2018 year in review...

Finally, I'm doing my year in review. Might be a week late, but I wanted you guys to save the best for last. You're welcome. Wow! What a roller coaster year. 

I might as well start at the beginning. By the time 2018 rolled around, I was less than 48 hours away from a hospital stay. I was lucky to get out by then, so I had to take my New Years eve easy. I had a great time hanging out with some friends at my house. Once I fully recovered, January and February went pretty well including a trip to Texas for my birthday. it was a great trip because I got to take Ranger with me. Boy, that dog loved car rides. 

Now came March. The roller coaster began. In the beginning of the month, I finally got an appointment to begin the Spinraza treatment. A moment I'd waited 33 years for. But my excitement was soon extinguished. I ended up at the hospital. First I went for pneumonia and was out in 3 days. Only to return 2 days later. This one was really scary. I had spent all day not being able to swallow anything. I couldn’t even swallow my saliva. This had never happened to me. For the first time in a long time, maybe ever- I really thought this was it. Matter of fact, I had my Mom call my siblings so they could all come and say goodbye. Thankfully after a day of TPN, I was able to regain my strength and swallow again. Now I was getting really close to my appointment up in Kansas City for Spinraza It was imperative for me to get discharged in time to make it to Kansas City. Somehow, I did it. But I was really not in any condition to get out- let lone travel. None the less, I made the appointment basically running my bi-pap the entire time. 

Now the next 4 months were the ,longest 4 months of my life. Why you ask? Well, in order to get Spinraza, you have to go through a lot of hoops. Thats what I did these 4 months. Go through every hoop they put in front of me. The entire time never getting back to full strength, which meant I took my bi-pap everywhere I went. Never knowing when I might need it. This really has been the worst part of the year for me. As I haven't been able to do the things I;m use to such as travel to baseball games, go to concerts, even coach my softball team. I did do softball none the less, unfortunately, I missed at least 30% of the games including a game that probably cost us the championship. Yeah, I have a great softball team now and if I hadn’t made Rush miss a game, we probably would’ve been champions. None the less, 2nd is pretty cool and the whole group is back this year so we can go get that championship. (I might be getting a little cocky, but I'm ok with that- I believe in my team).

Finally in July, I got the news of my life. I have been cleared to begin Spinraza. My first dose would be given to me in the middle of August. After I hung up the phone, I had tears in my eyes. I never expected to receive treatments for SMA in my lifetime. Its not a cure but its a step in the right direction. Now before I continue, I do want to take time out to really thank Christi who works with Biogen as a liaison. All her hard work made this all a reality. I could never thank her enough. 

Alright finally August is here. to say I was a nervous wreck would be an understatement. I was excited more than anything but you always have nerves when you're entering an unknown. Would they be able to give me the injection, would it help(I'm really tired of my bi-pap), and would it be painful? If you are lucky enough to receive the injection at KU Med in Kansas City, you have nothing to worry about. Everybody in interventional radiology make up the dream team. A little back ground, the injections are done as a spinal tap. I am not an ordinary human being. My spine is held together by metal rods and wire. Even with all this I am still one bent individual. Not many people could find my spinal cord, let alone stick a needle of that caliber in it. For these Doctors, it is a non-issue. Not to mention it is almost pain free. By the time you add in the nurses and aides who help ease the patients and inform them of everything, they truly are the dream team of the medical field. Not to mention they really do care and being a patient as much as I have been, that means a lot. 

Dose one was great, my only setback was a spina headache that they warned me about, I did as they directed and instantly the headache was gone. Dose 2 had zero setbacks, and I was really seeing the progress. Then came Pneumonia. Like an idiot, I tried to rush it so I wouldn’t miss my third dose. This mistake almost cost me my life. After a day being out of the hospital, I developed my swallowing problem again. I got readmitted and started to receive TPN, but this time they wouldn’t let me out until I had finished my whole course of antibiotics. I agreed with that since I had already missed my injection date, I might as well get healthy. This is wheee I made my fatal flaw. I got lazy and decided to keep receiving TPN instead of getting up and drinking my normal amounts. I found out my body can get too much of a good thing. By day 4 I was sicker than a dog. Day 5 and 6 went by without any improvements. I was tired of being at the hospital so I decided to look into hospice care. Once I found out that if I received hospice, I would no longer get Spinraza, I decided on a different route. I got my nurse to disconnect the TPN, and 6 hours later, I was starting to feel better. The next morning, I had to convince the Doctor to let me out of that hospital without Hospice. Of course, it was an argument but we prevailed. 

Finally, I was feeling better and ready to do another dose. Only problem was-when you miss one dose they take you off the schedule. I was not aware of this rule. So one trip to KC was a waste. But right away, I got to witness again how great this dream team is. By the time we were out of the Kansas City area, I was scheduled for my 3rd and 4th injections. 

As you can tell, there were highs and lows. I am now past my loading doses and am looking forward to my 1st maintenance injection, which should be at the beginning of March. Now I have seen tons of improvements. My drinking has increased by 33%, everyone says I'm easier to understand, and most importantly, my bi-pap use has gotten less. I’m not where I want to be yet, but I feel I'm closer and after another dose or 2 I should be off the bi-pap full time during the day. 

I can’t do a year in review without some sports talk. My Jayhawks made the Final 4 last year, that was a surprise, and they returned a good team this year who right now are having problems but I trust Self to right the ship. My Rangers sucked last year and it looks like they will suck again this year. Hopefully though, this year I can make it down to a couple games. It pains me that last year I lost my streak of 11 straight years of catching at least one Ranger game. And since I've been stuck at home a lot, I picked up Hockey again, go Avs! 

As far as family and friends, nothing really new to report. I’m blessed to have the best support group around me as I could ask for. Everybody helps me out when I need it and lets me fail when I need to. That last part may sound weird but as I grow older and I see more millennials I thank God that my parents let me fail some. It is important to discover the person you are when you are facing adversaries. Cuz, news flash -- life ain’t perfect! If it wasn’t for such a great support system, I would have died in March or September without a doubt. I love you guys for giving me a reason to live. I promise I will push through this adversity (aka: bi-pap usage) and be back stronger than ever and start getting back to life. Casinos- be ready to lose money! 

That was for the most part, my year in a nutshell. Wasn’t a whole lot of excitement, but I will make up for it this year. Now for my New Years resolutions, 1. a kinder gentler Casey, I have been told I run people off. So Im working on it. 2. More blogs, but with this will come basically editorials. My life isn’t interesting so if I'm going to write, it will be about the world around us. Crap, that might hurt resolution #1. 3. Eat solid foods again. I’m not there yet, but I know I will get there. Watch out cake-- you’re going down (my throat). 

My next blog will be next week and it might be a little controversial so hope everybody enjoyed this and hope I don’t lose any readers.