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Family and friends of TJ Miller are raising money to pay for uninsured medical expenses associated with his liver transplant.
TJ has battled an auto-immune liver disease (Primary Sclerosing Cholangitis aka PSC) for the past 22 years. PSC is a progressive illness that attacks the bile ducts causing scarring, blockages, and in many cases bile duct cancer. PSC is strongly associated with ulcerative colitis or Crohn’s disease, which TJ also suffers from. There is no cure for PSC, but a liver transplant is currently the best treatment to eliminate the awful symptoms and avoid bile duct cancer. Due to TJ’s liver failure he experiences daily fatigue, severe pain due to bile duct blockages and spasms, cholestatic pruritis (an awful deep itching due to a buildup of bilirubin in the blood), and nausea. There is no area of life that isn’t effected by TJ’s chronic illnesses, in fact it is quite amazing how many functions the liver does and how problems can distress the whole body. Thankfully, the University of Utah is now offering living liver donations, which means that TJ can end his 6 year wait on the very long traditional liver transplant list. An angel of a friend, Rachel, has offered and been approved to donate part of her liver to TJ. Rachel came into our lives a year ago, and upon hearing TJ’s story, knew she wanted to help. After many months of praying and research and numerous tests we found out that Rachel is a great match. The surgery is currently scheduled for July 17th. We are asking family and friends to help with critical expenses TJ will face immediately after surgery.
TJ is an amazing and devoted father of 3 and a wonderful husband to Ainsley. Grace (14), Lucas (11), and Addison (8) are his pride, joy, and whole world. Despite his chronic health conditions, TJ has persevered to live a productive and full life. Coaching T-ball, baseball, and football for the past 8 years, he has become a staple to the little league and youth football communities. He always puts his children first, never missing a sports game, dance performance, or school activity no matter how he feels. TJ’s desire to push forward and keeping living life has helped him avoid the inevitable for a long time. But now it’s time for TJ’s liver transplant journey to finally really begin, and he needs our help.
While TJ has health insurance, many transplant expenses are surprisingly not covered. We were told to anticipate his anti-rejection medications to be up to $5,000 per month. These are medications TJ will take for the rest of his life. Another major expense will be the travel and living costs following the surgery. TJ and his family live in Boise, Idaho 338 miles from the nearest transplant center at the University of Utah in Salt Lake City. TJ’s wife, Ainsley, and Mom, Nancy, will be his main care takers during his recovery time. Ainsley works full time in Boise and will have to make several trips back and forth between SLC and Boise to maintain her job and their home. During the 2 months following the surgery, TJ and his care takers will need to live near the transplant center for daily visits and blood work. To give an idea of the expenses we expect, here is a list of some of the estimated costs:
One way flight to SLC – $89
Cost of gas one way – $38
Hotel room for 1 night – $75
Week of groceries for TJ and care takers – $100
Donations to Help Hope Live can help ease the financial burden of a transplant and allow TJ to focus on a healthy recovery and a long life ahead with his family and friends. Please feel free to share TJ’s story on your own social media or with any church or work groups.
TJ has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
This is so long overdue, but it’s time to finally finish up our quilt raffle giveaway in support of Tj’s medical fundraiser. I’m embarrassed at how long it has taken me to complete this quilt giveaway! Most of it is because TJ and I have had a hell of a year, the other part is that this quilt is so beautiful I have enjoyed having it in my home. Unfortunately, we found out a few months ago that TJ’s autoimmune liver disease (Primary Sclerosing Cholangitis) is back and attacking his new liver. We are devastated by this re-diagnosis, and have been trying to figure out how to keep living a good life despite this awful news. We have been taking things one day at a time, soaking up the good days, time with the kids and each other. We could not have made it through any of this without the help of our amazing community and of course our forever liver sharing sister Rachel Erkmann (and family). You all rallied around us and we were able to raise over $27,000 to cover TJ’s medical, living, and travel expenses since his transplant in July 2018. Since TJ came home after 6 weeks of living in Salt Lake City recovering from surgery, we have made 25+ trips to SLC for appointments and procedures. We have used over $20,000 of the funds raised to make this travel and ongoing medical care possible. Thankfully, we still have the remaining funds to help us through the inevitable trips to SLC for TJ’s future care. (As an fyi all donations are tax deductible and can only be used for medical expenses.) All of this is to say, THANK YOU! Those two words don’t seem like enough to express our gratitude, but it’s all I have. After reviewing and randomizing and praying over the list of everyone that donated to TJ’s fund, this beautiful handmade quilt will go to Nancy Fuhrman and Roger (I will private message you and arrange for delivery). The Fuhrman’s are a special family that have been in TJ’s life since he was a kid and also happened to know the Erkmann’s, it’s meant to be! This butterfly quilt is such a beautiful message of hope and endurance (created and pieced by my mom, Jane Holbrook, and quilted by my aunt, Pam Cope). My mom so perfectly titled this quilt “don’t quit before the miracle happens”. Thank you all for your patience in my huge delay of getting this giveway completed. Here’s to a fresh new year, one day at a time, hoping for many more good days. ❤️
Happy Liverversary to TJ and Rachel!
