The Elephant in the Room

As most of those who know me are aware, I have survived and continue to survive a terminal prognosis which particularly affects my brain and heart. I have been contemplating whether or not to write about it in my blog; and after seeking the advice of some friends, I have decided to lay it out so that it is clear to everyone what it is, how it affects me and how I survived it. For those of you who are already in the know on this, I will also take this opportunity to update you on my condition.

It is called Abnormal Mitochondrial Disease. In my particular case, it is located in the 2nd complex of the mitochondria of my cells. Little is known about the condition and especially about my particular mutation. This condition is more commonly found in the 4th or 5th complexes of the mitochondria, not in the 2nd. Even more bizarre is that my case was extremely difficult for doctors to diagnose because it has such a huge variety of symptoms. Another interesting fact is that it can only be passed on by females because babies get their mitochondria from the mother during gestation. The only way that I was able to be diagnosed with a reasonable degree of certainty is with a fresh tissue sample from muscle. For that I had to travel to Cleveland where I underwent the operation at the Cleveland Clinic. The original sighting of any neural anomalies was in Seattle after a doctor took a second look at an MRI taken in Olympia where doctors had originally found nothing. A second MRI had revealed that the mass in the first MRI had grown from a hardly recognizable speck to the size of two AAA batteries side by side surrounding my brain-stem. By that point I was hardly able to walk, breathe, hear properly, speak or eat solid foods.It seemed hopeless to everyone but (spoiler alert!) I'm still alive!!

As my family and I reflect on my early childhood, there were signs that could have indicated that it had been affecting me for many years. I had many breathing issues that were misdiagnosed as asthma or being out of shape. I was trained to push myself but I was actually just killing myself faster as I pushed myself in sports and work. My dad has always been a great athlete and a hard worker so I naturally followed his example until I just couldn't take it anymore. The first significantly noticeable signs were in high-school. I just started to vomit every morning, once and without any warning or reasonable association with my environment. Some teachers started to supply me with a barf-bucket and I became a bit isolated. But my friends and everyone at Elma High School were just amazingly understanding. There were jokes but it was just good fun. It didn't hurt at first, it just was concerning. I became very skinny even though I was already super skinny to begin with. I went from 185lbes to 155lbs in a matter of a couple of months. At roughly 6'2", that's not a good weight. I still tried out for the soccer team as normal, but the try outs were impossible. I spent hours vomiting and trying not to fall over. I couldn't play that year, but I was still acknowledge which was a huge honor.

Eventually I was treated by a gastroenterologist which solved the vomiting problem for a while. I'll never forget what she said though; she was happy with the treatment's results but she said that there must be something bigger happening to cause such a bizarre problem. We were just happy that I was starting to gain weight and could hold food and drink down. It actually got so bad that I would vomit up to twelve times per day whether or not I had something in my stomach. Vomiting nothing is a horrible pain, doing it numerous times a day for several months is havoc on your body. As I improved, I was barely able to graduate and I walked at the ceremony with a precautionary barf cup.

The summer after graduation I worked at a whole-sale nursery/farm in the Willamette Valley. I pushed myself harder than I have ever pushed myself in my life. I worked hard to prove to myself that I could do a good job no matter the conditions. I couldn't sleep though, because of breathing issues. So I was lucky to get one or two hours of sleep per night. I would sometimes do hundreds of pushups, situps and swimming laps to make me tired enough to sleep. I was only making things worse. By August I had lost the muscle function of the left side of my face. My movements were amazingly slow and I could hardly speak. I drove home to Elma and was shortly there after admitted to the hospital for testing. I was given high dose steroids for treatments for things that I didn't have. I had many MRIs, CAT scans, Ultra Sounds, two batched spinal taps and numerous blood tests. My condition was getting worse and worse with no hope for answers until I was admitted to Seattle Children's Hospital where Dr. Senato and Dr. Richardson had dedicated a tremendous amount of effort in providing some answers. After it was diagnosed and a treatment was prescribed, I was told that I would be really lucky to live much longer; and if I didn't die, I would be lucky to regain the ability to walk. The months that followed were extremely hard, every day seemed to be my last and it was one of my most life altering times of my life. I saw who my family members are on a deep level. I saw such astonishing support from my community and I saw how amazing true neighbors can be. I couldn't have made it through everything without all of that support.

In bed all day, every day without the ability to breathe on my own, walk, eat, speak for more than fifteen minutes at a time. I wanted to fix it so I tried really hard, I forced myself to be mobile and I forced myself to study. I was soon walking multiple miles per day and reading on my own. I tried swimming and doing more dynamic exercises too. I got into better shape and started playing soccer again. I bought a computer, car and enrolled into SPSCC and started studying medical language in English and Spanish. This was against the doctors warnings but I couldn't take being in any kind of a slump. They said that stress could easily mean my demise. I took that into consideration then carried on. As a result I had further brain damage which seemed to have some odd affects on my memory. I think that most of my memory is now intact but its obviously hard to be certain.

Now I am doing much better, always improving. I have to use my C-pap machine most nights but I can go about  four or five days in a row without it. I still take my vitamin treatment along with heart burn medicine but its nothing significant. I'm healthier and stronger than ever before because I exercise and diet properly. I have to be sure to rest properly and keep my stress under control. Those two factors are absolutely the most essential. Nobody can tell that I have any kind of health issue just by looking at me and interacting with me, which was not at all the case in the beginning. I'm undergoing projects in my professional career that are on a global scale and that induce a lot of pressure physically, mentally and emotionally. But if I can manage it, then I can use this pressure to strengthen myself rather than let it hurt me. I have to focus on taking the negatives and using them  in a positive way such as motivation. I tend to highly resent those who see me as weak because of my condition. I wouldn't be who I am without it, it changed me. Feel sorry for me if I ever let it defeat me but so far I have had the reins this whole time.

I was hesitant to write this because it's such a huge and detailed subject. Also, more recently I have been less willing to talk about it. My mother has more detailed notes and documentation along with a journal that she kept during the really hard times. My memory is also arbitrarily spotty and clear so some parts may be completely forgotten. Regardless, feel free to message me about anything and I will be happy to answer as best I can.

Also, I want to mention the dedication and caring that was exhibited so nobly by Miles Zepp. He was an incredible example of what it means to truly care about your friends and neighbors. I miss Miles every day and would do anything to have him back with us. I think that the best way I can honor him is by trying to live as I saw he lived: he cared deeply, he worked hard and relentlessly without compromising, he had a genuine smile along with a servant's heart.