Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 14
Robert Ramirez, DO, FACP: We sent you to Miami.
Francisca Bellard: Yes, you did.
Robert Ramirez, DO, FACP: After, we said, “You’ve got no disease elsewhere.” We said it was only in the pancreas and liver. You met with the surgeons there. What was that like?
Francisca Bellard: Nothing really prepares you for the first instance of meeting the team, which is your preapproval team, which will end up becoming your transplant team. But in the preapproval team that you meet, you’re going to meet with a pharmacist, a therapist, someone who just specializes in intestinal matters, someone who just specializes in your liver, and another one who just specializes in your pancreas. When they told me that the surgery was going to take anywhere between 18 to 20 hours, I was floored. They also told me that I would be in the hospital somewhere around 3 to 4 months in the ICU and then spend another 2 months in a regular room. I was looking at 6 months just in recovery. But on the other side of that was all the side effects that could happen, all of the downsides. My organs could reject it. They could not fit right. I could never find a donor. There were all these possibilities. But to me, it was my only option. I didn’t have any other option at that point in time.
The doctors there were very frank with me. They said, “You really have to look at everything that’s going to happen to you. We’re never going to give up on you. We’re going to be there when it’s the worst. Now, we’re not going to put you through something if you’re not going to survive, but even at the worst point, we will be there rooting for you.” That helped me make my decision. If I was going to do this, I wanted people backing me, and I had a great team at home but I needed another team there. And that’s one of the requirements that the approval team has. They’re there, you need to be there, you need to have the care team that’s going to be with you, and you’re going to have to relocate to where they’re at—within 4 hours of the hospital. In Miami, that means you’re about 30 miles from the hospital. You can’t be further away than that. It was great. I got to meet with my surgeons, a series of doctors. It took 6 months of testing, both in Louisiana and Florida, before I got my final approval. At that point in time, I hugged all of you goodbye and moved to Miami.
Robert Ramirez, DO, FACP: Yes.
Francisca Bellard: So, it’s been quite an adventure.
Robert Ramirez, DO, FACP: Think about the day before your transplant and getting that call.
Francisca Bellard: I had actually gotten called a previous time. They tell you that you’re going to get false calls. You’re going to get there, they’re going to make sure everything matches, but when they go in to harvest these organs, they might not be right. They’re going to call you in, so you’re ready to get them, but you won’t know. I got a call in March, but the pancreas was fatty so I had gone home. What I didn’t realize was the toll that 1 call had on me because all my hopes were on that 1 call. I felt the sheer depression of what cancer does to you and just thought, “This is never going to happen. This is not going to happen.”
In July, they called, and I went in to the hospital, the whole time thinking, “This is not going to happen.” I woke up fully attached everywhere to every kind of bag available, and it was just shocking. I don’t think that there’s anyone who can prepare you for that. Nothing can really prepare you for waking up that next day and feeling healthy. The doctors said that they went in and they couldn’t lift my liver out, so they put this mesh in there and they went and scooped my liver out. They said it only had a day or 2 left. Literally, if I hadn’t gotten that transplant for 2 more days, I wouldn’t be here talking to you. But they also told me regarding the core, the biggest tumor that had been there, that they type-dated it and it was anywhere between 12 to 15 years old. So I, at the time I was diagnosed in 2014—I was 35, I’m 39 now—had been sick longer than I had been healthy and I didn’t know it.
Nothing could have prepared me for that moment of feeling healthy. I remember everyone saying they took pictures of me. Of course, I looked crazy, but they took [pictures] of me and it was the first time they had seen color in my cheeks. I am tan, I have a little olive complexion, but it was the first time they had ever seen any color come to my face. I looked back at pictures even from childhood and I hadn’t been healthy. It’s a totally different feeling now knowing how I felt before, definitely.
Transcript Edited for Clarity