The Swanson Family

Our twin boys, Luke and Jake, became the newest members of “Team Swanson” in October 2008. At birth, they were the picture of good health. But it soon became apparent that something wasn’t right when the slightly yellow, almost jaundiced appearance, associated with newborns lingered.

Just three months later, we received devastating news from the doctors at Children’s Memorial Hospital. Luke and Jake both had a rare disease called biliary atresia, a condition in which the liver’s bile ducts develop improperly. The doctors at Children’s Memorial were as shocked as my husband and me since they were unaware of a case of twins both being diagnosed with this condition.

The exact cause of biliary atresia is unknown, but experts believe that during the third trimester of pregnancy something causes the fetus’ liver to attack itself. The build-up of bile causes irreversible cirrhosis of the liver. The only cure for my boys would be liver transplants. Both were place on the national organ transplant waiting List in fall 2009. Our family’s wait for two healthy boys was under way.

Waiting for a new liver.

On August 11 of this year, after almost two years of waiting, we were blessed with a call from the transplant team at Children’s Memorial. They had amazing news—there was a match for Jake. He received his new liver on August 12 and has experienced an amazing recovery. He is a new kid, full of energy and life!

As a family, we now find ourselves in an unusual and uncomfortable place.  We are excited and relieved for Jake, but we still feel very anxious and concerned for Luke as he continues to wait for a transplant. We are hopeful for Luke and his future and anticipate the day he will be able to run, laugh and play like his brother Jake.

As a family, we often reflect back on our journey. One of the first thoughts we had when we saw Jake in recovery was that donor family was in the opposite situation that we were in. They were grieving while we were joyous for Jake and his future. My eyes fill with tears when thinking about them. They decided, in their darkest moment, to help Jake and others like him during their unspeakable tragedy. We are forever grateful to this anonymous family for their gift of life.

The Swanson boys on the way to the Bears game.

This September, our friends at Children’s Memorial and Donate Life Illinois asked Team Swanson to join them at the Bears versus Packers game at Soldier Field. Of course, we said “yes” and were excited to go.  The smiles on all of our boys’ faces that day were priceless as we walked on the field. It was an encouraging reminder of all of the wonderful memories that are yet to come—memories made possible by offering the amazing gift of life through organ and tissue donation.

The boys at Soldier Field.

- Robyn Swanson

Register your decision to save lives by becoming an organ and tissue donor at DonateLifeIllinois.org!

Dan and his wife Nancy

I was one of the lucky ones.

In 2001, I lost consciousness on a commercial flight from Denver to Chicago. My first thought was that I had a severe case of the flu. Upon landing in Chicago, I was taken to the hospital and immediately admitted. After two days of testing, doctors found that I was anemic from bleeding stomach ulcers caused by aspirin, which I had used regularly since turning 50.

They also found something else that was both urgent and potentially life-threatening. Tests revealed that I was experiencing elevated liver profiles caused by cirrhosis of the liver. I was fortunate because they found the issue early while I still had a high-functioning liver. However, my team of doctors and I were determined to limit any further damage.

We decided that the best course of action was to schedule me for an abdominal scan every six months to check for liver cancer. In 2008, the liver team found a small, potentially cancerous lesion on my liver. After three biopsies done over several months, I was informed on September 9, 2009, that I had liver cancer and would need a liver transplant to stay alive. Within days, I was on the national transplant waiting list.

Dan enjoying his second chance at life.

My situation forced my family and me to learn about life on the transplant waiting list. My wife Nancy, my two grown daughters and I researched my disease and treatment. We also reached out to friends who had received transplants and those like me who were waiting. After months of diligent research, I felt I was one of the most informed patients on the waiting list and that everything would be all right.

The next 18 months were a combination of waiting and preparing. I was called to the hospital three times and prepared for surgery. Each time I was told the liver was not a good match. On February 28 of this year, I received a call I will never forget. There was another potential match. Luckily, this call was not a false alarm—I received a new liver and a new lease on life.

Dan at work shortly after his transplant.

My recovery went quickly, and I was back at work after 30 days and back into my normal, active routine after only 90 days. I was blessed with the support of a wonderful family and a talented transplant team that was fully dedicated to saving my life. But none of this would have happened, and I would still be waiting if my donor hadn’t decided to register his or her decision to give life through organ donation. Someone unselfishly decided that he or she wanted to save someone’s life by registering as an organ and tissue donor. This was truly a gift of life that I will treasure forever. My family is eternally grateful to the family—and the donor—that decided to give me a second chance at life.

Now that I’ve had a chance to reflect, I’m amazed at how little my family and I thought about organ and tissue donation before I learned that I would need a new liver. I now realize how important it is to give the gift of life through donation. After reading my story, I hope you do, too. Please take a few moments to learn more about donation and to register your decision to be an organ and tissue donor at DonateLifeIllinois.org.