1 year ago today we woke up nervous and hopeful for what was in store, and we went to bed that night with a successful surgery behind us, Rachel with a little less liver, and TJ’s new liver already producing bile and getting to work! It has not been an easy recovery process, but we knew that going in. We were told that it would be at least a year recovery. We have had many wonderful beautiful moments this past year. I am especially in awe of the generosity of others and the power of a loving community. My favorite lesson from all of TJ’s struggles with chronic illnesses and even the roller coaster ride that this recovery has been, is that we have become pros at enjoying the little moments of joy that exist within every day. From getting a hug from one of our kids, to laughing at a silly joke, to just sitting on our patio watching the sunset. We all strive for happiness in our lives, and sometimes it takes an event like this to remind us that it isn’t some huge amazing thing that makes us happy, it’s the day to day. It’s the things we don’t even notice or miss until you are faced with mortality of yourself or a loved one.
Rachel is still doing very well. She has no lasting effects from the surgery, and recently had her 1 year follow up appointment in Salt Lake City and was released from the surgical team’s care!
I think the unpredictability of TJ’s recovery is what has been the hardest. The month of May TJ was feeling the best he has in a long time, we started going for bike rides, he was doing projects around the house and suggesting getting a gym membership. The main remaining issue from TJ’s transplant is one stricture where 2 bile ducts were stitched together. The scar tissue in that spot created a narrowing that caused bile to not be able to flow freely which in turn elevates TJ’s liver function and makes him feel nauseous, tired, and in pain. Since January TJ has had six ERCP procedures. An ERCP is a endoscopic procedure in which a scope is passed through the mouth and digestive tract into the bile ducts. TJ has had multiple stents of varying size and material placed into that stricture in an attempt to stretch it open while keeping the bile flowing through. The stents do a very good job of stretching the scar tissue open, but the inorganic material of the stent is prone to bacteria sticking to it. TJ has had a couple pretty major infections due to the stents. One did turn septic in the beginning of February, the second infection on Memorial Day weekend was caught just in time before it turned septic. Right now TJ is stent free for the first time this year! It is exciting, but this is definitely a trial period. There is a very good chance TJ will be getting another stent in the near future.
I am so grateful for TJ’s team of doctors at the University of Utah, for Rachel and her family and community that has adopted us, for our kids that have endured all the ups and downs right along side of us, for TJ’s mom who spent 6 weeks in Salt Lake City with TJ while I had to go back to work, and both of our families. We absolutely could not have done it without each and every one of you. We are so excited to see what the next year will bring!
Ainsley
It’s been just over 3 months since TJ’s transplant, and what a ride it has been! I’ve been updating Facebook on TJ’s (and Rachel’s) healing progress, and I’ve failed to post an update here since 3 days post op!
Rachel had her 3 month post op check up last week, and she is doing wonderfully. She said it doesn’t feel like she’s had surgery at all. Somehow she feels a little guilty for that because of TJ’s long healing process. But that is our biggest hope for her, no lasting effects from the surgery.
TJ is doing pretty well. A few hiccups here and there as his body adjusts to all the new liver and new medications. That is not unexpected by his transplant team, as they have told us many times that their job is to manage complications as they arise. We continue to practice our patience and trust in the process as it unfolds.
We are so grateful for all the amazing support we have received throughout this journey. All of this was made possible by the community surrounding us.
