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This is Kenneth “Scott” Harper — as his friends and family call him, Scott. At the young age of 16, Scott was diagnosed with Hodgkin’s Lymphoma. In an effort to fight the cancer, Scott underwent chemotherapy and radiation treatments to combat his cancer. In the process of the treatments, the radiation did long term damage to Scott’s heart. In 2010, he started having trouble breathing and was eventually diagnosed with congestive heart failure. After triple bypass surgery, Scott’s team of doctors informed him that he needs a new heart, or a lifesaving heart transplant. Without a new heart, Scott’s options will quickly run out and he will sadly run out of time.
As a child, Scott went through a great deal, but despite facing cancer, he has always had a positive attitude. Scott recently married his girlfriend, Dawn of over ten years, and they are ready to enjoy a new life together. They have no children of their own, but have nieces and nephews and are very much animal lovers. They adore the time spent with their family, friends and pets and hope to one day start a family of their own. As a result of his illness, Scott has been out of work and struggling to make ends meet. He faces severe fatigue and swelling, and it has become very difficult to be able to breathe on his own. Scott was let go from his job when he started missing work due to emergency hospital admissions. He can no longer work and the medical bills, trips to Charlotte for doctor visits and the everyday costs of living have become overwhelming. Scott is also facing extensive co-pays and deductibles, caregiver fees, and will be required to relocate closer to the hospital. Scott will soon need costly, post-transplant medications to halt rejection; which are needed for the rest of his life.
Transplants are lifesaving but very expensive, and while having health insurance has been a blessing, it is very limited in what it covers outside of the transplant. With the loss of Scott’s job, he is now having to pay a very high health insurance premium out of pocket. He has started the process of applying for disability, but that can take many months before he is approved. Scott is in great fear of losing his health insurance, his home, and his opportunity for a heart transplant, as his life depends on all of these. Scott is desperate and is asking for your support!
To help with this financial burden, a fundraising campaign in Scott’s honor has been established with Help Hope Live, 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 to the full extent allowed by law, are held by Help Hope Live in the South-Atlantic Heart Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a donation to this fundraising campaign, please click on the yellow DONATE NOW button. For more information, please contact Help Hope Live at 800.642.8399.
Thank you ahead of time for your thoughts, prayers and support. Any donation amount, no matter how big or how small, is one step closer to a brighter future for Scott.
Gratefully,
Scott’s loving family, friends and Community
Scott was airlifted back to Charlotte last night. He had a stroke. They're doing tests and so far suspect it's TIA.
On a more personal note, this whole surgery has been rough and a strain on him and I both. We're both mentally and physically drained, him more physically than me obviously. Scott's body has gone through so much trauma he has to relearn and manipulate how to manuveure through everyday activities. It's for sure been a tough struggle these last couple weeks. We both hope to be able to report some good news soon.
The stay in the hospital ended September 2nd. Scott's been home since then with his artificial heart put in. There have been some complications along the way. During the stay in the hospital, Scott had a stroke. There seem to be no lasting effects from it however. We also had a scare when his driveline became unattatched. The hospital staff were immediately retrained on that mistake. They held him for 5 days longer than expected due to his blood thinner levels being too low. Then, after all of this, the day after being home he got a sinus infection and we've both been sick since. It's definately been a rollercoaster.
Once home we realised there are more challenges. Moving around has proven to be harder at home than it was in the hospital. Being sick may contribute a little, but overall it's been a struggle. He continues to deal with weakness in his legs. He's fallen once since being home when he tried to bend over while standing. A small bruise appeared after but no serious injuries. He has difficulty with every day tasks and needs care almost around the clock. I was able to get him a shower chair and with the Doctor's orders he can finally take an actual shower. Little steps.
Tomorrow we're getting a walker and he's going to start walking our breezeway for physical therapy. We have a nurse coming in twice a week to check his blood and a PT and OT set up to come sometime this week. His dressing needs to be changed everyday on his drive lines, (the tubes from his side to his pump) which I trained to do. He and I were trained to change his pump out in an emergency and we have a spare. He still needs to go back and forth to NC 3 times this month and twice every month after that until the end of November. During these visits they will check his pump and switch it out periodically.
Out of Surgery and in recovery! Hopefully they'll wake him in a couple days.
We left the room at 5:30 am this morning. They came in to get him and take him down to get prepped for the OR. Donna and I got to see him before they sedated him and we said our goodbyes about 7. The doctors started about 8:45am and they keep updating us every hour. They say he's doing good. Please keep praying.
Scott was admitted yesterday for his pre-op stuff. Heart cath, x-ray, EKG and lots of blood tests done. He'll start his operation preparation about 5:30 am Monday and they'll start the surgery about 8 am. On average the TAH surgery takes anywhere from 6-18 hours. I will update here as I get updates. He will be sedated for days after, anywhere from 2-14 days. These are estimated times from best to extreme. We hope Scott's time falls somewhere in between or (even better...) on the lesser side.
The first steps on Scotts journey started this morning. His doctors wanted him admitted to the hospital over the weekend for prep and testing for Monday's surgery. He is nervous but in good spirits and thanks everyone for their continued love and support.
We find out Monday 7/25 what day we go to the hospital. Scott's Total Artificial Heart surgery is the 1st of August, but they may want him in a day or two earlier for pre-op stuff. This will be our final week at home together for a long stretch. The average hospital stay after surgery is at least a month. They will remove his defibrillator (ICD) and his IV Picc Line (Primacor). No more home nurse and no more home heart monitor machine. These will be replaced by a battery operated heart pump in a rolling backpack. He will be hooked up to that 24/7 until a heart becomes available.
So, something good came out of all of this today! Ever since his radiation, when he was very young, Scott's teeth have been bad off. The radiation took a toll on many parts of his body. To most it will probably seem like a small thing, but to someone who has been embarrassed by his smile for so long, it was amazing! When you have major surgery they worry about infections in your body spreading. One of the big things they look at is your dental health. Scott's been seeing a dentist at the hospital to work on getting some infection cleared up and cavities filled. In doing so, they put fillings in 4 teeth today. 3 were his front teeth. Being that they are the first thing that people see when you smile, he's been self conscious about how they've looked. Today, when he sat up from having his fillings done, he smiled at me. It was a very crooked smile, as his face was still droopy from the medicine, and I chuckled a bit. This made him smile a little more and immediately I noticed a huge difference. No more black spot or small chip! They handed him a mirror and I can tell you happy doesn't even describe what he felt today!
Recently my doctors have decided to put in a Total Artificial Heart to get me through to a full heart transplant. The IV medicine (Primacor) that I am on now will not support my heart for the average amount of time I will need to find a heart donor. This TAH could give me upwards of about 2 years time. What this means is that my ICD (pacemaker/defib) will be removed and I will be off the Primacor IV meds and have a mechanical heart. This also means that I will need to be in the hospital in NC for at least a month. My body will have to adjust to the TAH and I will need medical attention 24/7. Dawn will have to make frequent trips back and forth while she cares for me, works and takes care of the dogs and our home.
Hey guys, we will be heading to Charlotte again 7/11 to get the word on full artificial heart or waiting for a donor heart. Scary stuff but I have faith in the lord above that he has directed me to the right people.
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Praying for a speedy recovery my friend
Diane baker
Prayers for your journey ahead!!
Amy Morris
I love you my precious brother!
Angie
Praying for you!
Amy Southern
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Scott Harper
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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