During National Donate Life Month, organ donation impacted TMC family

National Donate Life 4.jpgThe Spohn family had a special reason to celebrate this year’s National Donate Life Month – a kidney donation that has made a meaningful difference in their lives, providing great relief and renewed freedom.

When it comes to doing things together, the Spohns are a close-knit family who share every triumph and every challenge. Ed Spohn credits the support of his wife, Michelle and son, Phillip for helping him brave the extraordinary challenges of polycystic kidney disease (PKD).

The Spohns are also a part of the Tucson Medical Center family – Michelle has been a member of the TMC nursing-staff for more than 20 years, and Philip will soon be moving from transportation into patient safety.

Now in his late 50s, Ed has been coping with the disease since age 17. “They told me I’d probably have to go on dialysis in my 50s.” Unfortunately the genetic disease took grip far sooner, and dangerously enlarged Ed’s kidneys before he turned 40. In 1997, Ed received a kidney from his wife, Michelle.

Ed’s life changed and he could resume most activities. After the transplant, Ed says he felt “wonderful.” Gone was the chronic pain in his back, the swelling in his feet, the nausea, and the intense headaches and shortness of breath. Ed’s family experienced the challenges with him – and Michelle knows she did the right thing.

National Donate Life“It’s so gratifying to do something like this,” said Michelle. “It is so hard to see a loved one suffer and It made all the difference. I’d do it again if I had another to give.”

Michelle said she has not experienced any medical issues as a result of her donation, and she encourages others to donate. “I tell people to get tested for a tissue-match if they have a family member or loved one with kidney failure – it will change everything for them.”

Receiving a kidney transplant requires constant care and monitoring. While the rewards change lives, there is a risk of rejection and the recipient will need to take anti-rejection medications that have additional risks and side effects.

Unfortunately, transplant kidneys do not last as long as our own organs. Ed’s periodic blood tests revealed the transplant kidney was failing in 2013. He soon began dialysis – a process in which a machine called a hemodialyzer performs the function of the kidneys. The process is life-saving, but strenuous – often causing anemia, fluid overload, constant itching, trouble sleeping, and other taxing symptoms.

Ed received dialysis treatment three times a week, for several hours at a time. The process also involves frequent testing. “You have to adhere to a strict diet, and get fluids and blood checked all the time,” Ed said. “It was never easy, but we did what we had to do.”

Dialysis also requires frequent sessions, restricting any travel. “I missed a lot of things,” Ed stated. “I couldn’t go to so many family gatherings, like my niece’s wedding – I even missed my mother’s special birthday party when she turned 80.”

National Donate Life 3.jpgAfter a year, the Spohns also provided hemodialysis for ED at home – a very difficult task that was understandably stressful and overwhelming for the family. “We experienced a roller coaster of emotions,” Michelle said. “Ed was on the donation list and we answered every phone call with such hope.”

Those hopes came to fruition last week, when the Spohn family received the call they had been waiting for. The transplant was a success – and the Spohns are overjoyed to be sharing a triumph. Michelle attended a ceremonial flag-raising on the TMC campus last week to bring awareness to the need for organ donation.

“I’m so thankful,” Ed said, with a grateful smile. Transplant recipients can write an appreciative letter to the family of the deceased donor through the Donor Network of Arizona. Ed said he wants to take it a step further. “I really hope I get to meet them, so I can tell them how much it helps our family – I’m forever grateful.”

What’s next for the Spohns? The family will spend the next few months ensuring Ed’s body accepts the new kidney – after that, they hope to travel and celebrate Ed’s restored health. “I’m already feeling so much better!”

For further information about organ donation, visit the website for the Donor Network of Arizona.

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A perfect match: An organ donor’s personal motivation

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Barbara Lacoursiere
Donor Network of Arizona Volunteer

Tucson resident Barbara Lacoursiere understands how far the science of organ donation has come, and how its acceptance has grown over the past 60 years.  And she knows exactly what a precious gift it is to donate. 

Her influence goes back to the early 1950s when her brother Freddie lost his eyesight from diabetes.  “He became what they call a ‘guinea pig’ at the Eye Institute of Minnesota, and they ended up removing his eyes during an experimental procedure,” she said.  “When he came home, he had glass eyes in his pockets and I was so mad at him.  He said ‘Barbara, it’s ok.  I know what the blue sky looks like.  I know what the color red looks like.  Think of all those people who have never seen anything.  Maybe someday what I did will help others.’” 

In 1958, her brother Jerome, who also suffered from diabetes, needed a kidney transplant.  “The Mayo Clinic in Rochester had only done three kidney transplants at that time.  My brother was too sick for them to help him.  It was absolutely devastating for me.  I had to go home and tell my mother the news.  Jerome passed away three months and three days later,” she said.