Lots of love,
Ainsley
Wow! What an incredible and overwhelming 3 days it has been! TJ and Rachel had their surgeries on Tuesday (July 17th), and they both went very well. Rachel’s surgery began around 8AM and she was recovering in the ICU by 3PM. TJ was taken back at 12PM, and his surgery began at 2PM. The surgeons said that Rachel couldn’t have had a more perfect liver for TJ. TJ didn’t need any blood products or transfusions, which is very rare. They were able to extubate him in the operating room and he was recovering in the ICU by 9PM. So many answered prayers just regarding the surgery alone. It went exactly as the doctors hoped it would.
Rachel was up and out of bed that same evening, but her main struggle initially was keeping her nausea under control. She was moved out of the ICU and into a regular hospital room the next afternoon.
Physical therapy had TJ up and out of bed the morning after surgery, and he walked to Rachel’s room for a short visit. It was the sweetest reunion I have ever seen. Keeping TJ’s pain under control was the biggest issue, and he was moved out of the ICU after 2 nights. He happened to get a room right next door to Rachel.
Now we are on day 3 and Rachel is doing wonderfully. She has showered and been out of bed a bunch, visiting TJ, walking down to the balcony, and today a trip to the Starbucks in the lobby. She will probably be discharged in the next couple days, and when she feels ready, will travel home to Boise with her parents.
TJ’s IV meds have now been switched almost entirely to oral medications, and he was out of bed and took short walks 4 times today. He had a very rough night last night, but he made it through that and has been much much better today. TJ has been sleeping a lot, especially after each trip out of bed, and even after brushing his teeth or washing his face. One of the therapists explained that his body is burning so many calories trying to heal, that any other activity is very draining.
Thank you all for the support, prayers, and love. It really has made all the difference. We are in awe of everything that has happened in such a short period of time and can see the future unfolding before us. We are so very grateful.
TJ and Rachel’s surgery is tomorrow and we can hardly believe this day is almost here! It feels so surreal, but we are all ready to get onto this next chapter of healing. We are getting settled into our home away from home, a 2 bedroom apartment close to the hospital. TJ doesn’t have to stop eating until midnight tonight, so we will all enjoy a delish dinner this evening. I will post updates tomorrow on my social media when I am able to. Thank you all so much for the love, support, and prayers. This community has been surrounding us more than we ever imagined.
Ainsley
Two weeks until surgery day! It felt like time was moving so slowly for the last couple months, and now it is speeding along. This amazing family and ours will forever be connected by the gift Rachel is sharing with TJ. So grateful for the generosity that is coming our way and so grateful that our paths crossed a year and a half ago. In fact, we will never quite be able to express how thankful we really are, someday we will pay it forward to others in need.
I can’t express enough the deep gratitude TJ and I have for all of the support he has been receiving. As many of you know, TJ’s Dad passed away recently, leaving a giant hole in our hearts. As the waves of grief crash in, there has been the wonderful blessing of family and friends comforting and lifting each other up. The reminder of the fragility of life and the importance of sharing love is so near at times like this.
With 45 days until TJ’s liver transplant, you all have already helped us raise almost $3,000! That is incredible, and I am blown away by everyone’s generosity and desire to help. I am hoping to keep this momentum going, in some form, as TJ faces a lifetime of anti-rejection medications and medical follow up expenses. My dream is for him to focus on healing and living the long life he so deserves without the worry of medical and travel costs. As I work on my ability to accept help and support (this has always been a challenge for me), I was reminded by a dear friend: how wonderful would it be for us all to be able to just focus on the joy of this amazing opportunity?!
Again, thank you all so much!
Ainsley
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TJ & Ainsley - we continue to stand with you two as you endure medical expenses and deductibles. We are praying for you and your family to flourish! Eric & Heather Tuininga
Heather Tuininga
from Sonja and Pat Holbrook, toward TJ's health and the quilt raffle.
Jane Holbrook
YOU ARE ALL AWESOME!!!
Arlen Donald
This is from Pat and Sonja Holbrook. They also want to be entered in the quilt raffle. Their contact info is 69 W Rhea Rd, Tempe, AZ 85284
Jane Holbrook
What a blessing to hear about your sweet story. Our prayers for you both. We met Rachel over 20 years ago on our daughter's move in day at college.
Linda and Rusty Craft
I’m a friend of Rachel’s and have been following your story. Much prayers to you and your family!
