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The Most Valuable Gift
Every year thousands of sick patients wait for "the call" that says a donor organ is available for them. Are you a registered donor?
By Cynthia McFarland - Monday, November 28, 2016
Tim Rooks knew what it meant to live life to the max.
An athletic, adventurous, fun-loving man, Tim poured his zest for life into everything he did.
It was this passion for living that fueled his decision to register as an organ donor.
When hypertension caused some of his arteries to dissect, emergency open-heart surgery was necessary. In April 2014, Tim was flown from Seven Rivers Hospital in Citrus County to UF Health Shands Hospital in Gainesville, where successful surgery was performed. Although doctors gave Tim, who was just 51, a good prognosis for recovery, he suffered a major stroke in the hospital. Both his sisters, Terry and Deena, were at his side when this happened.
“I couldn’t remember ever having a discussion with Tim about him being a donor, but at the hospital, they told us he was registered,” says Terry Rooks, who lives near Homossassa. “We read his living will, and he had even specified no pain medication if it would affect his organs for donation. He had specified that his organs, his corneas, tissues and even bone, anything that could be used would be donated.”
Terry and Deena wrote a declaration in recognition of their brother.
“The doctors read this over Tim in the operating room when they took his organs,” Terry notes. “It was special for us that they did this.”
Because of the condition of some arteries, not all of Tim’s organs were able to be donated, but his liver and one kidney were transplanted.
“One of the things my brother always said—one of his ‘Tim-isms’—was that you only get one chance at life and you need to live it to the fullest,” says Terry. “He did that, but he also thought of others. This gift of life through donation was him thinking of others. He made such a difference in their lives, and it brought peace and comfort to us knowing that part of him lives on.”
A long-time teacher in Citrus County, Terry retired shortly after her brother’s death. She frequently visits high schools in Citrus and surrounding counties to speak about organ donation.
“Tim has a legacy that goes on,” says Terry. “By giving this gift of life through organ donation, people can make an impact even after their death. We later learned that both of the recipients are grandfathers with kids and grandchildren. My brother never had any children, so in a way, now he does.”
On the Receiving End
When Ashley Kennen went on the national transplant list in June 2010, her prognosis was so poor doctors didn’t think she would make it to Christmas without a life-saving double lung transplant. Not that they told Ashley this at the time, of course.
Born with cystic fibrosis, which damages the lungs and digestive system, Ashley, who was raised in Gainesville, still managed to live a fairly normal life, albeit one filled with daily medications and frequent hospitalizations.
She was working as a cardiac sonographer when she got pneumonia in October 2009. Ashley was so sick, her weight plummeted to just 80 pounds and she had to be on continuous oxygen.
Amazingly, Ashley had barely been on the waiting list for six weeks when she got “the call” on June 19, 2010. Excited but unafraid, she met the transplant team at Tampa General Hospital and was prepped for surgery. Her transplant was facilitated through LifeLink of Florida.
“The next thing I knew it was three days later in ICU,” says Ashley. “When I first woke up I felt more congested than before; it took several days before I was really able to breathe. I thought, ‘So this is what it’s supposed to be like.’”
Ashley, now 32, and her husband, Jonathan, live in Leesburg, where she is a happy stay-at-home mom. They have fostered six children and are currently in the process of adopting three siblings, ages 4, 7 and 11, as well as their first foster child, who is now 18. Ashley has also trained four therapy dogs.
All Ashley knows is that her donor was female. Because Ashley herself is very petite, she suspects the donor may have been a child.
“Once each year since the transplant, I’ve written a letter to the donor family,” she says. “They haven’t written back, but I want them to know I try to live for her and that I’m grateful.”
Donation Can’t Be Taken For Granted
As with many sensitive topics, there are a number of misconceptions about organ donation.
One of the most common, often said jokingly, is that doctors won’t try hard to save you when you’re registered as a donor. You needn’t worry about this one—every effort is always made to save the patient.
In addition, it takes such specific circumstances for a person to become an organ donor that only three in 1,000 people die in ways that make this possible. For example, the organs of a person who dies at the scene in an automobile accident can’t be donated. To be a “deceased donor,” the patient must be in the hospital when he or she dies and on artificial or mechanical life support, which keeps oxygen-rich blood flowing to the organs.
Doctors perform a series of tests to determine if brain death has occurred. In this situation, the patient cannot breathe on his or her own and has no brain activity. Two doctors must declare the patient deceased. Organ donation doesn’t even become a possibility until brain death is confirmed and doctors have noted time of death.
It’s the hospital’s responsibility to notify the local organ procurement organization (OPO) when a patient dies or is close to dying. In the case of Tim Rooks, the OPO was LifeQuest, an organ procurement organization that serves Florida’s donation and transplantation community.
Should a patient be a potential candidate for donation, a representative from the OPO goes to the hospital. If the patient was a registered organ donor, this is accepted as legal consent. If the patient wasn’t registered, the OPO representative can ask next-of-kin for authorization to donate. Once donation is authorized, a medical evaluation is performed, including taking a complete medical and social history from the family. (Because all incisions are closed, organ donation will not interfere with an open-casket funeral.)
If evaluation/history confirm that donation is possible, then it’s all about matching organs/tissue with appropriate recipients.
