Moyamoya disease awareness

My name is Marcus Kiyomura and at the age of 33 I survived a stroke and was diagnosed with Moyamoya disease. Moyamoya literally translated from Japanese means "puff of smoke". It's a rare brain disease that hardens the arteries of the brain, limiting blood flow to the brain and leaving the individual prone to strokes. I was first diagnosed with Moyamoya disease after I survived a stroke in November of 2017. I was attending a vocational school full time during the day and working evenings and weekends to pay bills and make ends meet. Clearly I had reached my physical limits, a tipping point if you will (if not even a literal breaking point). On the Tuesday before Thanksgiving I went into surgery to stop the bleeding that was caused by the stroke. The technical medical term for this procedure is called an aneurysm clipping. Once the surgery was completed I was transferred to a skilled nursing facility to begin rehabilitation. I was transferred to another hospital where I began acute rehab that involved intense daily physical therapy, occupational therapy sessions and the occasional recreational therapy during the evenings and on Sundays. My stay at this hospital corresponded with the holiday season and I wasn't discharged from the hospital until the 22nd of December, just in time to spend Christmas with family. At the end of February my grandmother who had been diagnosed with Alzheimer's back in 2010 passed away the week of Chinese New year's. She was over 98 years old and will be deeply missed. As a result of the stroke and upcoming corrective surgeries to treat the Moyamoya, I took an extended leave of absence from school and obviously was not allowed to work. This resulted in my car getting repossessed at the end of March. The repossession of my car combined with the recent loss of my grandmother sent me into a dangerous downward spiral of depression. After consulting with my family nurse practitioner (FNP) and a psychiatrist I made the decision to try using a mood stabilizer to help deal with my depression and anxiety. My first of 2 corrective surgeries to treat my Moyamoya took place at the end of April. I was instructed to take all of my medications up until the day of surgery. Following the surgery, being on high levels of pain medications (mostly opiates), and having a long history of chronic insomnia, I had begun to display withdrawal symptoms from my other prescribed medications. I was severely sleep deprived and showing signs of high irritability, anxiety, intense abdominal pains that resulted in sever constipation and an inability to urinate (forcing me to use catheters to urinate contributing to my pain, discomfort, frustration and irritability. I was becoming so frustrated and angered that my rage resulted in me being 5150ed because I literally began to tear out and damage medical equipment that was attached to the wall. For those of you not familiar with the term 5150, it is the code number used in the state of California to hold an individual for psychiatric evaluation for 1-3 days because they are at risk of harming themselves or others. This can be upgraded to a 5250 which can extend the hold to up to 2 weeks if necessary. After being given a sedative and catching up on some much needed sleep I again consulted with several therapists and psychiatrists in the hospital and was prescribed a new regiment of meds to help me maintain my sanity, manage my pain and prevent me from causing further damage to the hospital or possible injury to people around me. I had my surgery on a Tuesday and was discharged from the hospital by the next Friday afternoon. As of this moment. The 2nd Moyamoya corrective surgery is scheduled for early May. The reason there needs to be 2 separate surgeries is because there are 2 halves of the brain that are affected y the Moyamoya. The first one was performed on the right side of my brain and therefore the second will obviously be on the left. This procedure is known as a craniotomy to perform an arterial bypass, and because it's on the left side of my brain there is a higher risk of the surgery affecting my speech. There's a good chance your average person doesn't know what a craniotomy is nor an arterial bypass. So I'm going to try to explain it and how it is used to treat Moyamoya. Basically the surgical team needs to cut out a portion of my skull to access the brain so that they can lay fresh blood vessels onto my brain so that my brain can grow healthy veins on its own. It is important post surgery to regulate a higher than normal heart rate so that fresh blood can be pumped to the brain and promote profusion of the new blood vessels. Here is a link to a video that I believe is similar to the procedure that I had done on my right side and will have completed soon on my left. https://youtu.be/eVHvvuJbnMU Once the third and final surgery is completed this next week I will be back to update my story. Until then thank you for all your well wishes and thoughts and prayers. I would like to send out a special thanks to my family and friends who have been helping me with driving to and from appointments, shopping, and helping me get out of the house for a variety of recreational therapy options that would be near impossible on my own. Another special thank you goes out to my friend Courtney for being the first to donate to my campaign in the amount of $100. This donation will be used to purchase a more accurate blood pressure monitor, since the original one I purchased proved to be less accurate and not as helpful given my needs and circumstance.