Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 15
Robert Ramirez, DO, FACP: Now, I didn’t see you for a long time after your transplant.
Francisca Bellard: This is true.
Robert Ramirez, DO, FACP: How long were you in the hospital?
Francisca Bellard: I am an exception to the rule. The doctors did tell me 4 months, and they did tell me 2 months in hospital care. I was there for 8 months. I have a very rare blood type, and as I said, I had lost a lot of weight. Without TPN [total parenteral nutrition], I would have withered away. I stayed on TPN for 8 months while I was there, and when I went in for the surgery, I was there for 30 days. That’s full rehabilitation, able to go home, and be in my house. They told me they could have let me go in 20 days but the hospital regulations were that I stay there for 30. Now, I did go back a week later because of the stress of everything. You don’t really understand cross contamination when you just walk outside and then walk into your house or how immune suppressed you are, especially after they take 7 organs out of your body and then put 5 back in.
It’s a different feeling. Underneath my skin, they had to use this mesh that held me in and it feels like I’m wearing a T-shirt underneath my skin all the time. Sometimes I feel it is itching a little bit, and think, “That’s my fake skin that’s in there.” I have some anchors that are in place because the organs I got were so small. That was an issue that I had with the doctors, with the surgeons. In my mind, I’ve lived a long life. That doesn’t seem like a lot for someone who’s 39. But to find out that I got organs from a 12-year-old was really, really devastating to me.
But at the same time, the doctors sat me down and explained that it wasn’t going to go to another child. It could have gone to somebody who was even older than me, and I was lucky enough that he matched just enough. They said when they put the organs in, they just settled like they were meant to be. So, instead of 18 to 20 hours, I had a 7-hour surgery. Normally, you have to wait 2 or 3 days after that surgery until they open you back up to connect your intestines to your colon, so you have an ostomy. But they had to hurry up and do it in 2 days because I was already healing so quickly. It was quite an experience.
Robert Ramirez, DO, FACP: Tell me what it was like coming back to Louisiana.
Francisca Bellard: The first time I came back was for the hurricane. We had a hurricane in Miami, I was at home instead of in the hospital, and it was set that it was going to be without water or electricity for a month. So, we drove back with everyone else who did the mass exodus from Florida, which was a concern, my doctor said. I could get some kind of infection just by using a bathroom on the way home. But I was there for a month, seeing my family for the first time healthy. My nephew, my oldest nephew, had waited to get married until November. When I went home for November, he got married. During that time, I told him I was going to be able to dance with him at his wedding. When I came out of the hospital I was still using a walker, then I progressed to a cane. By November, I was up and able to dance with him at his wedding.
Robert Ramirez, DO, FACP: Wonderful.
Francisca Bellard: Yes.
Robert Ramirez, DO, FACP: Then I saw you in December.
Francisca Bellard: Yes, you did. When you saw me in December, I hadn’t been released back to care in Louisiana. My surgeons there said when you get a transplant there that you’re supposed to be there for 2 years. But I was doing so well, and I did miss home and my support team. I just asked if I could come back early, and my surgeon said yes, it wouldn’t be a problem. I do have to fly back every 3 months as of right now to see him and my team, and it will decrease to every 6 months and then to every year. I take a lot of pills to prevent rejection. Any kind of cold that I might get is really an issue. But I feel like I’m taking just as many pills now as I did when I saw you before my cancer, because I was taking probiotics and I was taking all kinds of pancreatic enzymes to break down all the food that I was eating. For me, I was constipated a lot of the time, but I was active. I never really had any kind of diarrhea like some of the other patients. I was a contradiction in terms of everything that I read up on and everything I came in contact with.
Robert Ramirez, DO, FACP: How are you feeling now? I saw you at a barbecue festival recently.
Francisca Bellard: Yes, I was at the Hogs for the Cause festival. I recently ran a marathon, and I just got back from Seattle from a hiking trip in the Hoh Rain Forest. That will make it a year after my surgery in July of this year.
Robert Ramirez, DO, FACP: That’s wonderful.
Transcript Edited for Clarity