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Life can change so fast!
They are very confident young men. As babies, we never dressed them alike; choosing instead to dress them in specific colors so Grandma would never have to ask which baby she was holding. Eric always wore green or purple and Tyler wore red. They chose to continue wearing those colors as they went to elementary school, to help their teachers to see them as individuals and their classmates to know their names. We never had to make the tough decision facing many parents of twins to separate them in classes or keep them together. In our small town, there is only one class per grade level! But the boys thrived near each other, while honing their own personality and abilities.
This has happened very fast. We had no chance to "get ready" for his diagnosis. Looking back, he had symptoms of increasing bilirubin for months. The uncontrollable full-body itching that $100's of creams couldn't touch, the insomnia and the fatigue are all symptoms of a failing liver. But we had no idea. We saw doctors all summer who tested him for every virus and bacteria they could think of. It turns out, even if we had diagnosed it earlier, it wouldn't have changed the course of the disease. It has been working in his body for many, many years. It is probably autoimmune and we hope to learn more about the cause of all this one day. But until we do, all we know is that he has Primary Sclerosing Cholangitis and the only cure is a full liver transplant. When we told him of the diagnosis as he emerged from general anesthetic after an endoscopy called an ERCP, his first question was, "But what about my brother?"
His next question was "Will I be able to donate my organs one day?" Damnit, kid, can't you be at least a little selfish? But I guess that is what living with a twin does for you. Makes you think of other people--especially that other guy that came from the same egg.
My boys will both be fine. Eric will thrive in school this fall, with his cell phone always on, and on the alert for the call that will rush everyone to the hospital for his brother's new liver. Tyler will get over this rough patch and he will heal. We have been told that many of the symptoms will miraculously disappear within hours of the new liver being transplanted. I live for the day that my boy gets relief. He truly understands this gift and he looks forward to honoring his donor by living the best life he can! As an 18 year old boy, he has a bright future ahead and he plans to live it to the fullest! He will live a normal life with few changes and he plans to join his brother at K-State and the Delta Upsilon house in January. Until then, we will focus on his health and spreading the awareness of the need for organ donation.
You know, one of the hardest things is having people ask, "what can I do?" and there is no answer. We need nothing, just your support. So I just tell them to pray--for Tyler, for his family and for the future donor and their family. We will get through this. Bless you, my friends, for your prayers.
If you are interested in learning more about being a donor, don't wait for me to write another blog post! Check out OrganDonor.gov NOW!
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Thank you for taking the time to share this story!ReplyDelete
You're all in our thoughts and prayers.
Thanks so much, Barbara! It took me a long time to get this first post about my son's disease written. But as a blogger, I had to share the story and try to help others as well! And writing is cathartic. :)Delete
Keeping you all in my thoughts and prayers! Thank you for sharing your story! My Mom was an organ donor, and until now, I never really gave it much thought, but I will now. God Bless you all! Amy (Webb) ZornesDelete
Amy, thank you for your comments. I didn't know that your mom was a donor. Bless you all and her!! It is pretty normal for people to have not thought about it until the unthinkable happens. So we are going to try to help people get the facts about organ donation and sign up if they are moved to do so. You are all in my prayers--especially today through the rough times.Delete
My thoughts and prayers are with your son and the rest of the family. I'm actually brainstorming for a month long Organ donor awareness event on my blog and FB page this September- my husband has polycystic kidney disease and will eventually need a transplant, and possibly my boys as well. I think activism is a cathartic act in and of itself. .. I can't cure my husband or make sure my boys aren't set to travel the same road. .. but I can work to make the road better.ReplyDelete
Heather, I agree. The people signing up today won't help my son, but I want them to see the face of organ transplantation so they can see the kind of people an organ may help. I pray for your family and keep me posted on your event and I'll help promote it!Delete
I am so excited to see that Tyler celebrated his second birthday! We'll be watching KSHB tonight!Delete
Pray for your family, cows and grass.ReplyDelete
Thank you very very very much!Delete
Debbie you are so right - life changes in a moment- Prayers to Tyler , your and your family. 20 years ago my sister died at age 40 of a stroke- she was a donor- so I know somewhere out there she still continues to touch lives-- Stay StrongReplyDelete
Thank you so much for sharing! I am sorry to hear of your sister, but I love that part of her is still alive and impacting lives! Do you have any interest in knowing who received her organs/tissue? My son already knows he wants to meet the donor's family one day when the time is right. He wants them to know how he is honoring their loved one by living well! I don't yet know how that will happen, but I know he will write a letter as soon as he is able.Delete
