pancreas and a kidney.

Well, that was not what happened. This time, she called to tell me to pack a bag for two weeks in the hospital, and to come in right away. She said I had a possible donor of a pancreas and a kidney, right now!

I’ve tried to put into words what this moment felt like and it was definitely an overwhelming sense of disbelief. My mind could not wrap around what was about to happen. I didn’t have time to think deeply about anything or that I didn’t even need my CGM or insulin after this surgery. So I packed all of my supplies and rushed to the hospital.

Two days later the surgery happened and I woke up from surgery with a thirteen inch scar down my abdomen as the only proof something may have happened while I was asleep. I still check to make sure the scar is there when I wake up every morning.

After surgery, I was in pain. I felt so sick. I wanted to give the extra organs back and get back my insulin and test strips.  Between the nausea and vomiting, I wanted them to rip open my abdomen again and take them back out. I was scared and overwhelmed by the unknown future I had ahead of me. Would I feel like this forever? Would I feel like this for a while? Would it be worse than the highs and lows of diabetes?

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The approximate anatomy of my lower abdomen now

For a few weeks in the hospital and for these first few months I have gone between nausea and dizziness to moments of complete gratitude for feeling the healthiest I have in years. In these moments I can tell my body feels a new lease on life.

I was on the transplant list for one day. I don’t know how this could have happened for me. It’s feels like I am getting away with something terribly wrong when I eat a cup (or half a pint) of ice cream and my blood sugar stays at 123.

But I’m not getting away with anything. There so many amazing advancements in medicine that I have been given the chance to continue to live my life.

I still wake up to check my BG sometimes and one night recently I woke up, checked (97) and couldn’t fall back asleep. I was ruminating about how to think about my diabetes now. Is it gone? Will it come back sooner than later? How long will my vacation be? Do I still call myself a diabetic?

Here’s the conclusion I have come up with that will allow me to keep my identity with diabetes:

I will always have type one diabetes. My own pancreas does not produce insulin, so therefore, I, Tara Layman, will always be a person with diabetes. It is part of who I am and the person I have grown into over so many years living with this chronic illness. My treatment for my diabetes at this time is a transplanted pancreas from a very generous donor and their family.

That way, if it does come back I can welcome that part of me back from vacation and say, “Well, you still suck but I’ve got this, we’ve learned a lot together and apart, and I understand how to live with you. Let’s do this.”

Tara Layman has been living with T1D for twenty two years. Living with diabetes has shaped her life significantly, leading her to a career in photography and co-founding the diabetes advocacy project T1D Exposed. Tara is a freelance photographer in Northern California who recently found herself on a new path in her diabetes journey after a simultaneous pancreas and kidney transplant. You can also find Tara on Instagram.

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