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My Weekly Journal – 11/12 Through 11/18
Monday, November 12, Through Sunday, November 18 – With everything that I had to do this week, and even though my plate may have been full, this week flew by like clockwork and everything fell in its place. I currently manage five different rare disease forums for BioNews Services, and we decided this week, that we would add another 4 forums to the ones that we already have. Currently, we have forums for Spinal Muscular Atrophy, Multiple Sclerosis, Parkinson’s Disease, Pulmonary Hypertension and Pulmonary Fibrosis. Beginning in January 2019, we are adding Cystic Fibrosis, Muscular Dystrophy, Friedreich’s Ataxia and Lou Gehrig’s Disease, otherwise known as ALS. With the addition of these 4 forums, BioNews Services will have one of the best run community information discussion boards that I’ve ever seen. Working with this company has given me an opportunity to not only work with some great people, it’s also allowed me the opportunity to broaden my knowledge with respect to these individual rare diseases. Even though my job responsibilities are growing exponentially each and every day, I count my blessings that I’ve been given a chance to be the Forums Director for this great company. Along with everything that is happening with my job, I received my 3rd maintenance dose injection of Spinraza at U.T. Southwestern Medical Center’s William P. Clements University Hospital on Monday, November 12. To say that my week is been busy, would be an understatement.When I woke up on Monday morning, I could tell that my body was craving the Spinraza that it was about to receive. Waiting 4 months in between treatments can sometimes be a challenge, because I think I can honestly feel that my body is needing this injection as the dates get closer. It’s not that I become dramatically weaker, but I can tell a slight decline in my energy level and my strength. When I got to the hospital at about 11 AM CST, they took me back to my room and began doing all of the pre-testing that they normally do. After taking a urine sample and doing all of the blood work necessary, I laid in bed until 1:30 PM. Earlier, I had met the student doctor who was scheduled to perform my procedure. He came into my room and introduced himself to me and we went over the procedure. I know the doctors are supposed to tell me exactly what’s going to happen, but after going through as many injections as I have, it’s almost like listening to a recorder. After he finished telling me what was going to happen during the procedure, he left my room and shortly after, the technician came into my room and took me to the fluoroscopy suite. After the technician and a couple of nurses transferred me from my bed to the fluoroscopy table and got be properly positioned, Dr. Stehl came into the room. Dr. Stehl had been the doctor that had overseen my first two maintenance dose injections back in March and July of this year. Even though his students were the ones who performed my procedures, Dr. Stehl was the attending physician and he supervised everything that was happening to make sure that everything was being done properly. When Dr. Stehl came into the fluoroscopy suite, he told me that his student doctor was not going to be able to perform my procedure because he had been called away to handle another medical situation that had come up. Dr. Stehl told me that he would be doing my procedure, which was fine with me. After taking a few fluoroscopic images of my back, Dr. Stehl marked my back with a pen and began the procedure. After numbing my back with a shot of lidocaine, Dr. Stehl inserted the needle directly into my central nervous system without any difficulties. He immediately began receiving cerebral spinal fluid (CSF), and withdrew approximately 5 mL of CSF out of my back. After removing 5 mL of CSF, he then instructed the nurse to bring him the vial of Spinraza and he loaded the syringe with 5 mL of Spinraza. After this, Dr. Stehl injected the Spinraza into my central nervous system and after the injection was done, he removed the needle and put a Band-Aid on my back. The technician and the nurses then transferred me from the fluoroscopy table back to my bed and the technician took me back to my room where I was to lay flat on my back for one hour. After an hour of laying on my back, the nurses came into the room and transferred me from my bed to my wheelchair and I was allowed to go home. Since I had experienced migraine headaches and nausea during my first two maintenance dose injections, I went by Starbucks and bought a large cup of coffee and drink that immediately after I left the hospital. This dose of caffeine kept me from getting a headache during the day and I experienced no postsurgical pain in my back. Other than a nerve that they hit during my first maintenance dose injection in March earlier this year, each of my maintenance dose injections have run smoothly and we have had no complications.On Thursday, when I went to workout, Laura was on vacation, so her physical therapy assistant, (PTA), Emily and Emily’s student physical therapist, Kylie worked out with me. Emily and Kylie transferred me for my wheelchair to the therapy table and we did all of the exercises on my hamstrings, quadriceps, muscles in my calves and all of my stretching exercises in my ankles, feet and toes. Even though my feet and my toes are extremely sensitive, I’m slowly getting used to these workouts and I’m finding that it’s not as uncomfortable as it used to be when we began over a month ago. I am in no way saying that these exercises are a cakewalk, but I am thankful that they are becoming more bearable as time goes on. After working on my legs, Emily began working the muscles in my neck. Emily placed the palms of her hands under my head with her fingers stretched out to where they reached the middle part of my neck and she began manipulating these muscles to loosen them up. Once these muscles were loose, she then began rotating my neck from side to side working on the range of motion with regards to the rotation of my head. We then worked on side bending which improves the way that I can bend my head toward my shoulders from left to right. These exercises are not painful at all. As a matter of fact, after we finish doing these exercises, my neck feels better for the entire day. After we finished the exercises in my neck, Emily and Kylie transferred me back from the therapy table to my wheelchair and Emily and I finished my exercises by using the resistance band on my neck. As I said in earlier journal entries, the muscle that controls my head from falling forward is the weakest muscle in my neck. We are now using the green resistance band on all of my neck exercises and I feel that my neck is getting stronger each and every week. Laura will return next week and since Thanksgiving is on Thursday, I am scheduled to go back on Tuesday for my next workout session with Laura.In this week’s video, I discuss my 3rd maintenance dose injection of Spinraza that occurred on Monday, November 12. I explain exactly what they did to me and for me while at the hospital for my procedure and I go into great detail about exactly what happened during the procedure itself. I also explain the topic that I will be discussing next week in my weekly video. There are 2 words floating around the SMA community that are causing a lot of controversy for those of us going through our procedures. I tell everyone that I’m going to define the differences between the word “cure”, and the word “treatment”, and I explain how I’m going to define these words so that those of us going through our procedures will all be on the same page. Click HERE to view my video.I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. Thank you to all of those who said a prayer for me during my last procedure. God bless you and I’ll see you next Sunday. -
1 Reply
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Glad the injection went well! And yep, we definitely have a lot going on here at BioNews. Happy to have you on board!
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