- Dan D.

To learn more about organ and tissue donation and to register your decision to donate life, go to DonateLifeIllinois.org.  For more information on Dan and his transplant, visit Dan’s Liver Blog.

Mia’s Story (submitted by Trista Royer)

My daughter, Mia, was born with gastroschisis.  Gastroschisis is a birth defect that causes the intestines to grow on the outside of the body.  We were told that Mia’s birth defect would be a quick fix with surgery.  Unfortunately, we would later learn that Mia needed a transplant.

Mia had her first surgery to correct her birth defect at just 31 weeks.  During this surgery, doctors discovered that Mia only had 12 cm of viable intestine. Doctors then diagnosed her with a condition known as severe short bowel syndrome. This left Mia unable to ingest any food (not even an ounce of formula).

Mia was taken to Children’s Memorial Hospital in Chicago for bowel rehabilitation.  Doctors worked tirelessly to help Mia for more than a month with little to no improvement.  She was placed on total parenteral nutrition through a central line in her chest because of her inability to eat. After witnessing months of corrective surgeries, I was told that Mia’s final hope was a small intestine transplant. On February 14, 2008, when Mia was just six months old, she was placed on the national transplant waiting list for a small intestine.

Mia

Throughout the next year, Mia went through numerous central and PICC lines and many infections trying to keep her body well without food.  On February 4, 2009, almost a year after being listed, we received a call from Children’s Memorial Hospital’s organ procurement team.  They had great news—a potential donor.

We were thrilled at this news but also nervous.  We drove Mia to Children’s Memorial where Mia went through dozens of preliminary tests to ensure that the donor organ was a match for her.  She was taken to surgery around 10:30 that night, and her new intestine was transplanted around 1 a.m. on February 5.

Mia had a two-month recovery at Children’s Memorial and is doing amazingly well today.  She is two years post-transplant and living the life of a healthy three-year-old. Her doctors told us that she is the “poster child” for bowel transplants.

The Royer Family (Mia, Ben, and Trista)

As our story illustrates, organ donation is so very important.  Without this gift of life from our donor family, my daughter would be living on borrowed time or may not be living at all.  My husband and I are both registered organ/tissue donors. If anything ever happened to either of us, we wouldn’t think twice about donating to families that are in desperate need.  We understand that the pain of losing a loved one is severe, but we also have first-hand knowledge of the impact a single organ donor can have on people’s lives. We get to see smiling proof of the gift of life through donation every single day.

For more information about Mia and the Royer family, go to www.miaroyer.net.

To register your decision to be an organ and tissue donor in 30 seconds or less, visit DonateLifeIllinois.org.

I started to sing, “row, row, row your boat gently down the stream. Merrily, merrily, merrily, merrily, life is but a dream.” But when I woke up, I woke up to dialysis. You name it, I experienced every dialysis treatment there was. I almost lost my time on this earth fighting for 8 1/2 years, trying to stay alive to see my two boys. Depression, medicine denial fears, facing death and no support, it almost killed me but I didn’t give up. I took the punches and the bruises.

I did not understand this chronic illness that took me so fast and I knew that no one else would ever understand me. I have learned that when I acknowledge fear and share it with others, I can be empowering and help others while empowering myself. Maybe one day I can be that international motivational speaker that I say I am.

Being sick is very difficult but I adapted to it. There are times that I still feel happy even when I am feeling sick.

In January of 1999, I received a call (about an available kidney.) It was my ticket. Freedom had come but on the other hand, someone just lost a loved one.

If you receive (or received) a donation, be a good steward to your organ. The powerful immunosuppressive medications that are taken post-transplant may cause depression and can be very uncomfortable at times and for that reason, support is needed. I have learned through my second chance at life that sometimes we only get one chance, sometimes we get two chances and other times we get chances after chances.

The goal of my second chance at life is to support as many people as I can, especially those that are battling with organ failure and transplantation. It is a fight that we must keep fighting until god says well done, good and faithful servant.

Dedicated to two of my friends Megan and Danyale who recently lost their battle to organ failure.

-Lisa Givens

- Nick

My brother was an engineer in Indianapolis who helped design chemical plants across the world. He was 42 when he went to the emergency room with severe abdominal pain.

David was diagnosed a couple of days later with liver cancer which soon spread to other organs throughout his body.  On his 43rd birthday, he had a liver, stomach, pancreas and small intestine transplant during a 15-hour surgery. Though he was in and out of the hospital before dying in February 2008, the transplanted organs he received from a man in another state gave him about a year more with his three young children.

You never think it can happen to you or someone you love, but it did my brother. I was not signed up to be an organ donor until his diagnosis. I am now!

