I have long since neglected being a voice in my community of kidney sufferers who are stricken with the notorious auto-immune disease known as Focal Segmental Glomarulosclerocis, or FSGS for short. I won’t go too deep into what it is, I’ll save that for another time, but it’s an auto-immune disease that has already taken three of my kidneys (yes - it has mostly taken my transplant graft).
Seven years I have dealt with this. Phase One was my diagnosis phase (2012-2014). Going from a specialist, to NIH, I had slim hopes that various experimental drugs would be my salvation. It was not. A diagnosis that originally told me I would have a window of 10-15 years before needing a transplant, quickly evaporated into two short years. At the end of this phase, my life would change forever, as I would never experience a career, my marriage, fatherhood, and social status the same way again.
Early 2014, in fact on the same day, January 10th, I went into work late to meet my doctor at NIH. More often than not, I go to see my physician alone, to not inconvenience my wife or any other family member. Today, this was a grave miscalculation on my part. My doctor at NIH, Dr, Jeffery Kopp informed my that I had less than 10% kidney function and I needed a kidney transplant immediately. I was officially classified with kidney failure. That was devastating news and I was an emotional wreck driving to my office not sure how to explain it to my wife who was even more crushed on the phone than I was. I returned to my office and less than 5 minutes being there, my supervisor informs me that I am being laid off immediately. (Please note she was not aware of the news I had just gotten) My world was shattered on what I still consider the worst day of my life.
Phase Two, now commences. This was my transplant period (2014-2016). The next few months were hard. I had a newborn who could barely walk and an almost three year old and I felt like a complete failure as a father and husband. I am an awkward nurturer. I love my wife and my kids and they know its unbreakable, but at that time I felt I was more skilled at being a hunter/gatherer than a stay-at-home-dad. I tried my best. It was a financial nightmare for our small household. My loving mother and family stood by us, though, and never let us fall into ruins. Nevertheless, life was the hardest at this point than I can ever remember. The only consolation my wife and I had was that our kids would never know how much we suffered and had to go through. And their cute smiles and the joy of simply caring for them made us happy. As much as this was true, it made me feel more and more like a failure that I could not provide for them as I battled not falling into depression.
My faith in God was faltering. June 4th 2016, I went to the Franciscan Monastery in Washington, D.C. to simply yell at and curse God. I felt I had lived my life according to what I believed He wanted me to live it, served him, his people as best as I could, and didn’t live in excess. I felt there was no point in anything. So I let Him have it. As I was going through my tantrum inside the Church, quietly of course, I got a call that I missed. It was Georgetown, I had a donor and it was time for a transplant. Yup, sorry God. Uhhh, thanks. My bad. Yikes. Thanks.
June 12th I had my transplant. Wearing a Sean Taylor jersey I wore to each of my kid’s births to the hospital. It felt that since I wore it to those two greatest days of my life, it was a victory jersey and I was claiming it as a victory. Surgery went well. My donor recovered amazingly fast. Me however, man, it hurt like hell. The most pain I ever felt. At one point I swear I would rip into two, the pain was that bad. But it healed and I got over it. two weeks later, I got news from my new nephrologist, Dr. Monica Grafals, that my new kidney is showing signs of FSGS and that unless they take extreme measures, I will lose it too.
For six months, I endured a tube that connects into a major artery into my heart and three times a week, I went through a procedure called “aphaeresis” where my blood was cleaned and filleted. I took weekly shots of a drug called Orencia and Actar. The second drug, if not for the efforts of my nephrologist, I’d never have the chance to have because the cost was ….. yeah. Eventually, I began declining and I was removed from those treatments and Dr. Grafals made arrangements for me to have a catheter placed in my belly to prepare me for eventual peritoneal dialysis. November 2015, I started what I then considered a dream job with an ad agency. I had a position that I loved, and a salary that helped a great deal. There was a problem, I was no longer a spry 23 year-old out of school with two good kidneys, but an overweight, bow tie wearing 33-year old experiencing his second kidney failure. I am sad to say I couldn’t hang. I loved what I did, but kidney disease also affected my brain. Kidney disease means your brain is constantly poisoned with toxins that can’t be filtered regularly. I found myself working harder than than I would have to if I were normal. My family life was affected. I would get home from work around 8 pm. Play with my kids for a few minutes, and then get back to work (from home). In one period, I was sleeping downstairs so I could sleep next to my work terminal. I’d go to bed at 4am and then wake up for work at 6am. I still convinced myself I loved my job.