Determined to put the pain behind her, Lacoursiere didn’t think about organ donation much – until a conversation with another brother, Michael, at a family reunion 16 years ago.  Michael also had diabetes.  “I knew he wasn’t well.  I asked him what was really going on.  He said, ‘I need a kidney.’  I looked at him and said ‘I know they’ve come a long way – so just get one.’  And he looked back at me and said, ‘You know, Barbara, you don’t just get them at Ace Hardware.  Most everybody has two kidneys, and you only need one to live a healthy life.’  I joked, ‘You can have one of mine.’”  But in reality, she wasn’t joking. 

At first, doctors were hesitant to test her to see if she was a match since she was over age 55.  She was 62, but she was healthy and strong.  She convinced them to test her.  Sure enough, she was a match, and donated a kidney to her brother in 2001.  Michael eventually passed away last August.  “He lived 10 years and 10 months with our kidney,” she said tearfully.

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The Arizona Donor Quilt

These days, Lacoursiere spends her time volunteering for the Donor Network of Arizona – educating others about the life-saving and life-changing decision they make when they decide to become an organ, tissue and cornea donor.  Lacoursiere was outside of the TMC Cafeteria in front of the Arizona Donor Quilt with TMC Clinical Educator Sue Bentley and her team – educating anyone who would listen, and signing up people who committed to saving and improving lives…long after they pass on.

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J.D. Hakes
Organ Donor

The Arizona Donor Quilt is one of 18 currently in the state.  “All of the squares were donated by the families of donors in honor of their loved one,” explained Kristi Clor, Donor Network of Arizona Hospital Donor Program Coordinator.  Each square is a remarkable tribute to a life that was lost but continued to live on. 

One of the squares is for little J.D. Hakes, who was only 2 years old; another for 17-year-old Courtney Wagner.

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Courtney Wagner
Organ Donor

For the families, creating a square is often therapeutic.  For those passing by, it’s a way to see the people who have made a difference.  “Instead of ‘my loved one passed away,’ it changes that last chapter of their life, and makes it ‘my loved one passed away but they saved some other people,’” said Clor.

For more information on the registry, click here and check the new tribute site at http://liveonaz.org.

“It would have been a horror not to have donated.” Widow’s decision brought comfort

donatelifeaz logo (2)Organ donation saves lives, tissue donation heals lives, and corneas restore sight.  The Donor Network of Arizona (DNA) is a nonprofit, 501(c)3 federally designated organ procurement organization for the state of Arizona.  Their dedicated and passionate work saves and heals the lives of Arizonans.

In honor of National Donate Life Month, we are posting some touching letters written to the DNA following a family’s decision to give life despite grieving a loved one.

Dear Hospital Staff,

When my husband died from a massive heart attack, with my father’s reminder, we approached the hospital regarding donation.  My husband, Bill, had always said that if in his death he could help someone, why not. Believing donation should be the rule, he thought someone should have to request not to be a donor. In this death, though numb in loss, I followed his desire.

Donation has been a source of comfort to me, then as it is now. By helping others to gain sight and mobility, my grief has been mingled with comfort, strength and even joy. It would have been a horror not to have donated. Every time I hear a recipient’s story, it affirms the rightness of the decision. It matters that the donation happened. It is a light into the darkness. I am proud to be a donor spouse.

Rose Whitaker
Donor Wife

For more information on the registry, click here and check the new tribute site at http://liveonaz.org.

Donate Life: How organ donation saved lives and helped grieving families heal

donatelifeaz logo (2)We are halfway through the month of April, National Donate Life Month.  The Donor Network of Arizona (DNA) has shared some touching letters they received from family members who, despite dealing with the loss of a loved one, made the decision to give life.  Organ donation saves lives, tissue donation heals lives, and corneas restore sight.

The DNA is a  nonprofit, 501(c)3 federally designated organ procurement organization for the state of Arizona.  Their dedicated and passionate work saves and heals the lives of Arizonans.

Dear Hospital Staff,

I remember getting a phone call that would change the rest of my life. It was my sister Januari telling me that my little sister Jeanne was being rushed to the hospital because she was having seizures and was unconscious. She had a brain aneurysm that ruptured. We had all the neurological tests run and she was declared to be brain dead. She was 15.

As hard as that decision was, the next one that we made was to donate her organs to those in need. Jeanne was all about living life to its fullest and giving back to others. We donated her heart, liver, pancreas, and kidneys. Her heart saved a 65 year old grandmother who runs a chili farm in New Mexico; her liver saved a 63 year old grandmother in Phoenix; her pancreas and left kidney saved a 45 year old mother of two in Glendale; and her right kidney saved a 6 year old Indian girl in southern Arizona. Of these four people that were given a second chance to live I have met three. Betty (the heart recipient). Mary (the liver recipient), and Sally (the pancreas/kidney recipient). The hardest for me to meet was Betty, but how awesome to put my head on her chest and hear my sister’s heart beating still. It is amazing to see that my sister lives on in the second chance she gave these people.

