Health & Medical Resources Guide
Herald Journal Health & Medical Resources Guide
published July 2011
Organ donors are real-life heroes
By Linda Scherer, Staff Writer
Organ donor stories of courage and sacrifice usually don’t make headlines on the evening news or in the newspaper, but donors deserve to be recognized as heroes.
It’s through their generous gifts, that thousands of people each year are given a second chance at life.
Last year alone, according to the US Department of Health and Human Services, organ donors made more than 28,000 transplants possible. Another one million people received cornea and other tissue transplants that helped them recover from trauma, bone damage, spinal injuries, burns, hearing impairment and vision loss.
It isn’t necessary to search far and wide to find these generous people. One of them might be a neighbor.
John and Julie Schlueter of Winsted donated their daughter Missy’s organs, after she died at the age of 10, from what doctors later determined to be an arteriovenous malformation an abnormality of the blood vessels in the brain, which was present at birth.
“This was 19 years ago and we didn’t know much about organ donations,” John said. “I just thought it was doing the right thing. Afterward, I think the fact that we did that was what kept Julie sane.”
Being an organ donor wasn’t something that Julie had really considered before. Actually, she had asked John to remove his name from the organ donor registry when they were first married because it upset her to think about it.
But at the time of her daughter’s death, for Julie, donating Missy’s organs was an extension of Missy, who had always gone out of her way to show kindness and compassion to others.
“It was something I could grab on to,” Julie said.
Even after all these years, the couple recalled the heartache of that day, Aug. 20, 1992, and how quickly a regular work day changed into unexpected tragedy.
“It was nine days before her 11th birthday,” John said.
The parents had been at work, and Missy was at home with her two older brothers, Chris, 13, and Brad, 12, who called Julie around noon to tell her that Missy was complaining of a headache and was vomiting.
Julie told the boys to call an ambulance and when she arrived home, she found the ambulance there and her daughter in a coma.
Missy was taken to Ridgeview Medical Center in Waconia, and a helicopter later flew her to Hennepin County Medical Center.
She underwent emergency surgery, which was successful, Julie said. When doctors removed the clot, it was the size of a small grapefruit. Blood flow to the brain, however, had been cut off too long and at 5:15 p.m., Aug. 21, Missy was declared brain dead.
“There are no words to describe someone being in that position,” Julie said. “I was thinking if we could save someone else from going through this, then let’s do it.”
Four people were recipients of Missy’s organs.
Missy’s liver and one kidney went to a man who, four years later, won a silver medal in the Summer Olympics in Atlanta; he sent the medal to the Schlueters to thank them for enabling him to live. Two toddlers, one from Italy and the other from Colorado, received Missy’s heart valves; and an Iowa woman, who at the time was 47, received her other kidney and is still doing well to-date.
“Knowing that Missy’s life goes on in others and is giving them more days with their families is so rewarding. Missy is truly a hero to us and to them,” Julie said.
The Schlueters continue to talk about their experience and donor awareness at church groups, schools, county fairs, and to medical staff.
“It helps us when we help others,” Julie said. “The more you can do for others, the better you feel.”
Today, John, Julie, and Missy’s brothers are listed on the organ donor registry, as well as many other members of their family.
A living donor transplant
Daryn and Melanie (Otto) Hoof of Lester Prairie experienced a different type of organ transplant, called a living donor liver transplant, which took place Jan. 18, of this year.
Although it is uncommon for a husband and wife to be a match for an organ transplant, the Hoofs qualified.
“Going through this process was the most difficult thing Daryn and I have ever done,” Melanie said. “But seeing the end result and how good Daryn is doing now makes the recovery period not seem so bad.”
Four years before the couple married in 2006, Daryn was diagnosed with two autoimmune diseases, ulcerative colitis (inflammation of the large intestine) and primary sclerosing cholangitis (inflammation of the bile ducts that leads to scar formation and narrowing of the ducts over time).
Daryn was treated with several different medications to try to manage his colitis, but the medications were not successful.
In the fall of 2004, he had his colon removed and replaced with an ileostomy. After the surgery, he was cured of ulcerative colitis, but his body began to attack his liver.
Over the past six years, Daryn has been hospitalized several times to try to repair his liver, but in 2009, his name was added to the liver donor transplant list.
“Unfortunately, there are more people waiting on the list than there are available livers,” Melanie said.
In September 2010, Melanie had her first interview with a nurse coordinator to answer questions about her medical history and to get a better understanding of what is involved with donating a portion of her liver.
At that time, the transplant team reviewed the results and determined, based on her height, that her liver was most likely not large enough to be used, and wanted to seek other potential candidates.
When none of the other candidates had compatible blood types, were too short, or had other health concerns the transplant team refocused on Melanie.
In November, she was contacted by the Mayo Clinic to have some lab work done, and a scan was done of her liver.
“At Mayo they will not resection more than 70 percent of a living donor’s liver,” Melanie said. “The exam showed that I would need 69 percent of my liver to meet Daryn’s needs.”
In December, she was asked to come to Mayo Clinic for a week to do a comprehensive evaluation, which included additional blood tests, a liver ultrasound, x-rays of the chest and abdomen, heart and lung functioning exams, and urine tests. None of the exams were painful, according to Melanie.
