After Michael Schofield had his first islet cell transplant in April 2012, he wrote a letter thanking the family of his donor. It was over a year before he heard back from the donor’s mother. That's when he learned they had more in common than the young man whose cells Michael was carrying. He was en route to meet the mother last June, when he got another exciting piece of news: UCSF had a donor for the second islet transplant that he needed. In the space of a week he connected with one donor's family and started a new connection with another. He talked about what the week was like:
How did you hear from the donor’s family?
I was sitting in Starbucks one morning checking my email. There was an email from a person — I didn’t know who it was — telling me all about her son. Eventually I realized it was my donor’s mother. At the end of the email, she wrote, "It's a small world, isn't it?" It turned out she works for AT&T, just like me. Her name is Liz. She's been with the company for 32 years and is a supervisor at the contact center in Palo Alto. We started texting back and forth on AT&T's internal texting system, talking about her son Michael.
Did you want to meet each other?
We set up a time to meet during my next visit to San Francisco; I go regularly to pick up my immunosuppressant drugs. I was on my way there, changing planes at John Wayne Airport, when I got a message saying that there was a donor ready and I should come immediately for the second islet transplant. Here I was on my way to meet my first donor’s mother. I thought to myself maybe someone’s looking down on me and thinking “That’s a great thing to do. Here’s another gift for you: another donor.” That’s what went through my mind.
Did you still get to meet?
I got the message from UCSF on a Friday. That Saturday I met Liz for lunch at a restaurant at Pier 39. She brought along her other son. She called me on the phone, and told me she was wearing a Donald Duck T-shirt and she would wave so I could find her. We joined arms and gave each other a big hug.
We talked and shared photographs and took pictures for the AT&T website. I brought her a framed photo of my family and myself. She told me the date of the accident that killed her son. I realized the accident happened on my birthday, though I didn’t tell her that. Then she said he had a daughter who was six. I said, "When is her birthday? I’d like to send her a gift." She said July 6. That’s my wedding anniversary. I didn’t say anything, but wow! Then when we were leaving, I put my sunglasses around the back of my neck —that’s where I normally wear them. As I’m walking away, she said "Hey Mike, How long have you been wearing your sunglasses like that? A long time?" I said, "No, just in the last few months." She said, "My son wore his sunglasses like that for the past ten years."
Was it emotional meeting her?
Oh my God, yes. It was a happy moment, but also a sad moment. I have three teenagers of my own and I just couldn’t imagine her pain. We still go back and forth texting quite often. Because the thing is you have good days and bad days. On bad days she needs a little lift.
Did she give you a picture of Michael?
Yes. I keep his picture on my bathroom mirror, along with a cross his mother made me. Sometimes I talk to the picture, like "It’s going to be a tough day today," or whatever. All in all the guy's a part of me now.
Did you share with her that you were having another transplant?
Yes and the day of the surgery she sent me a text: "Hey I know you’ve got the procedure today. Don’t worry. My son is within you, he will protect you, SO SMILE ."
Were you expecting to have a second transplant?
I’ve always known there was a possibility I would have to have two. The first one gave me 750,000 islet cells, and you need over a million cells. And the immunosuppressant drugs you take after transplant don't allow those donor cells to reproduce. The heavier you are the more cells you need. I weigh 192 pounds; I cycle a lot and have a lot of muscle mass. Normally people get a second transplant within six to seven months of the first one. For me it was 13 months so I was lucky.
Had you been having trouble with your first set of donor cells?
I wasn't having hypoglycemic episodes but my sugars were starting to rise. I did a motorcycle ride from Arizona to British Columbia, and a 104-mile bike ride, and both times I let myself get dehydrated to the point where some of the cells started to die and my sugars started to rise. That's something I will never do again.
Are you sure that killed some of the islet cells?
It must have because I noticed my sugars started to go up afterwards. So I always hydrate a lot now.
You had been insulin-free. Did you have to start taking it again?
I started again when I noticed my sugars rising. Just a tiny amount to take my sugars down. As soon as I had my second transplant I came off it again after two to three weeks.
Was the transplant procedure the same as the first?
Yeah it was. I asked Dr. Posselt if I could look at the islet cells because I heard they look like gold dust. He said, "Here," and pulled out a vial of cells and it was true — it was like looking at gold dust. It was amazing.
How many were transplanted into you this time?
I think about 850,000. So if you figure that 100,000 died, I'm still left with 1.4 million overall.
Do you notice any difference between the first and second transplants?
This time around I want to really, really take care of the transplanted islet cells. So I used insulin on occasion at first, like if I was on a business meal and know I will eat more than I should. I want these babies to latch on and be good.
How are you feeling?
I feel fantastic.
Will you contact this donor?
Absolutely. I just need some time to put my head together to write a letter. By the way, when I met Michael’s mother, she said that other people got her son's heart, liver and lungs, but they never sent a thank-you letter. I was the only person to do it.
Does the transplant team suggest recipients write their donor’s families?
It’s up to you, but some people may opt not to do it. They may be afraid or don’t understand. I’m not built that way. I think it’s important to say thank you — that’s just the way I look at life.
Interviewed by freelance writer Susan Freinkel.
Photo by Tom Seawell.
400 Parnassus Ave., Seventh Floor
San Francisco, CA 94143
Phone: (415) 353-1551
Pre-Transplant Fax: (415) 353-8708
Post-Transplant Fax: (415) 353-4183