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Let me begin by giving a little background info as to how “we” came to be here. “We” are Terry and Sharon Freeman and have been married 29 years. Terry isn’t a huge technology fan, so I (Sharon) am overseeing this page.
Terry was diagnosed about 8 years ago with idiopathic pulmonary fibrosis (IPF). This illness causes uncontrollable development of fibrotic tissue within the lungs, effectively eliminating their ability to transfer oxygen into the blood. This, obviously, is not a good thing. The disease is progressive and, while there are medications that may slow its progress, there is no cure. Victims eventually become hypoxic and pass away without the intervention of lung transplantation.
Terry’s condition worsened significantly in August, 2021 and so we have begun the journey towards a double lung transplant. We are extremely hopeful that the “old Terry” will be back after the transplant surgery and rehabilitation. That said, our transplant team tells us that this is an extremely risky and brutal surgery for the body to withstand and complications are the norm rather than the exception.
Cost of this type of surgery easily reaches $1 million. We are extremely blessed to have good insurance; however, insurance doesn’t cover all the incidental expenses like commuting to and from the hospital during Terry’s stay and then to rehab and other appointments after his discharge. We are fortunate that we do not have to move to Chapel Hill and rent housing prior to surgery; however, we do have a 120-mile round trip journey and then parking expenses, etc. for each trip. The incidentals will add up quickly.
Based on the recommendations of our transplant social worker and financial assistant, we are going to do some fundraising to help out with these and unforeseen expenses that may crop up. We don’t know when Terry will have his surgery, so we want to go ahead and get started now so we don’t get caught off guard and have to get this set up in a rush.
Terry and I have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses and they will absolutely ease our minds as we move forward with the rather intimidating process. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. If you’d like to organize a group fundraiser on our behalf, contact me, Sharon, at sharon.freeman785@gmail.com or (919) 624-7963 and we will help you get things organized. Also, please share Terry’s page on your social media.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Terry has passed the 3-months post-surgery mark and is doing great! Some of his medications are being reduced, a couple have gone away entirely, and one is being adjusted to achieve the desired blood concentration. We are down to one transplant clinic visit per month from one per week.
Terry has completed physical therapy. Those visits were in Chapel Hill so further reduction in our trips back and forth (110 miles round trip). He is allowed to lift 25 lbs. now and so he's working on upper body strength at home with some exercises the PT gave him at "graduation". We're also walking everyday, when the weather permits, usually about 2.5 miles at a time.
Terry is monitoring BP, temperature, pulse, and blood sugar daily and he does at-home pulmonary function tests each night. He's a trooper for sure and his hard work is paying off! His pulmonary function, as measured at the transplant clinic continues to improve. This tickles us pink!
We had a quiet Thanksgiving at home, just the 2 of us. We still are avoiding gathering indoors with unmasked people so as to avoid the opportunities to pick up Covid, RSV, or flu. S far so good. Terry picked up a cold somewhere, but he's getting over it slowly. It set him back some, but he's regaining his stamina again.
So at the point in time, we couldn't be happier with the direction God is taking our life together. We are anxious to be able to see people again and go camping, but the patience for that day will pay off. After cold/flu/Covid/RSV season passes, we hope to hit the road again. In the meantime, we'll celebrate Christmas and our Savior's birth just as we did Thanksgiving, quietly and at home, but there will be joyfully placed decorations!
Terry continues to have a little progress each day after a minor set back on Monday. It seems his pre-surgery medications are delaying his healing process. This is in part due to his short stay on the waiting list. One med. was stopped immediately after his listing, but 4 days wasn't enough time for it to clear out of his system. The other is an immunosuppressant that most recipients don't take until after transplant, but Terry's been on it for several years so he was already immunosuppressed. Oh well, the main thing is that ther is progress. We will likely be dischaged early next week! We will increasing our walking in the mean time!
We thank you for reading and for donating in Terry's honor. The funds will come in handy as we move into the rehab phase of recovery and we make daily trips to and from assorted facilities! Blessings to you all.
We're at day 10 now and progressing nicely. A really good day is followed by a mediocre day, but there is progress even on the mediocre days. He just tires more quickly on those days. Terry is walking 2-3 times a day, some days farther than others, but still, walking. We have nearly no complications, praise God. The only wrinkle has been an air bubble trapped in the right side of Terry's chest cavity. They inserted a small catheter into the space and the latest x-ray shows it is shrinking. We are in the step down unit now and enjoying more independence, although all the drain lines make independence a bit of a challenge. Still, everyone is pleased with Terry's progress. Thanks for reading.
This update is the big one. Terry got his new lungs late Friday (8/5/22) and is recovering at a remarkable pace. He’s doing 3 walks per day. Some of his tubes are coming out. If he passes his swallow study, which is happening this very moment, he’ll start on thick liquids by mouth.
The changes are remarkable. Just watching his slow, unlabored breathing without an oxygen cannula still brings tears to my eyes. I only wish this transformation could have been possible without the loss of a young person from Florida.
Terry is now officially on the organ waiting list. His score of 37.4 is still high enough for him to be considered when lungs become available but isn't so high that he moves to the front of the line. We are excited for this next phase of our journey and we are now waiting on the call to come to the hospital for surgery!
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For my honorary grandparents, you both mean the world to me and I am happy to help in any way I can!
Alysha Zimmer
Keep getting stronger Terry!!!
maureen vann
So happy to see you guys enjoying "day to day" life again!
Jenny Campbell
Praying for you!!!
Tracey Lozares
We hope Terry has a speedy recovery! As always, we are here for you if you need anything. Sharon - Remember to take care of yourself so you can keep your strength up.
Jeannette & Matt Moore & Poore
We ❤️You guys!
Carla Esworthy
We are praying for you both as you walk through this!! God is with you and will give you peace as you seek Him. Let us know if there is anything you need! Just know you are in our thoughts and prayers!
Mark & Sherri Schlax
Sending you both light & love! Ginger & Lori
Ginger Bryson-Harbin
Keep hanging in there. Judy and I are praying for the two of you.
John Myklebust
Sending you much love and prayers.
Tim and Jamie
Jamie Vrabel Barber
You both will be in my prayers. You've got this!
Lynda Holland
Thinking of you on this journey!
Kay Sams Kelley
Our hearts are with you!
Ellen & Jon Giggi
You two are in my continued thoughts and prayers.
Christa Deyle Motz
We are praying for you guys
Pam and Merrick Loveland
❤️
Kendra Phipps
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Terry Freeman
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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