Men Have Lupus' 2014 Press Release

There are moments that change everyone’s lives. Many will relive over and over again the day they met their significant other, the day they adopted their fur baby, when they got married, or when they had their first baby. For Heather Pontruff and Louis Obadal, they relive the first seizure. That was April 15, 2014. Their lives, unknowing to them, were about to be turned upside down.

    The thought process of such a young couple (he was 34, she was 32) is that it was just a freak incident, and he’d be fine. So, as a precautionary measure, since the seizure had him pass out, face first, onto a concrete floor, they went to the emergency room. The first hospital didn’t have a clue as to why it occurred, so they went to another emergency room. Basically, fix it and let us move on with our lives. Heather had just had a complicated surgery 13 days before the surgery, and was trying to ease into recovering. 

    Easing was never meant to be. The seizures kept coming. Lou ended up with a 3-person neurology team at Scott & White before he even had a primary care doctor. The first person to see him in neurology had noticed that he was leaking protein and red blood cells in all of his urine tests, and set up nephrology. Once again, all before a primary care doctor. 

    The neurologist saw all normal tests, yet the seizures continued. Keppra was prescribed, and the seizures slowed a little. Keppra was doubled, the seizures significantly slowed, with only one or two grand mals a week and a few absent and petit mal seizures breaking through. Lou had to give up his job as a truck driver in April, while the doctors at the e.r., and the first to see him in neurology, informed Heather she needed to ensure he had care around the clock so he didn’t die. So, all of a sudden, they went from a self-sufficient household to a house with no income, and eventually, a decreasing hopelessness associated with it.

    The medical team for Lou has grown. He has so far had the pleasure of having the following specialists treat him: 2 neurologists, 1 headache specialist, 1 neurological ophthalmologist, 1 endocrinologist, 1 fellow nephrologist and 5 staff nephrologists, 1 physical therapist, 1 orthopedic specialist, 1 neurosurgeon, 1 urologist (with the director of urology seeing him later this month), 2 rheumatologists, 1 gastrointestinal doctor, pain management doctors (3 or 4), and his primary. 2 psych appointments start him on that level of treatment, and a dermatologist is in the networks. He’s had 10 emergency room visits in 9 months, countless MRI’s, cat scans, x-rays, EKG’s, and other tests. He’s also had 6 small procedures, with 2 more coming.

    In November, the diagnosis was finally made, after much screaming at doctors. The ruling was that transverse myelitis was occurring. His first kidney failure had doctors decide to do a kidney biopsy. His kidneys failed again one month later, when the biopsy results had just came in; Stage 2 Lupus Nephritis. We found a new rheumatologist since the original one wanted to argue pathology, even though all the traits were there. The director agreed that it was SLE (Systemic Lupus Erythematosus) Lupus. The seizures inform us that it is in his Central Nervous System. He is on anti-rejection medication (Cellcept), steroids (Prednisone), seizure meds (Keppra), nausea meds (Phenergan and Zofran), anti-anxiety meds (Vistaril), anti-depression meds (Cymbalta), pain meds (Tylenol 3, Gabapentin, Imitrex, and Amitriptyline), Vitamin D (he’s deficient now), Magnesium (deficiency as well), Flomax for urine issues, and other pills are added and taken every few weeks to month. He is also prescribed to his “life line” as he calls it, his walker that allows him to walk into town.

    Now, on Cellcept and Prednisone, he has to be extra-cautious of contaminants. He wears a mask and gloves into town, since remission means giving up your immune system. Lupus is an autoimmune disease that makes your body think that normal body functions are actually diseases that need to be stopped. In order to be in remission, they must take the schizophrenic immune system and get rid of it. The protective measures he must take now leaves him ostracized.
   
Luckily, as he fights for disability, his medical care and most of his medications are covered. 
   
The problem is, most people don’t know about Lupus at all. The few that do know about Lupus rarely know that men get Lupus, although celebrities such as Beethoven, Sean Busby, Consequence the Rapper, Trick Daddy, Nick Cannon,  Seal, Tim Raines, Charles Kuralt, Jack Haley, Ray Walston, J Dilla, Michael Wayne, and Michael Jackson have/had it. When a man has Lupus, they are often hit harder medically than a woman. Even our rheumatologist stated he doesn’t understand why. 

    We hope that you will not only help us spread the word that men have Lupus, but that Lupus can kill, as it has done countless times before. Eventually, once Lou is in Lupus Remission, he hopes to start a charity for men that stand the chance to lose it all while enduring this debilitating disease, and to spread awareness and help get research in place.

    Please, spread the word that Men Have Lupus and join us on
Facebook, Twitter, Instagram, and/or Pinterest. There's also a support group for men.