-Amy C., Mattoon

On August 20, 2009, he was officially put on the transplant list for new intestines which came in on March 11, 2010. It will soon be 15 weeks post transplant. Dylan still gets hospitalized for infections but we are very grateful to be in good hands where doctors and nurses do everything to combat rejection and protect the new intestines from infection. We are also very grateful to the Ronald McDonald House in Chicago as well as the Kohl’s House for transplant children and their families. Last but not least we are very grateful to the donor’s family for such a loving gift.

Diane’s father’s and sister’s organs were donated upon their deaths so we have always been a strong proponent of donating Life.

Start saving lives today by joining the Illinois Organ/Tissue Donor Registry!

-Dave & Diane

Lives are saved everyday because of organ donations and it’s important to On Your Mark to reach out to others in hope of getting people more involved in organ donation.  Therefore, On Your Mark is asking for donations as well as encouraging others to become organ donors. You never know who’s life may be saved because of organ donation. We’ve organized the Pioneer Trail Run, located in Palos, IL that will take place September 26th and would like anyone interested  to join us. All proceeds will benefit Gift of Hope. Visit http://taachicago.com/ for more information regarding race details.

-Emily, On Your Mark

Pat with his daughter and living donor Annette

Oct 12 is my new birthday thanks to my family and friends with a special thanks to my daughter.

I had been monitoring my liver condition for several years, which was determined to be related to my autoimmune system causing a progression of cirrhosis of the liver. At age 63 I was detected with a severe case of cirrhosis of the liver, but because my belief that I could beat this, I maintained daily exercise routine which allowed me to hold off the outcome that a liver transplant was my only option.

As a result of my better than average health condition, I was assigned a meld number in the hundreds to be considered for a liver transplant. This meld number is based on several factors that are unique to each individual’s situation. At this point my chances of receiving a liver started to dwindling.

My family underwent great amounts of stress and emotions but conditioned to show their love and support. This kept me in a very positive mindset and fired-up to continue to be positive and believe that something, somehow would happen.

This is when my family took the ultimate step and offered a liver transplant. My son and wife were not the correct blood type but, by some miracle, my daughter (35-years-old) was a 100% match and offered to donate part of her liver. After much distress and concerns I had for her well being, I accepted her offer. In October 2009 we proceeded with the living transplant operation which appeared to be my final option. I can’t begin to express my thoughts in words for this sign of love and dedication to helping someone continue their life, coupled with the support of my family and friends. There was no way that I would have been able to survive for the past year, enjoying my family and friends more than ever. So my story ends with “they lived happily ever after.”

Thank you, Annette.

-Pat

I want to be able to give life at the end when my time comes because I know just as easily that I could be the one needing a transplant someday. I want to be the hope for somebody who needs a transplant someday. I know it might sound silly that a television show inspired me to do this but really I just want to help others.

Don’t wait until the next Three Rivers episode to register, join the Illinois Organ/Tissue Donor Registry today!

-Audriana
Crystal Lake, Illinois

Click here to view Gail’s display.

Check out the great article on Gail written by Steve Stout at The Times.

Visit your local Driver’s Facility to view other displays within this project, and while you’re there don’t forget to join the Illinois’ Organ/Tissue Donor Registry!

-Joslyn

-Nick

To me, being an organ donor isn’t a choice. Being an organ donor is a gift I can give when I can’t give anything else. When I met my husband he was on dialysis, for the second time in his life. He suffered kidney failure when he was 29. He was too young to be dealing with a lifetime of illness. He was on dialysis for 3 years when he received the gift of life from a donor and received a transplant. That transplant lasted for 5 years until his body rejected it and he found himself being kept alive again by dialysis. I met him during this round of dialysis. He and I endured this lifestyle for 4 years before we received the call that there was another kidney for him.

The first call from the transplant coordinator resulted in a definite match, but there were a few other people ahead of him on the list that also matched. We waited again for the next phone call to come in. About a month or so later it did. As we were waiting to hear if the kidney was a match or not, we packed our bags and were ready to go. Finally, after a grueling 8 hours, we got the phone call. Again, good and bad news. It was a match and would have been his kidney, but the donor family had some disagreements and decided at the last minute NOT to donate the organs. After many tears shed, he went back to dialysis again the next day. We would just have to wait until there was another available kidney.

September 22, 2004 my husband finally received the life saving transplant that would get him off of dialysis once again. After living through this experience of seeing how important organ donors are, seeing someone I love so much having to deal with dialysis, diets, and fluid restrictions like he did, I do not view being an organ donor as a choice. It is something I have to do. I am grateful that the State of Illinois has first person consent registry so nobody has to go through the same disappointing heartache that we did, knowing there was an available organ for my husband just to have the family go against the donors wishes. My husband still lives with some limitations, but considering his life now compared to being on dialysis, this is what life is all about. I see color in his skin again and a smile on his face. I could never be more grateful to the person that chose to save other people’s lives when his own couldn’t be.