I got the call to begin dialysis in February of 2016. Balancing working in DC, while training to do home dialysis in the clinic was a huge hurdle to climb. I was afraid my periods of absence in the office would start weighing down on me and people would notice. I had to, you know - live, so I had very little choice. I got through training and that was over with. The first day I did home dialysis, I left work for lunch to do one treatment and would come back. I come back to the office, and my whole team was gone. Yeah, that’s not weird. I hear a message on the loud speaker that we have meeting in the conference room. I see the president of the company and HR VP, both do not live in the area. Basically, I got laid off again with a bunch of good people I liked a lot. They also closed our office, which was sweet office. Told my wife, again. Felt like the worst husband in the world. An utter failure in life. Each pie in the face I’ve experienced in life, though no fault of my own, felt like it was self inflicted. And that I somehow sucked at life and just couldn’t get it right. I went home and crashed on our family room couch and cried until my eyes were swollen. My wife came home and we cried together again. And once again, I thanked God my kids were too young to realize their dad was a complete loser.
Phase three begins (2016-present). I get used to doing this whole dialysis thing. It sucks but I get used to it and I am actually good at it. I get another chance at furthering my career. I join another ad agency. I was desperate to get back into the game and I found a place I thought I could possibly fit in. To get a job I did something I never did before, I wrote to the owner of the company and said they need to interview me because I am “THAT GUY” and if you don’t you don’t ‘nothing about ‘nothing. I got the job and was happy. I made some good friends. I loved my work. It was great. Had a team I considered a “ride-or-die” team, I felt was happy. I thought.
A very short time later, we had a conflict with a demanding client. I was made the scapegoat for something I wasn’t assigned or working on. In an instant without cause or justification, I was targeted as the sacrificial lamb and in my opinion to not be seen as discriminating me about my health (which I have been open and outspoken about), I was unceremoniously let go. This was even 1.5 months after I had surgery to disconnect my transplanted kidney which was making me urinate blood for several weeks.
Before I was let go, I felt I was not treated fairly. I got a “project of death” that spanned all facets of digital marketing and project management. I had less than a week to complete it or I was done, finished. I knew the writing was on the wall. It felt they wanted to make me quit, I wasn’t going to give in to that. I also knew there was nothing I could do to save my job. So what did I do, I vowed to finish this “beeeaatch”. I worked all day and into the night that whole time. The last night I was working on it I suffered a hernia breach, but did not notice it until the next morning. This hurt really badly, like the most pain I had been in since immediately after my surgery. I did something really dumb which I will not admit on this post, and drove to work (form Accokeek to Tyson’s). Driving that distance wasn’t even the dumbest thing I did. I got to work and saw a bump over my belly and I quickly Web MD’ed it and learned it was a hernia. A coworker noticed the bump through my shirt and told me I should got to to the hospital. I said no way and intended to work through the day. I was determined to finish my project. The day went on and at one point I was crying at my desk, it hurt so much. I was eventually forced to go to the hospital, in fact I was driven there. Went to the hospital had it temporarily fixed and had surgery to repair a few weeks later.
I returned to work the following week and the company decided to let me go. I wasn’t sad or upset. I finished that project from a hospital bed the day I was sent to the hospital. An epiphany came upon me. I can live with this disease and live a fulfilled life with my family. I can be happy. I am good at what I do (my career) and I don’t need to do it for anyone else and I can do it for myself and reap the rewards for me and my family.
It’s been two years since that happened. And I don’t have one bad thing to say about that company. They were a very good company and I cannot say one bad thing about them. In fact I endorse them as a great environment for employees or something. I’ve had professional opportunities here and there to keep me busy but more importantly I am working on re-launching my own consulting business. I work on my own, when I want. I get take my kids to school and pick them up. I take them to all their sports, piano, and ballet. I try my best to support my wife (and household) as best as I can while she works and supports the family while I work on my career and dream. I have her to thank the most. She is the only one I’ve lowered the curtain for. In my life, I have good days and bad days. She is the only one who has seen me at my worse on my bad days, and her love and support has been the fire that keeps my light burning. Also, there is my mom. She has loved me unconditionally, and my family, since day zero. She never stops being concerned and will always do what she can to ensure we are on our feet and fed.
It has taken me a long time to be honest and truthful about where I have been and where I am going in regard to my disease. But the bottom line is I am happy and I am empowered to endure my disease for as long as I am meant to. I also rededicate my efforts to fighting it for me and my kids, and the thousands who also suffer quietly. So I will continue to suffer quietly, I also intend on making a lot of noise.