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Haley grew up on Big Long Lake in Northeast Indiana and graduated from Prairie Heights High School in 2007. She attended Indiana University Bloomington and after graduation began her graphic design career in Indianapolis. She enjoys hanging out with her friends, exploring the outdoors, running and visiting Big Long Lake in summer.
Over the past several months another blood clot in her liver has caused her condition to deteriorate. She is in complete intestinal failure and is dependent on TPN (Total Parenteral Nutrition) administered through a vein in her arm for hydration and nourishment. Haley is no longer able to work or take part in activities she enjoys. She hopes that post-transplant she will be able to get back to the activities she loves and return to work.
Even with insurance, Haley will have many uninsured transplant-related expenses such as: co-pays and deductibles, doctor visits, travel and temporary relocation housing for several months to be near IU Medical Center and the costly immunosuppressant medications that she will need to take for the rest of her life.
To help with the financial burden of Haley’s uninsured expenses, a fundraising campaign in her honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible, are held by HelpHOPELive in the Great Lakes Multivisceral Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a donation today and click the DONATE NOW button.
You can also go to Haley’s HelpHOPELive campaign page and share her page on Facebook, Twitter, Instagram and other social media sites by clicking the “share” buttons. Please consider emailing this link to your family and other contacts — anything to help get the word out!
Thank you for your prayers, support and generosity. Keep an eye on this page because we will be planning some fundraising events soon and posting updates regularly.
Gratefully,
Team Haley
Hi friends!
For those who haven't heard, Haley was released from the hospital on October 9th and we could not be more excited. She is living in a hotel near the hospital and will stay there for a few weeks until she signs a new lease in downtown Indy.
She's been doing very well--growing stronger everyday. She attends physical therapy 3 times each week, which has helped to regain her strength and stamina. She also visits the hospital 2 times each week for labs and checkups with her surgeons.
In terms of nutrition, Haley is back to a regular diet--eating everything from Doritos, to grapes, to chicken-pot-pie. She's finally stopped losing weight, and is hoping regain some in the coming weeks.
Thanks again for all the support--the many well-wishes and prayers have worked.
XOXO,
Team Haley
The last couple of weeks have been filled with ups and downs in regards to Haley's recovery. Since Haley's transplant surgery, she has had to undergo a couple of additional surgeries. The main issue post-surgery has been dealing with her blood disease and finding that fine line between how thin of blood is too thin, and how thick is too thick. In the two post-transplant surgeries Haley has undergone, the doctors have had to remove two rather large hematomas that had developed due to slow seeping blood into her abdominal area. Most recently, Haley has developed several small blood clots (right arm and lungs) due to her blood being too thick after it was decided to reduce her blood thinners after her last hematoma was removed. Haley's blood has been thinned once again and the clots should be dissolved naturally with time. We are confident in the doctors here and know they will get this delicate balance worked out. We were told that there would undoubtedly be bumps along the way to recovery, and we are hoping that this is the last of them. The important thing is that the transplanted organs are functioning, and her blood numbers look good. Haley is on the right trajectory and her spirits remain strong. She is going above and beyond doing all she can do to ensure she has a successful recovery ( and to no ones surprise she is a nurse favorite). Please continue to keep Haley and her family in your thoughts and prayers. We appreciate all of your support and letters of encouragement! Here's to getting Haley out of the hospital and on the way to this being a memory!
-Team Haley
Most of you have heard the surgery went even better than expected. The donor organs were exceptionally healthy, much less blood was lost than anticipated and the team was finished within 6 hours. We could not have hoped for a smoother surgery.
It hasn't hit me yet, even 5 days later, that I just had a multivisceral transplant. But it is very real to me that another family is suffering a tragedy right now and that has given me a second chance at a healthy life. I hope I get the opportunity someday to tell them how grateful I am.
I am so excited to finally be on a road to recovery. I would say my pain is severe, but I just keep thinking about everything I want to be able to do with my life and suddenly the pain seems futile.
Thanks so much to my family, my friends and a special shout out to Zach. I hands down have more support than any others I've watched go through this over the past year. I love you, and I couldn't do it without you. ❤
- Haley Jay
GOOD NEWS UPDATE! Haley received a call from the hospital about a potential donor on Saturday, August 15th at around 3pm. She was asked to be at the hospital by 4:30pm to be prepped for surgery. Twenty-eight long hours later (the organ procurement team experienced several delays), Haley finally got word that surgery would take place. Hallelujah!
Surgery began at around 11:30pm and was expected to take 8-12 hours. However, the surgery was hours shorter than expected as it went very smoothly with no complications. In the end, it was well worth the wait and the previous false alarms. Third time's a charm!
Haley began to wake up very early on Tuesday, August 18th. She's still groggy and has trouble talking above a whisper, but that hasn't stopped her from scribbling notes, wiggling her toes and taking selfies. Her numbers are strong and her team believes that she's doing very well. Thank you to all for the outpouring of love that Haley and our family has received! Can't tell you how much we appreciate every bit of it.
XOXO,
Team Haley
This one just wasn't meant to be. While I'm glad the surgeons will only accept pristine organs I was pretty disappointed to be sent home. Thanks for all the prayers yesterday, fingers crossed for a second chance soon x
Haley
Got a call this morning at 7:18 am! :D I am at the hospital getting prepped, but it could still be another 6-10 hours before we know if it's a go. Keep you all posted!
To the anonymous contributors,
I wish I could thank you each personally and individually as I have the others. I'm so thankful for the kindness inside each and every one of you. My family and I are very appreciative of your donations and they will certainly help me in the practical sense. But perhaps even more than that, knowing I have all of your support gives me strength and fortitude I will drawn on to pull through the challenges that lie ahead.
