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Adversity brings perspective

Times Observer photo by Stacey Gross Joseph Kirkpatrick has been living with renal lupus for 13 years

Sometimes, the greatest gift that adverse life experiences can give us is perspective.

That’s what Joseph Kirkpatrick has gained from a decade of medical issues.

At the age of 16, Kirkpatrick was diagnosed with lupus nephritis, or renal lupus. The autoimmune disorder causes the body’s defense system to attack normal body organs, like the kidneys, just as it would attack an infection or virus. This causes swelling, inflammation, and scarring to the kidneys.

A combination of factors can lead to lupus itself becoming renal lupus, including everything from genetics and family history to environmental factors like infections, pollution, and trauma. It results in the body’s defense system becoming compromised.

Basically, when the immune system is busy doing other things, that’s when latent issues like renal lupus can flare up and become known.

“My parents and all of my siblings are carriers,” said Kirkpatrick, “and I was a carrier, too, until I got bronchitis.”

A nasty bout of the respiratory infection in August of 2005 caused his lupus to rise to the surface by October of that year, marking his transition from age 15 to 16 and setting into motion a series of events that would eventually lead to his current issue: kidney failure.

Overall, the lupus itself was not particularly troublesome to manage, except for the learning curve that comes along with putting together (and remembering to take on time) the cocktail of immunosuppressants, steroids, and other medications that treat the symptoms of the disease.

“It just feels like a really bad flu,” said Kirkpatrick of the lupus.

That was what his primary care physician first thought as well, but finally after his fifth visit to the doctor for the nonstop flu-like symptoms, he was sent for bloodwork.

The bloodwork indicated that whatever was going on was definitely more than the flu, and Kirkpatrick’s care was then transferred to Pittsburgh Children’s’ Hospital, where he received a kidney biopsy. That biopsy confirmed the lupus had already affected his kidneys. At that point, Kirkpatrick’s kidneys were at about 43 percent functionality.

Other than the medication regimen, Kirkpatrick said there weren’t a ton of challenges associated with his continuing to live his day-to-day life. Yet, the addition of immunosuppressant and steroidal medications put a damper on his high school football situation. He played for the Youngsville Eagles until his diagnosis. The following year, he was still on the team, but saw very little of the field because the medications not only made him more susceptible to common infections, but when a normal cold or flu found its way into Kirkpatrick’s system, the symptoms were more pronounced and they lasted longer.

At the age of 19, Kirkpatrick went back to his hometown of Erie — his family had moved to Pittsfield in 2011, to study electrical maintenance at Triangle Tech. He then came back to the Warren area, where he’s been ever since.

Kirkpatrick got hired at Whirley DrinkWorks almost eight years ago, and he’s been there ever since. It was there that he began talking with coworkers who’ve become social supports, along with his family, roommates. Co-workers are working with his family to put together a couple of benefits for him later this month.

So what’s taken the “basically manageable” issue of renal lupus and pushed it into a more pressing issue?

Around mid-March of this year, Kirkpatrick started having increasingly troublesome headaches. When they began to infringe on his daily functionality, and when his eyesight started to get blurry, he went for a check-in with his PCP. His blood pressure was significantly high. It was so high, in fact — coming in at 230 over 150 — that it constituted a hypertensive crisis, and his PCP couldn’t treat him. He was sent directly to the emergency room instead. The emergency room staff, in turn, sent him straight to UPMC Hamot in Erie that night.

It was there that his renal specialist told him, after a host of new tests, that his kidney function had plummeted, from a percentage of functionality in the mid-thirties just six months prior to around 6 percent.

“The prevailing theory is that it was the blood pressure medication I had been on,” said Kirkpatrick. He said there’s no official answer.

And it really doesn’t matter, he said, because the fact is he needs dialysis.

Kirkpatrick gives himself peritoneal dialysis daily.

“It takes about nine hours every night, and I do it overnight,” said Kirkpatrick

It’s the process by which he hooks up to a machine that does the work of filtering his blood impurities that his kidneys would be doing if they were functional.

When he got the diagnosis of kidney failure, of course it was hard to hear but, he said, “it is what it is.”

Because the dialysis is working right now, he’s choosing not to worry too much about the wait time on the kidney transplant list.

The wait –15 years.

Kirkpatrick, family and friends have all taken the steps to get on the UPMC living donor list, and, if one of them proves to be an acceptable match, his wait time could be reduced to a month or less.

Should one of them get the green light to donate their kidney to his cause, “it could be just as soon as they’re able to schedule it,” he said.

Either way, Kirkpatrick’s experience with both the lupus and the resulting kidney failure has given him one major life lesson: perspective.

“You can’t let the little things get you down,” said Kirkpatrick.

From trials with employment due to his need to take often unexpectedly and sometimes extended leaves of absence for medical reasons, to the impending financial pressure, Kirkpatrick said there are lots of disappointments in life that he could allow to overwhelm him. He chooses instead to focus on the big picture and take each setback in stride as he focuses all of his energy and attention on the transplant process.

The surgery itself comes at the price of around $450,000, of which his employer-sponsored insurance will cover 85 percent. Ever since being placed on medical assistance as a secondary insurer following his need to apply for medical leave of absence coverage from his job, the remaining balance on that surgery will come in somewhere around $70,000. How much of that will be covered by his secondary insurance is, as of yet, unknown.

“You can’t get stressed out about the day-to-day setbacks,” said Kirkpatrick.

In an effort to defray the upcoming medical expenses, coworkers, family, and friends are hosting a spaghetti dinner benefit from 4 to 8 p.m. Saturday, Sept. 22, at the Calvary Baptist Church, 445 Conewango Ave. in Warren. The cost for the dinner is $10 for a full portion or $5 for a half portion. A Chinese auction and 50/50 drawing is planned for the following Saturday from 7 to 10 p.m. Sept. 29, at the Russell Roller Rink, 7385 Market Street in Russell. Open skate is $6 per person and non-skaters can attend free of charge, and proceeds will benefit Kirkpatrick’s costs of medical care.

For more information on becoming a living donor, go to livingdonorreg.upmc.org.

Visit the event page on Facebook for more information or to RSVP to the benefit dinner.

Donations of any kind can be made my contacting Courtney Shellhouse at (814) 706-9495 or Amanda Pierce at (814) 706-8094.

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