It’s weird talking to yourself. It’s even weirder when you’re talking to someone else and you hear your own voice.
That’s what I thought immediately after having a conversation with islet cell transplant recipient Gina Marchini, 33, who was diagnosed with type 1 diabetes at the age of nine. Recently, she received an islet cell to cure type 1 diabetes. Gina’s transplant took place at the City of Hope, in Los Angeles, a research and treatment center focusing on diabetes, cancer, and other life threatening conditions.
Back in 2006, I, too, underwent islet cell transplant after living with type 1 diabetes since the age of eleven. Like Gina, I was a candidate for islet cell transplant because I suffered from debilitating hypoglycemia unawareness. Also like Gina, I underwent two islet cell transplants. There is, however, one big difference between the procedures we each underwent. For Gina’s second transplant (two years after the failure of the first) researchers at City of Hope added a component of treatment called anti-thymoglobbulin induction, or ATG, which is designed to keep the body’s immune system from harming the new islet cells.
While my two transplants both eventually failed, the enhanced protocol for Gina’s trial offers a much more promising approach to eventually curing type 1 diabetes. When I spoke to Gina in September she revealed that even though our trials had clear differences, the emotional experience of going through a rigorous clinical trial was similar in that it was challenging, frustrating, exhausting, and ultimately, rewarding.
Gina, where are you now?
I’m in California, at the City of Hope National Medical Center, in LA. It’s close to Pasadena.
Is that where you live?
No, I live in Palmer, Alaska. It’s a small town north of Anchorage.
Have you lived there all your life?
All my life, yeah, except for when I went to college in Washington state.
Why are you in the hospital?
It’s my two-and-a-half-month checkup. Today I had tons of labs. The worst one was a glucose tolerance test.
You had to drink that icky, syrupy stuff?
No, thank God. It was an IV glucose tolerance test. They took the oral glucose one off the protocol this time.
What was your motivation to go through with a clinical trial for an islet cell transplant?
I started this process in 2010. I was diagnosed with type 1 diabetes when I was nine years old. In college I began suffering from severe hypoglycemic unawareness. It would hit me at night mainly, and would result in seizures. As time went on, they started happening more and more frequently. In 2010 I was 28 and I asked myself, “Is this the way I am going to spend the rest of my life?” I was not willing to say I was OK with accepting that.”
How did you hear about the possibility of an islet cell transplant?
I had seen a magazine from the JDRF with an article about islet cell transplantation. But, I never gave it much thought afterward. I was sitting at home, after having several major seizures back to back, and was feeling sorry for myself. (Laughs.) Well, remembering that magazine on the coffee table gave me motivation to start looking for a trial that I might qualify for because I wouldn’t accept that suffering was my fate.
Were there any in Alaska?
No, there were none in Alaska. But, I found one through City of Hope, in California and qualified in 2010. I figured if this was something that could change my life, why wouldn’t I travel wherever I needed to? I had my first transplant in 2011. In the years between the first transplant and my current one, they improved the protocol. For my second transplant, in July 2015, they added an anti-thymoglobulin (ATG) infusion that’s supposed to kill off the T cells in the body. They think the change from the first protocol (with no ATG) will increase the long-term rates of success. In my case, the vast majority of the T cells in my body were killed off in the first week after my second transplant. By depleting the T Cells at the time of transplant, then slowly bringing them back to a safe level, the chance of transplant rejection is greatly diminished.
Did you feel any differences between your first and second transplants?
The first transplant kicked my ass. It was because of all the meds I was on. I had a variety of injections and oral medications after the transplant, and I was on fairly heavy immunosuppression. I was tired all the time for quite a long time after the first transplant. The second time, this time, I feel like my regular self. I don’t get super tired, maybe because my body is already used to taking most of the meds.
Did you remain on insulin after either transplant?
After the first I did. After the second [transplant] I stayed on my pump for a while, but had a very small basal rate and I would just bolus for meals. Three weeks after the transplant they said I needed to try to go off insulin. It was scary… I have relied on an external insulin source for so many years. I couldn’t believe that I would have the capacity to create the insulin I needed. But, I did. I took my pump infusion out at the hospital while everyone were sitting there. The first no bolus meal was only veggies. And … my blood sugar didn’t go up. It felt weird. It still feels weird. It is weird. I’ve been diabetic for 24 years. What I don’t remember is life before diabetes. I don’t really know how regular people feel, but I suppose it’s something like this.
Are you hopeful about the future now?
I am, but I’m still waiting to see what happens. I went through a grieving period when that first transplant was exhausted. I didn’t want to go back to the way my life was pre-transplant, living in fear of the next seizure, afraid to be alone, afraid to go to bed at night. In my mind this is definitely a step toward a cure, but, because of that first transplant experience, I am a lot more guarded this time. I’m living blood sugar to blood sugar. But I want people to know, I’m just a regular person who joined a trial. This experience shows that if your life isn’t going the way you want it to, you can do something to make it better. But, it’s not like it’s super easy. I mean, I’m a kindergarten teacher and when I went back to work after the transplant I had to wear a mask [to avoid infection]. The kids eventually got used to it, but it was a significant adjustment for all of us. Then, I got a little cold and when I told the transplant team they said I had to go to the ER to make sure I was all right.
And did you?
Yes, I went to the ER. That’s what I had to do, so I did it. It turned out to be nothing. But, in general, little things can turn in to big things when you’re a diabetic, whether you have had a transplant or not.
Do you have people supporting you in this?
Yes, I’m engaged. And my fiance is really excited about the whole thing. I met him after the first transplant, just when that transplanted islets started to lose the ability to produce insulin. He’s been extremely supportive and wonderful. I also have my family- especially my mom, who has been with me since the first day of my diagnosis back in 1991, was with me for both transplant recovery periods, and has been there every day in between.
Would you encourage other people to look into joining a clinical trial?
I would love to be a testament that there is hope for other type 1s out there who might feel defeated by this disease. I would encourage other type 1 diabetics, if they think it might be right for them, to investigate it further. Anyone considering it should realize it’s not easy. After this transplant I was in the hospital for seven days. I stayed in California for the first month after transplant for near daily follow up visits. Now, I am traveling from Alaska to California every three months. It’s a considerable expense with the flights and lodging. So, it can be challenging. So, it has to be worth it to the patient, and everyone is different.
Is it worth it?
A few weeks after this transplant, when I would eat and not have to take insulin, I thought to myself, “Is this what normal people feel like? Wow!” But like I said, I’m still guarded. I could probably embrace this feeling more fully if the first transplant hadn’t ultimately been exhausted and stopped working. But, I am very optimistic for what this means for our future as diabetics. It is worth it to me.