I was taken with your story and fortitude in the face of life's uneven hand. I pray your son get's a new liver soon. You seem to be a lovely person and I envy you living on a ranch. The secret is I love cows, especially the red haired Scottish Highland Coo!!! I hope we can be friends and you will be in my prayers, Kind Regards, Charlotte aka....the old nurse!! I give the police K-9 dog handlers holy hell, when we lose a dog for no good reason, I lecture them about getting the dogs to the veterinarians more often and tell them to learn to read the blood lab reports and keep their own file on their dog, and remind them to keep the car window rolled up because we have had a few jump out into traffic, chase a deer and disappear. The boys are devastated when they lose their K-9, and that is; unbearably sad to me, so I am the oldest biggest barking nurse and they all better listen and get the dogs dental care and the main reason I started this was Vested Interest in K-9's, so that every dog will have a ballistic vest, bullets can't go through and neither can knives, so my mission is to get as many of those ballistic vests on every dog.We are nursing Koda back to service but he got shot in the leg and his handler, aka MOM, keeps us all up to date with medical and pictures and we vote for Kota to be the BEST K-9 so he can ride in a float in the parade. These dogs and their handlers are my life but I felt a new friend coming on with the son's I never had, so handsome and such a lovely life. I will do what I can or just be there for you all, if you like that idea. I don't know what a blog is, so better tell me how to get there.!! if your leg fell off, I could fix that...but this computer.....it's the bane of my existence. my friends make fun of me!!!!!! hope to hear from you.ReplyDelete
I didn't know any of those select profile names, so I clicked on anonymous....I don't want you to think that I want to be anonymous but what should I have done. all I know is Hotmail and what is a URLReplyDelete
ANONYMOUS IS MEEEEE. GrandmaInTheDesert@hotmail.comReplyDelete
thank you so much, GrandmaInTheDesert! I can tell from your comments that you are a very energetic person and that you get things DONE! I appreciate your support and prayers!Delete
Debbie - I just stopped to say a prayer for Tyler and for all of you who wait with him. He will go on my prayer list, too. I can't imagine. When my mother-in-law died unexpectedly 18 years ago, we were able to donate some of her organs, so I know how meaningful it will be for the family who will help Tyler to have the knowledge that their loved one made a difference, even in death. Blessings to Eric, too, as he begins this next step of his journey. Even though you've encouraged independence, it's got to be extra tough on him. Hugs and prayers from another Kansas farm wife and mom.ReplyDelete
I know you are right, Kim. It is tough on Eric especially and his other siblings as well. They try not to text or call every day and ask the same thing, "How's Tyler" because I rarely have new news. But we are hanging in there and doing our best to wait patiently and prayerfully. Your support means so much--I am deeply touched by the expressions of love and support we have received...not just in our small town where we live, but in the small town community we have built on Social Media. Thank you thank you thank you!Delete
Prayer is very powerful, praying for health and a donor soon..ReplyDelete
Thank you Ellie! I agree. Prayer is very powerful.Delete
You have a most powerful coach on your team with all the prayers. It was said "If you want to see and know where God lives come out to Americas forms and ranches," by Dave Nichols of Bridgewater, Iowa. Will be remembering your family.
You are exactly right, Dave! We know that God is watching over us and with us every step of the way--and we feel Him working through our friends and family. Sending us messages, cards, food and prayers--we are wrapped in God's love!Delete
Thanks for your prayers.
I will be praying for you all as Tyler travels this challenging road. God is faithful.ReplyDelete
Thank you! I appreciate all prayers!Delete
I'm a 56-year-old south Georgia girl and I received my liver transplant in January 2014 after being on the list for 6 short months. Everything went very smoothly and I have recovered wonderfully and know it was all in God's hands. I never dreaded the operation nor the outcome. I had a peace in my heart about everything... a peace that only the Lord can give you. Praying for your sweet young man and family as you travel this journey together.ReplyDelete
I thought I replied to this comment earlier, because I was so happy to hear of your success! Thank you for sharing your experience-it gave me Hope!Delete
I admire your strength and your courage and I thank you for sharing your story. I started my nursing career in pediatric surgery and on my ward we had the liver transplant patients. It's truly a remarkable surgery and you and your family are in my prayers.ReplyDelete
Thanks so much Sarah. It is a remarkable surgery and the people who have contributed to Tyler's care have been amazing!Delete
IT IS SURPRISING HOW FAR YOUR FAITH IN GOD AND ADRENALINE WILL GET YOU. YOUR ADERNALINE MIGHT WEAR OUT, BUT KEEP YOUR FAITH IN GOD. IT GOT OUR FAMILY THROUGH SOME PRETTY TOUGH TIMES. OUR PRAYERS WILL CONTINUE FOR YOU AND YOUR FAMILY. "JUST A FRIEND, PLAIN AND SIMPLE"ReplyDelete
Today is definitely a faith in God day--day 1 post transplant is rough but what a gift!!!Delete
I don't know your family directly but I know Frank and Jan and have been following Tyler's progress. My sister and I are both now organ donors as a result! Wonderful to see a family with such faith!ReplyDelete
Thank you thank you thank you!!Delete