Matching Donors And Recipients
There is a national database of every U.S. patient awaiting a transplant. Every 10 minutes another name is added to the list.
This computerized database is operated by the Organ Procurement and Transplantation Network (OPTN). In order to get on the list, a patient must be referred by their doctor and evaluated by a transplant program to see if he or she is a candidate. If determined to be a suitable candidate, his or her name is added to the OPTN waiting list.
When an OPO representative searches the database, a list is created of patients who match the donor by organ. The matching process includes multiple aspects, which are crucial to successful transplantation. These include:
Severity of patient’s medical condition
Distance between donor’s hospital and recipient’s hospital
How long patient has been waiting
During this search process, the organs of the deceased donor are maintained via life support. (The medical team that cared for the patient is replaced by the transplant surgical team.)
You’ve probably seen a movie or television show in which an organ is whisked off for transplant via plane or racing ambulance. There is definitely truth to such dramatic scenes. Certain organs can survive outside the body longer than others, but time is of the essence and can become a determining factor in which patient on the waiting list receives an available organ.
The recipient is typically already in the operating room when the transport team arrives at the hospital with the organ.
Depending on the organ in question, surgery can take anywhere from 90 minutes for a kidney transplant to four to five hours for a liver transplant. Assuming all goes well, a kidney recipient could be out of the hospital in three to seven days, while a heart or liver recipient may take a week to 10 days. Complications of any kind would, obviously, extend that time frame.
If all goes as planned, the body will accept the transplanted organ and healing begins. In an effort to avoid rejection, doctors give the recipient patient immunosuppressant medications, also known as “anti-rejection” drugs.
Because these medications can make the individual more vulnerable to illness and infections, an organ recipient—and their family—need to be vigilant against exposure to sickness and injury. Depending on the case, a recipient may need to be on medication for a long period following transplant surgery.
You don’t have to worry that by registering as an organ donor you are leaving your family with an additional bill. The donor’s family never pays any costs associated with organ/tissue recovery; those expenses are covered by the OPO.
Transplant surgery involves an array of expenses, including lab tests, transportation to and from the transplant hospital, surgery, hospitalization, rehabilitation, therapy and medication.
Although health insurance may cover some or most costs, the insured is generally responsible for all costs not covered. You’ll need to go over the details with your insurance company and then meet with the financial coordinator at the transplant center. In some cases, you may be eligible for Medicare or Medicaid to help pay for costs.
Contact Between Donor Family And Recipient
Gratitude is a natural response when someone’s life is saved or radically improved by organ donation. When a recipient wants to reach out and say thank you, they can write a letter to the family and send it to their transplant center. The letter is then passed on to the donor family, provided both donor and recipient sides have agreed to such action.
By law, the confidentiality of donors and recipients is maintained, unless both want contact.
“Right after Tim’s death, my sister wrote to two of the recipients of his organs,” recalls Terry Rooks. “The letters were sent to LifeQuest, which forwarded them on to the recipients. We did hear from them by letter and it was a positive thing.”
Not all tissue and organ donations occur because the donor has died. Approximately 6,000 living donations occur each year. Under the right conditions, living persons are able to donate:
One lobe of the liver
A lung or part of a lung
Part of the pancreas
Part of the intestines
Bone (typically after knee and hip replacements)
Bone marrow cells
Umbilical cord blood
Amnion (after childbirth)
Blood (white and red cells, platelets, serum)
Of these, blood and bone marrow can actually be donated more than once, since the body regenerates/replaces them. (The National Marrow Donor Program maintains a national registry of bone marrow donors. You can learn more at marrow.org or by calling (800) MARROW-2.)
Because there is always a level of risk involved with any major surgical procedure, a potential living donor is carefully evaluated to determine whether donation is suitable and is informed of what is involved, potential problems and any financial considerations. Even though the recipient is typically responsible for all costs related to transplant, the living donor may experience loss of wages during recovery time, for example.
Are You Registered?
Making the decision to be an organ donor is the first step; the next action is to register. You can do this online or in person at your local motor vehicle department.
To register online, just go to donatelifeflorida.org or registerme.org and complete the registration form. (You can specify which organs/tissues you would like to donate and any you want to exclude for whatever reason. You can modify this information at any time.) That’s all it takes to know you’ve chosen to give the gift of life.
You want to be sure to let your family know you’ve registered as an organ donor so they are fully aware of your decision. As next-of-kin, family members will be asked certain questions at the time of your death. Because this will be a highly emotional time for them, it can be comforting to know they’re helping carry out your final wishes.
Organ Donation By The Numbers
22: People who die each day waiting for a transplant
30,970: Transplants performed last year
120,000+: Men, women and children currently on the national transplant waiting list
8: Number of organs one person can potentially donate
95: Percent of American adults who support organ donation
48: Percent of American adults registered as organ donors
Organ Viability Timeline
Organs aren’t created equal when it comes to surviving outside the body. Here’s how long major organs remain viable, which is a significant factor in determining which patient on the waiting list receives that organ.
Heart: 4 to 6 hours
Kidney: 24 to 36 hours
Liver: 8 to 12 hours
Lung: 4 to 6 hours
Pancreas: 12 to 18 hours
Intestines: 8 to 16 hours
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