As I've told the others, I'm so ready to do this thing and start chugga luggin down the road to recovery. And when I get there I'll take every opportunity to return the favor and give back in any way I can :)
My sincere thanks,
Haley
Hi there! Thank you for visiting my page. I’m grateful for every dollar and share on social media! I wanted to take this opportunity to advocate a couple of things….
Please register in your state to be an organ donor! Every donor can save up to eight lives. There are 122,725 people waiting for life-saving transplants RIGHT NOW:
www.organdonor.gov/becomingdonor/stateregistries.html
If you have any apprehensions about becoming an organ donor these mythbusting links will put your mind to rest:
www.unos.org/donation/facts/
To learn more about my underlying blood disease, Myeloproliferative Disorder, take a couple of minutes to visit the link below. MPD (or MPN) is an umbrella term for a variety of neoplasms that have a long way to go in research for prevention and a cure. The Myeloproliferative Neoplasm Research Foundation is founded by patients and funds research grants and educational programs.
www.mpnresearchfoundation.org
With Gratitude,
Haley
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I know we have never met, but I started doing some temp work at Williams Randall soon after you left. I have seen the work you did while you were there and I can honestly say that I am in no way replacing you. You are incredibly talented and I hope you can get back to work soon. I hope you know how much everyone at work is pulling for you to get better. I hope to meet you someday.
Tom Missler
Just a note of encouragement for a very special niece. We think of you often and pray for medical situation to show great improvement and for your comfort level to improve along with that.
Aunt Marilyn and Uncle Dave
I've been wondering how you're doing & hoping you're doing better!
I think of you often!
Debbie Tyler, Angola
Just checking in on you! Keep up the good work, Haley and family. Centenary United Methodist Church in Terre Haute has you on our prayer list.
Gail Hayes
So sorry to hear about the blood complication, but you are in good hands & I'm sure the experts will have it solved soon. Keep fighting. Keep your positive attitude. Keep your beautiful smile!
And no, you don't know me. And I only know you from reading The Herald Republican. But I certainly wish you the very best.
P.S. Zack seems like a real "keeper"!
Debbie Tyler, Angola
Great News Haley!
Rest well. Hope to see you again in Bloomington!
Daniel McDeavitt (Spring 2011!)
Haley,
Loving the updates from your Dad and the pictures of you are even better! Our church family continues to pray for you and for your family.
Aunt Marilyn & Uncle Dave
That was to be Mike & Deb Arnold on that last post!! Crazy computers
Mike & Deb Arnold
We love you Haley!!!! So happy things went so well!!!!
Mike &
I hope you have good news. I am trying to reach you, Haley!!! Prayers and good hopes,
Jennifer Decker KPC Media Group
Haley,
Talked to your Dad late this afternoon. You keep those fingers crossed and we'll keep those prayers coming.
Aunt Marilyn and Uncle Dave
Haley...
You are in our prayers! Not sure if you remember me but we lived in Hillsboro together and my daughter Jami was friends with the twins. My husband Brian and I are friends with your parents too. You are a beautiful, strong woman. Never loose hope and rely on our Lord, Jesus Christ. You got this!!
the Simcox's Lisa, Brian, Jami and Adam
You are a warrior Haley! This is Kristin's aunt from Mass (Auntie) I met you once at your dad's house and once when you were at Kris's house. Stay strong Warrior Woman you have many people praying for you!
Dianne Balboni
We are praying for healing and comfort.
Jimmy & Heather Ferguson
Sending healing prayers your way. We are good friends with your uncle Bryan and will keep you in our prayers.
Kathy and Dave Vogelsang
You're in our prayers, Haley!
Cody & Kelsie Guernsey
Praying for you and your family daily, Haley, and asking others to pray for you, too. God is good!
Madeleine & Dean Moya
Haley Steve and I have you in our prayers and love you also keep your faith you will come threw this just fine. We are excited to give because you are such a beautiful person.
Steve and Donna
Gross
Steve Gross
Haley, I still have one of your couple of the books you made in my class, they are great! Thinking of you!
Katya Reka
We're thinking of you!! Keep up the strong and positive attitude. Lots of love, Sarah & Kalyn
Sarah & Kalyn Gibson
Hello Haley! Thinking of you! Boosting the signal! All the best!
Daniel McDeavitt (IU, Spring 2011)
Thinking of you haley! Miss you :).
Julia Rickles
we are praying for you many times daily. We'll get the word out!
Uncle Ron and Aunt Ellen
We're praying for your family.
Lonnie and Lisa Chidester
If they have shirts made I would buy some.
Heather Frederick.
Out of curiosity what organs does she need? I know some can be from a live donor, not sure if she needs those types. Praying for you and your loved ones.
Heather Frederick (Estes)
Thinking and praying for you Haley!!!
Tonya Dempsey
Praying for you and your family
Melissa hodge althoff
We are all praying for you Haley and your family!
Scott and Melissa West
Praying for you and your family Haley!
Nicki Ramey
Praying for you !!!
Rhonda Bartlett
Love you Haley! You are always in my thoughts and prayers!
Deb Arnold
Haley, you are in our thoughts and prayers every day!
Jeff and Rea Klink
You're a tough, beautiful kid; hang in there-everything will be great!!
Steve & Jeanne Hofferkamp
So sorry to hear this, Haley. Praying for you and your family.
Paula Terry
Haley, we are thinking and praying for you! You are an amazing person inside and out. We are only a phone call away if there's ever ANYTHING we can do!
GO TEAM HALEY :)
Angie Lubbers and Dave Bolotin
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Haley Okuley
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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