By Sarah Hankel
One person's tragedy can become another person's miracle. It's a hard thing to come to terms with as two Eastern Iowa brothers, Richard and Fred Scott, are well aware. Both desparately need heart transplants and the wait is killing them.
Richard, 64 and a retired school teacher, and Fred, 48 and a former farmer and tractor mechanic, have congestive heart failure — the same disease that claimed their parents' lives. But with the progress that medical science and technology has made in recent years, the Scott brothers have a much better chance of surviving, that is, as long as someone else doesn't.
"How do you pray for something like that? How?" Richard asks from his room in the University of Iowa Hospitals and Clinics where he has been situated for the past three months.
"That's where faith comes in. Knowing that God's will will be done," Fred says while visiting his brother one summer afternoon. Fred was only recently discharged from UIHC after a six-month stay.
Both Richard and Fred have known for quite some time that their conditions would worsen to the point that drugs and mechanical devices would be obsolete. That time has come for both of them and like nearly 70,000 other Americans, they wait and pray, pray and wait that a matching donor will come through.
Fred, the younger of the two, has had more severe complications from the disease. For the past 18 months, his heart has been kept pumping by a left ventricular assistive device (LVAD), a mechanical apparatus implanted under his abdominal wall, hooked through a series of wires to a bigger mechanical device that he hauls around on the back of his wheelchair.
Last December, the LVAD which usually only lasts about 18 months, collapsed when a hole developed in the diaphragm of the device. Without a donor available, doctors were forced to implant a second LVAD and hope for the best.
Implanting a second LVAD is unusual, but not unheard of, says Dr. Douglas Behrendt, head of transplantation at UI Hospitals. "These units are tested under exercise conditions, at different pulse rates, watching the blood flow," Behrendt says, listing all the stringent requirements that the devices must meet. However, in Fred's case it wasn't the device doctors were worried about, but the ability to get through extensive scar tissue to replace the first LVAD.
The procedure went off without a hitch, Behrendt says, and after a "... good long stare at the hospital walls ...", Fred returned home and picked up his computer programming classes he's been taking through Indian Hills Community College.
With winter came a nasty infection and it put Fred right back into UIHC's Cardiac Intensive Care Unit for more than six weeks.
About two weeks into his stay, Fred had a permanent visitor when his brother Richard joined him on the same floor of the hospital.
Although Richard is 16 years older than Fred, his disease has progressed more slowly. He has not yet had to succumb to relying on an LVAD, but intravenous drug treatments are stabilizing his heart's pumping action and make it necessary for him to remain in the hospital.
"As long as I can use the real thing, I'd like to," Richard says. But he knows he, too, will need a new heart soon.
While both men are on the national waiting list for organ donation, Behrendt says the brothers are not in direct competition for the next available heart. Because of their difference in physical stature — Fred is 5 feet 10 inches and 220 pounds; Richard is 5 feet 11 inches and about 155 pounds — each needs a different kind of heart.
"You can't put a Volkswagen engine in a Cadillac and expect it to run," Behrendt explains.
While the wait may be literally killing Richard and Fred, their family members also feel the minutes creep by. Donna Ford, one of Richard's four adult children, says the most hardest part of this ordeal is knowing that somebody has to die so that one of the brothers can live.
"We're trying to do whatever we can as a family, to make others more aware of donations," Ford says. "I just sent in forms to the Iowa Donor Organization to volunteer to go and speak to schools and groups. People need to be more informed about organ donation. You have to make sure your family members know your wishes."
Groups stress need for organ donations
According to the Coalition on Donations, more than 70,000 Americans are waiting for matching donors for organ transplants. A new transplant recipient is added to the list every 13 minutes. And 15 of those potential recipients die every day.
Paul Sodders, the public relations manater of the Iowa Donor Network (IDN) says more than 300 Iowans are on the national waiting list and the clock is ticking. The only way to win the race against time, Sodders says, is to educate the general public about organ donation and how to become a committed organ donor.
"Less than 1 percent of all deaths can even be considered for organ donation," Sodders says. "We can only procure organs from those who are pronounced brain dead."
He goes on to explain that even though your driver's license might identify you as an organ donor, it doesn't mean your final wishes will be carried out. In Iowa, and many other states, legal consent from the deceased's next of kin must be obtained before donation can be considered.
In the coming year, Sodders and IDN staff are hoping to redefine Iowa's law by instituting a first-person consent ruling which would put the power in the hands of every individual adult.
Also on his side is UIHC's Anxiously Awaiting, a support group for transplant candidates. But while the counselors and members strongly support IDN's efforts, Anxiously Awaiting his designed to help it's members cope with the physical pain, frustration and daily life.
Coordinate by Sara Vance, Carolyn Laxson and Yuk Sum Chung, the group has been meeting monthly in the fall, winter and spring since 1988. Initially offered to only heart and lung transplant candidates, the group opened up and now all awaiting life-saving donations are welcome, and, unfortunately the group grows almost every week.
For more information about becoming an organ donor, call (800) 831-4131 or log on to www.iadn.org.
