NATIONAL DONATE LIFE MONTH-MADISON, WI - BARBOO FAMILY'S WAIT FOR ORGAN DONOR A STRUGGLE
By Christie Taylor, News Republic
| Posted: Friday, April 9, 2010 8:52 pm |
Marshall Curtis, right, and wife Julie are hoping to raise awareness of the need for organ donations this April, which is National Donate Life Month. Marshall, diagnosed with a genetic condition that is slowly killing his liver, has been waiting since August for the transplant he needs to stay alive, and says the uncertainty has been an enormous burden for the couple.Photo by Christie Taylor / News Republic
Since he was a teenager, Baraboo resident Marshall Curtis always has been a "passive" proponent of organ donation, though he signed up to be a donor when he turned 18, even against the wishes of his family.
"It was met with ... I don't know if ‘ridicule' or ‘shock' is a better word," he said.
Now 46 and waiting for a liver to replace the one that is slowly dying from a genetic condition, Marshall is even more adamant that the country needs more people willing to give up their organs - ranging from corneas to hearts - should they die suddenly in a way that leaves these organs intact.
April is National Donate Life Month. And according to data from the national Organ Procurement and Transplantation Network, there were more than 106,000 people on the waiting list for an organ donation as of April 5. In contrast, only 28,000 transplants were performed in 2009, with the help of 14,000 donors.
Marshall's wife, Julie, said she still sees a great deal of misinformation about the transplant process, and how organ donors are treated.
"A friend of mine has this conception that if you say you'll donate your organs, they're going to perform experiments on your body," she said. "It's very tightly controlled and all very respectful."
She and Marshall should know. Since Marshall was diagnosed with a hereditary enzyme deficiency and told he needed a transplant last summer, the couple has seen its entire future become uncertain.
Told he had about an 80 percent chance of not surviving if he didn't get the transplant within two years, Marshall said the emotional strain has been heavy for the couple as they've waited for conditions to be right for his transplant.
"I've just been an emotional wreck," Julie said. "You'd just look at me and I'd start crying just because you don't know what to expect."
Marshall, who neither drinks alcohol nor smokes, said he always has been healthy, though overweight. Last summer marked his first visit to a hospital for serious health problems, and since then he has been hospitalized five times for complications from his liver disease. Now, though approved for a transplant, he must first lose some excess weight before he will be fully eligible, because of the logistical problems fat tissue could pose during the lengthy surgery. He said he lost about a third of the required 90 pounds since December, and, with tight diet and fluid restrictions, expected to be ready for surgery by the end of the year.
In the meantime, Julie said, they have to hope he doesn't get worse.
"Today is a good day, but it could change tomorrow," she said. "Tomorrow we could wake up and he could be in the hospital."
As an example of how quickly a stable condition can turn around, Marshall cited an incident in early March when, during a medical visit to Rochester, he went from being slightly nauseated to collapsing on the floor of his room within less than half an hour, deliriously ill.
But Marshall and Julie say they're lucky. For the most part, Marshall remains stable, and they've learned how to manage most of his symptoms. In addition, Marshall's 31-year-old brother, Lauren, has "not so much volunteered as insisted" on donating part of his own liver. And as a blood and height match, there's a good chance he'll be able to. The existence of a live donor would save Marshall what could be years of waiting.
Lastly, they say, Marshall has good health insurance and his job, as a vice president for a New Lisbon company, gives him more flexibility than most people. Because of side effects of his poor liver function, he has problems with memory, fatigue and thin blood, and only can work about three-fourths of a full schedule. Yet, he remains employed and able to support the couple.
"I am in a much much better position than probably the average person out there," Marshall said.
The two will celebrate their 25th anniversary in July, though not as they had originally planned. When they first married, Marshall said, they had agreed to raise their family first, and then travel and "have some real fun" when the nest emptied - as it did just before Marshall fell sick when their youngest child graduated from high school.
"Originally we thought we'll take a big trip and do something," Julie said. "Then last year, I was wondering if he'd even still be here by our 25th."
Marshall said regardless of the outcome, the process has changed him. Once a person to "wait for the perfect or the best," he is more interested in living in the now.
"Houses may come and go, cars may come and go, vacations may come and go," he said. "What's really important is the time we spend together as family, it's the time we spend the two of us."
Marshall Curtis is keeping a weblog of his experiences and thoughts during this time, atwww.onemansstory.com