Sidelines: It's all about living; not just surviving

It is all about living, not just surviving. Take that from someone who knows. 

You wouldn’t think it by just looking at Thompson Falls Blue Hawk football coach Jared Koskela, one of the healthier looking guys you could ever meet, but he has an absolutely awful dirty little secret, a medical condition not many people around him, even those relatively close to him, really know much about. 

It has an unusual, weird-sounding name, causes Jared to carry hidden pain for large stretches of time and requires frequent visits to the doctor’s office, including regular complicated, multi-incision surgical procedures, which are a recurring part of his life now. Meaning regular medical maintenance of the almost constant kind to help keep it in check. 

He has chosen to live to fight with BHD, not just survive the puzzling, hereditary condition he has developed and been dealing with for over seven years now. He has undergone five major surgeries so far and is possibly looking at another later this year. He certainly is not seeking attention or sympathy during his ongoing health battle; he just keeps on keeping on. 

“It’s always going to be there, but it can be managed,” he says hopefully.  

“I am trying to stay ahead of it as well as I can, and I have a great support group at home to keep me on track,” he added referencing his wife Sherri and five kids back at the homestead. 

To more fully explain what he is going through, Jared is afflicted with a rare, inherited disorder called Birt-Hogg-Dube (BHD) syndrome. BHD is potentially cancer-causing, sometimes migrating into other adjacent organs in the body. It is an uncommon disorder, obscure enough to be considered an orphan disease, a rare but nonetheless dangerous malady. Symptoms of BHD generally develop when people are in their 30s and worsen over time. 

Although it affects different people differently, BHD often causes benign skin tumors, lung cysts and an increased risk of kidney cancer. In his case Jared has developed numerous cancerous tumors called fibrofolliculomes on his kidneys. His doctors monitor these masses closely and once they reach over four centimeters in size, either in combination or alone, it is deemed time for them to be removed to reduce risk of spread. 

Now 42 years old, Jared was first operated on in 2018, after an initial diagnosis located 13 of the masses over 4 centimeters long – five on one kidney and eight on the other – and those 13 were targeted for removal. 

Unfortunately, all of the masses could not be safely removed at once. Only two to three of the masses off of each kidney could be removed during each surgery, due to the fact that blood delivery is cut off to the organ to prevent excessive bleeding during the operation, and there is only a certain amount of time allowable for acceptable risk to the patient during this intricate but far from delicate procedure in the operating room. 

“They only have a set amount of time before my kidney starts to die so they are only able to grab two or three that are close to each other at a time,” Koskela explained in an almost clinical fashion, “before they have to release the blood to keep my kidney alive.” 

Since he had some “catching up” to do with the unwelcome 13 masses upon finding out about his condition, Jared ended up going through the complicated surgical process required once a year for the first four years after diagnosis. He had another, by now almost routine, surgery of the same kind and result in 2023, his last visit to the operating room to date. 

The procedure itself is an interesting blend of surgery and technology and a life-changer for people in need of this type of treatment. 

Operations are performed remotely by what is called robotic partial nephremectomy, utilizing the precision provided by robotic arms controlled through a console. The process is designed to minimize damage to the kidneys and other organs while safely removing tumorous material and navigating past other vital organs during the surgery. 

The procedure requires six incision points through the chest and torso area on the front of the body but, if a tumor is in an unfavorable position, additional incisions through the back are sometimes necessary as well to access affected areas that cannot be reached through the front. A few of Jared’s surgeries required additional, more intrusive incisions through the back. 

On the road to recovery each time post op, Jared says the surgery points remain tender and susceptible to reopening for several days after each operation. After that he spends about another week recuperating on the couch before slowly working his way back, and that total recovery each time takes about six weeks. He walks as much as he can stand as soon as possible in the days after the procedure to get going normally as quickly as he can following each BHD surgical episode. Still, it takes time to get fully right again. 

“It’s about a month and a-half until I can lift weights again,” he said, citing a personal measure of fitness for sure, a welcome last benchmark on the road to recovery for the Thompson Falls coach each time. Truth be told, BHD may have just met its pound-for-pound, weightlifting match in Jared Koskela. 

An incredibly busy man by any measure, Jared works a full-time job as an engineer for the Forest Service out of Trout Creek in addition to being the head coach of the Thompson Falls High School football and softball teams. He has had to make time to deal with BHD both professionally and personally. In addition to finding time to take both teams to skill camps and provide offseason workouts when possible. Besides being a full-time dad, with some of his kids already playing for him on his high school teams and a few more on the way. 

Oh yeah, he also coached the Thompson Falls High School weightlifting team for a few seasons in his spare time several years ago too (and probably in between and around BHD surgeries),and produced several state champions for good old TFHS in that sport, as well as guiding the Hawks to the 2021 State 8-Man football title, and the Blue Hawk softball team to the last three State B-C tournaments, all during these last seven years while quietly dealing with his BHD syndrome, mostly behind the scenes. 

Jared said he found out about his possible BHD susceptibility from family members that were aware of the condition but that only he and his father Marty Koskela seemed to develop severe symptoms on their side of the family. The condition often lays dormant in many people without significantly impacting them, another quirk of this strange orphan disease. 

Sadly, Marty passed away at age 63 in late 2023, largely due to complications from BHD. After having both kidneys removed due to renal failure, Marty required regular dialysis appointments to replace function.  

“Not a great situation. Dialysis was life to him,” Jared said. “He made the trip to Missoula every other day for treatment, he didn’t want to move there. Did that every other day for two to three years.” 

Eventually acquiring a home dialysis machine and being able to remain home in Thompson Falls eased that burden somewhat but also forced Marty into more of a form of forced medical self-care, a difficult process for an affected person living alone, albeit with regular visits from Jared. Dialysis became more and more of a grind over time, wearing on Marty mentally as well as physically. 

“He would get discouraged and tell me that he would sure like living more than just surviving,” Jared said, “and I kind of took that to heart. It’s why I am being pro-active in how I am approaching this. I want to do everything I can to take care of it.” 

Looking ahead to his children’s possibilities with BHD – individuals with the disorder have a 50% chance of passing it onto their offspring – Jared should be confident in how they will react if they eventually develop symptoms. 

It’s all about living, not just surviving. They should take that to heart, and do everything they can to take care of it.