Andrea Rhodes
With much love and prayers for a complete recovery!
Roger and Nancy Fuhrman
We have been praying for you and your family for stamina, determination, peace and healing.
Courtney Reeves
Friend of Rachel <3
Laura Louis
Praying for all involved here in Nashville, TN Blessings to your family and the Erkmann family!
Marc Kochamba and Family, Medtronic
Prayers from Texas for your recovery. Blessings to both your family and the Erkmann family. In Christ and with his Love, Mark and Blanca Oncken Tomball, TX
Mark and Blanca Oncken
We are praying for speedie recoveries for TJ and Rachel.
Dean Steinmetz
Thinking of you all and sending love to the Miller and the Erkmanns!
Diane Donald
Rachel "Glitter", I am so proud of you and honored to be able to pray for you as you walk through this journey. Love you so much! ~Shanta
Shana Biddle
$10 from Darcy Williamson, PO Box 4190, McCall, ID 83638, $10 from Anna Stark, address to follow in pm $20 from Brenda Fulfer, address to follow in pm All are donations toward the raffle quilt.
Jane Holbrook
We're friends of Arlen, Diane, and Freya. Glad to be in a position (finally) to be able to pitch in. Will be thinking the very best thoughts for your whole family.
Melissa Waylan
Love you guys! -Libby
Libby Cope
Praying!!
T.C. and Kristen Johnstone
This donation is from Nancy Martin, 25202 So. Kingston Rd NE, Kingston WA 98346. She would like 5 raffle tickets for the butterfly quilt. Best Wishes TJ and family.
Jane Holbrook
TJ, We're CABI friends of Arlen and Diane Donald. We are honored to have the opportunity to extend our support of you in this life-changing way. May to have a COMPLETE and SPEEDY recovery!
Jeannette Bowman
Team Burgess will be thinking and praying for you all the way!
Chelcy Burgess
I love you both!
Abby Jensen
Getter done! Finish line is near. You truly are a special person and we are so grateful someone as equally special is willing to sacrifice so much to give you, and your family, the long life you deserve. We wish you both a speedy and healthy recovery. Love the Hippachs
Rick Hippach
good luck tj
andrew donald
I'm so thrilled that this opportunity has finally come for you. You are all so loved.
Arlen Donald
Dear TJ and Ainsley --- It was SO GOOD to see you guys last week. We are keeping you in our thoughts and sending lots of love your way. Hang in there! We will be ready to take you out on the boat any time. xoxo Pam & Paul; Shea & Libby.
Pam Cope
In our prayers
Jim Johnson
TJ - your Dad was a great friend of mine in high school, and a football and baseball teammate for 3 years, along with a lot of time together in off season conditioning and running. As you can imagine, with 3 years of sports, we spent a lot of time in the locker room, team meetings, and on bus rides. Great memories are made!!! I saw during the service today how strong Bill's influence was in each of your lives - the kids and the grandkids. Love was just flowing out of all those pictures - they were great. TJ, I was thrilled to hear of your upcoming liver transplant and can't wait for you to get to the other side of that process to be able to continue carrying on the Miller family traditions without the constant pain and medical complications you have been enduring. I pray that God will bless this procedure and carry you on through in a speedy recovery. Thank you for allowing me to contribute in a small way, as a means of showing my respect for my good friend Bill, and in honor of the values and strengths that he instilled in all of his family members that have made you such a loving and strong group today. My best wishes to all of you for the coming year and the changes you will find. Always take comfort from the memories and strong faith of Bill as he guided this warm and loving family. My very best wishes for each of you for the months to come. Quentin Howard (Borah '65)
Quentin Howard
Wishing you a fast recovery TJ. You're all in my thoughts and prayers.
Jeremy Ryan
We love you, TJ. Our thoughts are with you as you celebrate your dad's life this week, and we look forward to good news as you recover from your upcoming surgery.
Stephanie Miller
Best wishes from everyone at Bairds Dry Cleaners
Marcie Hammer
Ainsley and Tj, wishing you the best. Bruce Williams and Gro Buer
Bruce Williams
TJ's Father was my classmate. He was a wonderful man. I am sorry for your loss.
Ann Baird
Make checks payable to:
Help Hope Live
Note in memo:
In honor of TJ Miller
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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