"It's not an 'S,' on my planet it is the symbol of Hope," says the Superman character on the recent movie Man of Steel, in response to Lois Lane's question why he has an "S" on his chest.
My son Tyler has been through a whirlwind of health care chaos in the last few weeks. On August 8, he was diagnosed with Primary Sclerosing Cholangitis (PSC) and we were told the only cure is a liver transplant. My son is 18 years old and headed to college, but he was forced to take a hiatus to take care of his health. He had no choice.
Last week only 15 days after being diagnosed, Tyler was very, very sick. He was readmitted to the hospital and moved to the top of the transplant list as his blood lab results showed how sick he really was. Only 20 days after he was diagnosed with PSC, he got The Call and he received a new liver that night. So his second birthday is August 28, 2014!
|Team Tyler supporting him just hours before his transplant surgery. Yes, he really is that yellow. VERY SICK kid. #nofilter|
The new liver is his hope. He is a strong young man, but because of the generosity of a family going through an unthinkable misery, Tyler has hope for the future. He will be able to return to college in January and even move into the Delta Upsilon house! Because of the skills and confidence of his surgeons, hepatologists and nurses, he has the hope to continue to live a full and normal life! And because of the support of the literally thousands of friends and family across the nation, he knows that he will be accepted because who he is, not because of a liver transplant. Thank you all for using your abilities to support Tyler and give him HOPE! You are the true Supermen!
|Just a week after surgery, Tyler's color is nearly normal!|
Today, just a few days after his liver transplant, Tyler is working hard to eat, walk and function normally again. But he has hope and confidence that one day soon he will be a normal kid, ready to get back to school and meet people as "Tyler"--just Tyler!
You know, most people with PSC have to suffer with the symptoms for years. Tyler really had a number of weeks with severe symptoms. Most people don't even get as sick as Tyler, though. He has only had a short time to wrap his head around this whole thing, but I know with the support of family and friends he will be fine. We give thanks for the generous donor family who wanted Tyler to live. They graciously gave my son a second chance at life. They gave him just what he needed at a time that he most needed help. They gave him HOPE.
|Tyler and his sisters showing off their K-State Wildcat |
spirit during the game after surgery!
Please consider registering to be an organ donor. Go to www.organdonor.gov and talk to your family so they understand your wishes. Make sure they understand that you want to share life with another person like Tyler!
So glad Tyler is on his way to recovery! In addition to the National Registry be sure you agree to become a donor when you renew your Kansas Drivers Liscense.ReplyDelete
Either is good, both is better, but talking to your family is most important!Delete
So happy to have seen your updates. God is so good! I don't think I've ever seen someone so jaundice so fast. He looks like a highlighter in that hospital bed. What a trooper and such a strong support system.ReplyDelete
Docs were amazed how sick he got so fast too! We joked that he had a bad spray tan! Might as well laugh!Delete
What wonderful news, praying for a complete recovery. Thank you to the donor family for such a wonderful gift for a fine young man.ReplyDelete
Thanks Ellie. We are very blessed!Delete
So glad to hear that he is on the road to recovery! Life is always an interesting journey -- with roadblocks and side paths that we never expect. I believe that challenges lead to maturing perspectives and a better ability to appreciate the blessings that we are given. I know that it is hard to see past today right now, but someday he will look back on this time and recognize that it made him a stronger person --- leaving him with a higher level of compassion and empathy which will be invaluable as he makes his way through life.ReplyDelete
We continue to pray for all of you, and BELIEVE that Tyler will soon be in Manhattan working hard, having fun, and achieving that next level of greatness :)
All the best from Nebraska!
Anne, thank you for your reminder of faith! We know he will e fine eventually, but it is easy to get stuck in today's struggles.Delete
So glad to hear how well he is doing! Thinking of you and the donor family! We miss you all! The Kussmaul FamilyReplyDelete
I remember teaching your husband and all of your children---all great kids. I remember how Tyler was sick at times during his fourth grade year. What a wonderful gift he received from a special donor and their family. My blessing and prayers to both your family and to the donor's family.ReplyDelete
I continue to remember Tyler and your family in prayer and I also pray for the family who provided this great gift of life to a stranger. Praying that the healing continues to be miraculous! Thanks for sharing your good news!ReplyDelete
Good job, Tyler-you mind well. I told you to get pink and that is the finest pink cheek I've ever seen!!!ReplyDelete
A young lady in our small community passed away this week, never sick by all means very healthy, she had two heart attacks in a row and never woke up. But use was an organ donor and they harvested I think eight things they will be able to pass to some very lucky people. I thought about your son and know how wonderful it was for him that a donor was available. This ladies husband is praising God that she went in a way that they can help others but also really hurting, she leaves two young boys. Add this family to your prayer list.ReplyDelete
Oh Ellie! I will pray for her family. And I am so glad to hear they were able to donate her gifts! I hope it gives them comfort and that one day they will meet the recipients of these special gifts and rejoice their lives. Thank you for sharing. I am so sorry for the pain this gal and family endured but I do pray for peace and comfort for them all.Delete
I was looking for an up date on Tyler, not being nosy just caring. It's always nice to see answers to prayers and be able to give thanksReplyDelete
Saw the story about Tyler on the news and it's wonderful that he got a new liver. My husband has PSC also but as you know everyone is different with this disease and so far we haven't had to have a transplant. I just wanted to let you and your family, especially Tyler know that there is a group called PSC Partners Seeking a Cure. They have a facebook page that is a wonderful place for support and lots of knowledge from others with many of the same issues you had or may face in the future. They also have a conference every year and will be in Dallas in April 2015. I'm sure there are many others at the conference that would love to hear Tyler's story. If you didn't already know about this group, I hope that you will get a benefit from it as we have. If you already know about this group, then I hope that you have found a great support group.ReplyDelete
Thanks for your organ donor awareness initiative as well. So glad Tyler is doing well and pray that he continues to gain strength.
My name is Toni and I live in Kansas City. We also see the doctors at KUMed Center. That's what perked my interest up in your story and when I saw that they felt it was due to an auto-immune disease. I just wanted to give you info about the facebook support group. Thanks for reading my comment.
Toni, I have found the group and finally had the courage to share this blog post and our story with the group. Thank you so much for your support and time. Tyler is doing so well--just a couple of hiccups along the way. I am so amazed that such a short time ago, he was sooo desperately sick. He is a strong, healthy, ornery kid again! It was a very special Thanksgiving and Christmas will be special too. But of course, on my mind is the family who is missing their loved one at this holiday. My heart hurts for them. I pray for them daily and hope that they can feel it. Bless your beautiful heart and thanks sooooo much for reaching out to me.Delete
I truly hope that Tyler pulls through from that rut, and that he gets back into the world rejuvenated and strengthened. Those cascading stacks of sicknesses can be such a weight, that it can just wear you down, but you have kept him in line line with proper health treatments, and that is an important place to start with. Thanks for sharing that! I hope that Tyler is faring better these days! All the best!ReplyDelete
Aubrey Holloway @ Primary Care Associates