Though I am sad that my sister is gone and at such a young age, I am comforted in knowing that because of the life saving gift we decided to give she lives on, and four other families did not have to suffer the same pain and tragedy that we did in losing a loved one.

Kim, Donor Sister

Dear Hospital Staff,

When my husband’s brain aneurysm ruptured, it was the worst time of my life. But the opportunity to donate his organs gave me some semblance of meaning to the tragedy. It gave me some control when everything else was out of my control and, since he had indicated he wanted his organs to be donated, it gave me chance to satisfy his wish. And, of course, it gave the recipient the new heart he needed to watch his children grow up. I have said to people more than once that the worst thing of all would have been if Jim had been eligible for donation but the opportunity had never been given to me. That would have been devastating.

Robin Steel
Donor Wife

For more information on the registry, click here and check the new tribute site at http://liveonaz.org.

Families comforted by decision to donate loved one’s organs

donatelifeaz logo (2)During the month of April, National Donate Life Month, we will continue to publish some stories provided by the Donor Network of Arizona (DNA) to help illustrate how organ donation saves lives, tissue donation heals lives, and corneas restore sight.

The DNA is a  nonprofit, 501(c)3 federally designated organ procurement organization for the state of Arizona.  Their dedicated and passionate work saves and heals the lives of Arizonans.

Dear Hospital Staff,

Our Elizabeth was hard to resist, especially her impish smile. She was very ‘up’, a very active, outdoor type.

She died at age 26 of a cerebral aneurism. We were approached in the hospital by a representative of the organ procurement organization when brain death had been determined.

The long bones in her legs went to children with bone cancer. (Elizabeth was a very tiny person.) Her corneas were used, and her kidneys transplanted into two men in their 50’s, both family men. Her heart was “too big for a child, and too small for an adult”—so was she.

Sharing her body to give life and to enhance life was the way Elizabeth had lived her life. That her legacy continues is the only good that came out of a terrible moment in our lives.

Willie Brady
Elizabeth’s mom

Dear Hospital Staff,

I am writing to you to explain how paramount the gift of donation was to my family and how it helped comfort us during the toughest of times.

My Dad, James M. Sim, Jr. suffered a fatal heart attack. It was a sudden and unexpected death. My Dad had always been an advocate of donation and his decision to donate, and all the appropriate paperwork, had been made before his death. While this simplified the process for us, it did not diminish the effect of his decision. With his selfless decision, my Dad was able to give someone else the gift of sight. I love that someone else can now see the world through his eyes. Organ donation embodies the essence of my Dad – a kind and generous soul who loved to help others. It is a gift that enabled his spirit to continue and showcased his amazing character. Even in our grief, we were all so proud that my Dad’s death could help someone else.

Our experience only solidified what we already knew about donation, it is an important and rewarding decision. When you learn that someone else is going to benefit from your loved one’s life it is as if you are surrounded by a warm blanket – it just brings comfort. To have the assurance that a death is not in vain, that your loved one will not be forgotten, and that others will be able to understand the amazing person your loved one was – that is the true gift of organ donation. The recipient gets a new lease on life, and we were comforted by the fact that my Dad provided that chance. It’s yet another valuable memory and one last gift from my Dad.

Kelly Brown, Esq. – Donor Daughter

For more information on the registry, click here and check the new tribute site at http://liveonaz.org.

One family’s story about giving the gift of life

donatelifeaz logo (2)April is National Donate Life Month. 
DonateLifeAZ is administered by the Donor Network of Arizona (DNA), a nonprofit, 501(c)3 federally designated organ procurement organization for the state of Arizona.  DNA saves and heals the lives of Arizonans through dedicated and passionate work to provide organs to save lives, tissue to heal lives and corneas to restore sight.
During the month of April, we’ll be sharing some touching stories that have been provided by DNA.
Dear Hospital Staff,

My husband Douglas M. Bales was 46 years old when he passed away suddenly of a heart attack.

Doug had a great passion for gardening as he did for life in general. All of his family and many friends were quite saddened by his death. We want to remember the wonderful man, husband and father he was and celebrate his life today and always.

Through organ donation, a part of Doug will always live on and he will never be forgotten. I find extreme comfort in knowing that the donation of his corneas has made it possible for two people to see a new sunrise.

Jackie Bales
Donor Wife

For more information on the registry, click here and check the new tribute site at http://liveonaz.org.

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