“Mayo made sure I was very educated about living donor transplants and made sure this is something I truly wanted to do and that I was not being influenced or pressured by others,” Melanie said.
The risks are the same as any risks that apply to major surgeries including infection, blood clots, and bleeding. In addition, 25 percent of patients who donate a portion of their liver experience short-term complications related to bile leaks and/or abnormal liver function tests. Long-term affects are minimal. There is also a .05 to 1 percent risk of death.
Jan 4, Melanie was told she was a match for Daryn, and surgery was set for Jan. 18.
Following the surgery, Melanie was hospitalized for seven days, and Daryn was hospitalized for nine days.
Daryn was required to stay in the Rochester area for a total of 28 days after surgery. He had daily doctor visits and labs for the first 28 days.
Melanie was required to stay in the Rochester area for 10 days after surgery.
“We were both able to return to work after eight weeks,” Melanie said. “It was tough being back at work at first, but each day, we got stronger and stronger, and the discomfort became less and less.”
Daryn did have a mild acute rejection the week after surgery and it continued for a couple of weeks. The doctors said rejection is common for someone his age with a living donor transplant. The rejection was controlled by high doses of steroid treatments.
Today, the couple is doing great.
“Being able to donate part of my liver to Daryn is one of the most rewarding things I have ever done,” Melanie said. “Words cannot describe how it feels to see how healthy Daryn is again and to know that I was able to make such a difference in his life.”
Daryn calls Melanie the most loving, caring person he knows.
“She is very unselfish and courageous for what she has done,” Daryn said. “It means everything to me and our family. Not only has she given us two beautiful kids, she also went above and beyond and risked her life for me by giving me a part of her liver. We already had a special bond for life. Now, we have an even stronger special bond. I think about Melanie every day, how special she is, and what she has endured for me. I pray to God and thank him for sending me such an angel in my life. I will love her forever.”
Let loved ones know your wishes
Lynda Jensen, previous editor of the Herald Journal and Enterprise Dispatch newspapers, died June 15, 2010 at Hennepin County Medical Center in Minneapolis.
Lynda’s death resulted from an accidental fall at home a few weeks earlier, leading to a tear in the artery of her c-spine, resulting in bleeding in her brain and intracranial pressure. Due to the specific location of the bleeding, her condition was inoperable.
Her husband, Brian Jensen, of Dassel, said she had registered to become an organ donor by enrolling in the state’s donor registry when she first got her driver’s license.
“I believe it was a desire of hers that if something ever happened, she would give somebody else a chance at life,” Brian said.
Brian and Lynda had talked briefly about her being an organ donor before her death. He also admits he wasn’t happy about her indicating that she was an organ donor on her driver’s license.
“It was weird that I was found in this position because this was always a topic of interest to me. It always seemed like special interest groups were putting the cart in front of the horse and were more interested in harvesting the organs than seeing that people had a real chance to live,” Brian said.
“I would have made sure her (Lynda’s) wishes were heard, but on her driver’s license I felt that I couldn’t protect her as fully as I could, because the decision was given to someone else,” he added.
Following the donor process with Lynda, Brian said he was more comfortable about the donor procedure because he observed how the medical team exhausted all possible life-saving efforts before determining Lynda was brain dead.
Patients who are brain dead have no brain activity and cannot breathe on their own. Brain death is not a coma. Brain death is death, according to the US Department of Health & Human Services.
Brian talked to their three children, Latrice, Bryce, and Brianna, throughout the process.
Latrice said the most difficult part for her was to think about losing her mother and having to agree to share her mother’s organs in such a short time.
However, Lynda’s wishes were fulfilled and the Jensen family received a letter from LifeSource telling the family that because of Lynda’s generosity, three people received a better quality of life.
A 44-year-old man from Minnesota received the double gift of Lynda’s right kidney and liver.
He is single and works in the grain industry. He suffered from chronic liver and kidney disease and had been waiting since 2008 for a matching organ donor. His surgery was successful and his family sent a message of sincere thanks.
Also, a 38-year-old Minnesota man received the double gift of Lynda’s left kidney and pancreas. This recipient is married and has two young children. He is employed as an electrician. His doctor states that he is doing well following his transplant and has great function in both organs.
A 56-year-old Minnesota woman received the gift of Lynda’s lungs. She is single and works in the grocery industry. She had been waiting since 2009 because of a progressive disease that caused an obstruction of her airflow and made breathing very difficult. The transplant center indicates that she is doing well following her surgery and is “thrilled to be able to breathe easily and overwhelmed with gratitude.”
Lynda also gave the gift of donated tissue, which can be saved and used up to five years after the tissue has been taken. Her heart, as well, was donated so that her heart valves may be used in the future to replace damaged heart valves in patients who suffer from congenital heart defects.
How to become a donor
Each day 77 people receive organ transplants, according to the US Department of Health & Human Services. However, 19 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
People who want to become organ donors should:
• designate their decision on their driver’s license;
• tell their family about their donation decision;
• tell their physician, faith leader, and friends; and
• include donation in their advance directives, will, and living will.