Help Rich with his fight against CIDP

Hi, my name is Christine Lepis and I am writing to tell the story of my father Richard Lepis and the nightmare he has been living in since July. In a matter of months, Rich went from being perfectly healthy to paralyzed from the waist down. Insurance will not cover the treatment he needs to get better.

 

Rich is the husband to Donna, with 3 children; myself, Lauren, and Richard. He has 2 granddaughters, Kayleigh and Ariella, who are his pride and joy. Rich has been a carrier for over 30 years, putting in endless hours of strenuous labor and overtime, all while making sure his family had exactly what they needed. Due to his line of work, that led to him needing a hip replacement. He had his first hip replacement years ago, where he developed a pulmonary embolism and almost died on our living room floor.

 

On June 7th, my dad received his long overdue 2nd hip replacement. We were initially worried about him throwing another clot - what we didn't know was that would be the least of our problems.

 

His surgery went perfectly - he had no pain, incision looked great, he was up and walking and in great spirits. He went to his 2 week follow up appointment, and his doctor had cleared him to drive the next week.

 

The day after his doctors appointment, he started to have very bad back pain in 1 specific spot of his spine. We assumed it was sore from the epidural he received during his surgery. He also started to develop what he described as a "rubber band feeling" around his belly. My dad, who loved food more than any other person on this planet, no longer had a desire to eat. He lost his appetite and was no longer interested. Each day this back and belly pain became increasingly worse, so we brought him back to the hospital where his surgery was. Every single MRI, CT scan, and ultrasound came back negative - meaning they found nothing wrong. So they sent him on his way with no real diagnosis.

 

He became increasingly more weak, and on July 4th he had his first fall. My sister and I had to peel him off the floor back onto the couch - he had no strength in his legs at all.

 

July 7th, my dad fell again. This time he fell backwards and slammed his head. He is on Coumadin, a blood thinner to help prevent blood clots, so it was back to the hospital to make sure he had no internal bleeding. After work I met my parents in the emergency room, where a neurologist found that he had no deep muscle reflexes. He was admitted, and again after a week of every diagnostic test under the sun, they found nothing. They sent him off to rehab, again, with no real diagnosis.

 

Rich made some progress in rehab, but was unable to take full advantage of physical therapy due to his symptoms holding him back. He started to develop terrible migraines and got extremely dizzy and lightheaded when he was turned, so rehab decided to send him to a 3rd hospital to figure out what was going on.

 

At this hospital, an angel sent from above walked in, heard all of his symptoms, and suggested Guillain-Barre Syndrome. GBS is an autoimmune disease where your immune system basically attacks your peripheral nervous system, causing rapid onset of muscle weakness and paralysis. If left untreated, paralysis may be permanent.

 

This brings us to mid-August. He received 6 plasma exchange treatments, which is one of the few treatments offered for GBS. They were now calling it CIDP - chronic inflammatory demyelinating polyneuropathy, which is just the worst version of GBS. He had some symptom relief, and all was looking up. He was transferred back to rehab feeling good.

 

Until the Social Worker walked in and said insurance would no longer cover acute rehab, and that he would have to be transferred to sub acute rehab. Meaning he was going from getting 3 hours of therapy a day, to 1 hour a day. Upon arriving to the second rehab facility, he was met with staff that would yell at him for needing help getting cleaned and changed. They would drop off meals to a man who's hands are so contracted he can't even hold a fork, and walk away. He hated it there. His therapy was minimal, and he became extremely depressed. He stopped eating, and his symptoms were coming back, and getting worse every day.

 

My mom found a neurologist who specializes in GBS/CIDP, and he suggested going back to the hospital for more plasma exchanges. He is getting worse by the day - now needing supplemental oxygen on and off, trouble breathing, cannot use his hands as they are so contracted, and cannot move a muscle waist down. He has been paralyzed in a hospital bed since July.

 

My mother has been in and out of lawyers for the last 2 months trying to figure out how to get my dad what he needs without losing everything they've worked so hard for all their life.

 

With this diagnosis, physical and occupational therapy is so crucial in recovery, and insurance just simply will not cover it. If we can raise enough money, we can get Rich back into an acute rehab, and get him the therapy and resources he needs to be able to walk again. Time is of the essence with this disease - the longer he goes without therapy or treatment, the greater the odds he never gets better. Any donation will help us move closer to this goal.

 

Rich is the type of man who would do anything for anybody. I am quite confident I will never meet someone as selfless as he is. He has made countless sacrifices for his family over the years, and has never once put himself first. He is the best dad I could ever imagine existing, and it is absolutely heartbreaking watching a man who is so used to taking care of others rot in a hospital bed, unable to do anything for himself. This is our only hope of getting this man the resources he needs to get better, and to come back home to his family.