Multiple Transplants, Many Reactions

When people hear that I had four bone marrow transplants, their reactions fall into three categories summarized like so:

1. Wow! That’s so inspiring!
2. Wow! That’s so scary!
3. You had WHAT? How can you have four liver transplants?

To back up, a few people have said that my first one didn’t count, and that in actually I “only” had three even though the process was the same for all. That’s because my first was an autologous transplant, using my own stem cells, and that kind doesn’t turn your whole system upside down and inside out like an allogenic, or “allo,” transplant does. Even so, three is a pretty big number in transplant land also.

Since I like to do things differently, I’ll address the responses from the bottom up.

Confusion over stem cell transplants

3. The liver transplant thing. I was in the hospital, shaking and shivering, with a high fever resulting from a urinary tract infection that had gotten so bad I could barely stand up. I had called an ambulance, not knowing what was going on, and was lying in a hospital bed when a nurse looked up from my chart and asked about my liver transplants. I was in no mood to explain. So what if my chart is as thick as the Mueller Report? Surely she could have read at least part of it.

I wanted to shout, “Read the chart!” But I didn’t do it. I just told her that they were bone marrow transplants. By the way, somewhere along the line, the terminology changed to stem cell transplant. They are the same thing and I don’t know why they did it, but in the interest of consistency, I’ll stick with bone marrow transplant, or BMT.

Fears and worries abound about transplants

2. The scary thing. I really don’t want to scare people. In my volunteer work with the Dana-Farber Cancer Institute’s One-to-One program, through which I talk to someone awaiting a transplant, I’m hesitant to tell the whole story. So I start off by saying that some crazy things happened to me, that I obviously survived, and that the things that happened to me are unlikely to happen to the next person. They usually want to know, and they seem to appreciate my honesty.

I know what it’s like to over-identify with disease or even death. I get a chill when someone dies from AML. I think, “That could happen to me! ” Then I have to set myself straight. “Well, it could, but it didn’t.”

In my recently completed Livestrong Program at the YMCA, most of the participants were breast cancer survivors. “Great, I thought, I could get breast cancer.” Then I said to myself that proximity does not make you sick, unless you’re talking about a cold. So, just reading about my four, or three, transplants in no way means that you will follow the same course.

Giving hope to overcome obstacles

1. The inspiring thing. Ten years ago, I was in a coma, and when I woke up, I couldn’t talk, I couldn’t walk, and I couldn’t even roll over in bed. Now I play tennis and run road races. I’ve been told that people find my comeback inspiring, and that it gives them hope that they can surmount crazy obstacles like I did. I’m glad to help out!