The Walk-a-thon is Sunday September 22, 2019 at 4:00p.m./registration opens at 3:00p.m.
The event is being held at the track/football field at 7001 Lewiston road in Oakfield.
$20 registration donation fee or $30 registration fee includes t-shirt (purchase either online at Eventbrite.com or at the door; event will be cash only) · Walk (or run!) as many ¼ mile laps as possible in 60 minutes · collect sponsors (either per lap or flat rate) · Live music · 50/50 raffle
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Justin and Julie’s Journey
As a child, Justin always struggled with asthmatic symptoms. It wasn’t until a biopsy was taken much later in life that a diagnosis of Pulmonary Sarcoidosis was confirmed. This was in March of 2009.
Justin and Julie met in the spring of 2010 through a mutual friend. Justin’s firstborn son, Aidan, was 3 at the time. When they met, Justin was working in construction, driving earth moving, heavy equipment. Prior to that, he was a carpenter, builder, roofer, dry wall finisher, and worked in masonry.
Justin continued with the asthmatic symptoms until the fall of 2011 when a local Rochester Pulmonologist set up an initial evaluation at the Cleveland Clinic. He was told at this appointment that he was dealing with a terminal illness and he would be needing a double lung transplant at some point. Shortly after returning with this news, Justin was no longer able to physically continue working. Justin struggled for a few years, but then was doing great for a few years. He felt that a transplant was not in his best interest at that time; his life was better spent being happy and enjoying every moment.
Justin and Julie were married on June 1, 2012. They attempted to start a family of their own without success for several years. They decided to seek medical assistance and underwent seven rounds of Intrauterine insemination. Doctors told them that there was a 1 in 60 million chance that the last round could work and IVF probably would not even be an option. Four short weeks later, Julie’s blood work was positive for pregnancy hormones and at six weeks, doctors confirmed the miracle heartbeat. Julie’s pregnancy was complicated by placenta previa and baby Grayson was delivered via c-section at 39 weeks on March 11, 2016.
Julie returned to her work as an LPN after Grayson was born but was forced to stop working in April of 2017. By this time, Justin’s health had declined, and he was in and out of the hospital on a consistent basis. This meant he was struggling to take care of himself and was not able to care for Grayson while Julie worked any longer. His health continued this downward spiral after a prolonged ICU stay in December of 2017.
At this point, Justin and Julie decided that it was in Justin’s best interest to seek another pulmonologist’s opinion. Justin met with his new local doctor and was once again referred back to the Cleveland Clinic for another evaluation. Here he was told that he needed a double lung transplant, but not emergently. It would be best to wait
until he had exhausted all his current lungs’ function because the average life expectancy after transplant was only five years.
As his health continued to fail at home, Justin and Julie frequented Cleveland Clinic on a regular basis. Doctors there attempted to manage his sarcoidosis medically and would try new findings as they became available. This went on for months, and after numerous setbacks, doctors finally decided that Justin’s body had handled enough. For six months (in late 2018-early 2019), Justin was unable to leave his couch and was dependent on 8-10 liters of oxygen at all times.
Justin was medically cleared for the UNYTS transplant list in March 2019 and the wait began…
63 days after being placed on the transplant list, Justin received the call they’d been waiting for. A young man had lost his battle with addiction, and in their grief, his family selflessly made the decision to donate life. Thankfully, his lungs turned out to be a match for Justin, and this is where the #justinsjourney that most of you have been following on social media began:
*The following is a summary of Justin’s medical events, in Julie’s words, with the details that they have chosen to share publicly:
· 5/23/19 9:20am- call from clinic new lungs!
§ 3pm -arrival to clinic
§ 9:30pm -taken to operating room
§ 10:45pm – first incision was made
· 5/24/19 7:45am- starting chest closure
§ 11am -surgeon reports unable to close his chest, attempted for 3 hours but Justin’s heart kept failing, so chest wound was left open. Justin was placed in a medically-induced coma.
· 5/26/19 5pm taken to OR for chest closure; surgery lasted 3.5 hours
· 5/27/19 Justin tested positive for a major bacterial infection, began treatment
· 6/1/19 Heart still failing, Justin started on ECMO (Life Support; machine doing the work of his heart and lungs.)
· 6/3/19 Tracheostomy placed at the bed side
· 6/5/19 Started IVIG therapy and plasmapheresis for acute rejection (his body was rejecting his new lungs)
· 6/8/19 Consult by Palliative care, as Justin had been on ECMO for 7 days and doctors felt there was nothing more they could do at this point.
· 6/10/19 Tested positive for another very rare bacterial infection
· 6/19/19 Surgeon attempted to place a snail pigtail drain at the bedside to drain some blood in his chest cavity. His lung was punctured in the process. He was bleeding into his airway and needed multiple units of blood.
· 6/20/19 5pm taken into his 3rd surgery for blood pooling in his chest cavity; surgery lasted another 3.5 hours. Attempted VATS procedure (small incisions and use of camera) unsuccessfully, needed to have a thoracotomy where they cracked his ribs and opened left side of his chest. Chest was closed.
· 6/21/19 7am was taken back into surgery for uncontrollable bleeding; was in the OR for another 4 hours. Left chest again left open, as surgeons packed his chest cavity in attempt to control the bleeding and needed to go back in to remove.
· 6/22/19 Justin was started on kidney dialysis, as his kidneys were failing. He required full support for 4 days.
· 6/23/19 Taken back into surgery for 2.5 hours for to clean out his left chest and attempt closure (with success!)
· 6/25/19 Justin was taken off dialysis and ECMO (after 22 days total)!
· 6/26/19 Diagnosed with an upper GI bleed, ulcer found in stomach and was cauterized
· 6/27/19 CT of chest and abdomen showed a major blood clot in his inferior vena cava (vein that carries blood back to the heart). Taken down to surgery to put an IVC filter in to prevent the clot from traveling to his heart, lungs or brain.
· 6/30/19 Justin spiked a temp of 105.6 (This is the highest temp ever recorded for a transplant patient at the Cleveland Clinic)
· 6/30/19 Major right gastric artery bleed found via endoscope at the bedside. Taken to surgery to embolize and cauterize the bleeding vessel.
· 7/1/19 Lumbar puncture at the bed side to look for infection. Results were negative!
· There were 126 units of blood in total transfused into Justin’s body during these medical events. For non-medical people, the adult male body has only 8-12 units of blood in total. Justin’s ENTIRE blood volume was replaced 10+ times over…and he survived to tell his story!
At the time that this is being written, Justin remains inpatient at Cleveland Clinic. While he is no longer critically ill, he is still very medically fragile. He continues to make small positive strides forward, but his recovery will be a lengthy one.