- 6 hour+ IV of Amphoteracin B and sodium chloride each night for 7 weeks
When I was released from Yale’s care on June 11, 2012 I had to continue my treatment of Amphoteracin B intravenously. Amphoteracin B, is used to treat serious, life-threatening fungal infections, like the invasive aspergellus that was discovered in my brain post-liver transplant. Walgreens delivered this piece of you-know-what, retro-looking machine where it’s prime days were clearly back in the early 1980’s. So for 6+ hours/night (more like over 7 hours/night, I was hooked up to this god-awful machine that I named “Baxter” (the bastard). My treatment, for the most part was administered predominantly by my grandfather (whom mind you, has absolutely no medical training), he was raised on a farm in Canada and made it through the sixth grade. Not exactly a PhD in medicine. Awesome.
In an attempt to combat the extremely rare, and life-threatening infection in my brain (invasive aspergellus), my only option was to undergo a very aggressive antifungal treatment both intravenously and in pill form. Each day I took 12 pills/day of Voraconizaole, and in the evening, I was hooked up to that very out-dated IV machine, “Baxer,” for over six hours/day receiving the very undesirable Amphoteracin B pumping through my veins. Not only was it “Amphoterribile” I went on to call it, “Amphoterrorist” because it felt much like medical terrorism. The Ampho is probably not like any other IV you may be familiar to; it is very toxic and most people have a lot of difficulty tolerating Ampho and it’s side-effects.
There was somewhat a degree of stress and pressure lying in the Ampho treatment, because if it did not do its job, or if I was unable to tolerate it, then the end result was not favorable. Then you have to go on and consider the fact that my grandfather and I are by no means registered nurses (even though after this experience we are on our way). We have no prior medical “experience” and when you really think about it, that is a quite a bit of pressure to be given the responsibility to properly and accurately administer this IV, where mistakes could result to serious, serious consequences to my health, as serious as death.
When my family and I were first getting acquainted to hooking me up to “Baxter,” it was an utter disaster. The very first night home from the hospital, the visiting nurse came to show my family and I how to hook-me up to the machine. She didn’t leave until after 1:00 am and my grandfather stayed up until 3:00 am, five hours past his regular bed-time. I was in-and-out of sleep while the nurse was trying to hook-me up and give my grandparents the tutorial for what they would be having to do from here on out. Instead of doing a simple step-by-step visual she got us all so confused. When I say confused, I mean really, really confused. She herself was even became somewhat confused because the machine was so out-dated and complicated by poor instructions. Luckily, I have several family members nearby who are RN’s so they were able to come over several times in the first couple of weeks to get me familiar with the IV machine. The nurses in my family taught my grandfather how to properly set up “Baxter”, but even then, we still had our daily troubles with that obnoxious machine.
- My grandfather, Poppy Emilio, had to learn how to work my IV of Amphoteracin B at-home each night.
My Poppy Emilio is a very hands-on, project kind of man, so when the IV came home with me, I think he saw it as a new project to keep him occupied. He was pretty much my nurse at home. It was cute how Poppy stepped up to the role. Every time he would flush out the line, when he was testing it to get the air out, he would pull the syringe back a little too far, and then when he pushed the syringe forward, the sodium chloride would shoot out of the tube quite a distance, and Poppy would go, “Ooops” and we would both giggle and I would say something like, “Woah, that was a good one!” My grandmother, Mum, would roll her eyes back and give Poppy this look that pretty much said, “you ass.” For some reason I found this pretty hysterical, and so then each time Poppy was flushing my line he would do this, I think just to make me laugh. He of course, would be laughing too and my grandma would just be shaking her head at both of us.
Poppy and I were starting to think we know how to work this damned machine, but just when we thought we had it all figured out, something would happen. Every. Single. Damn. Day! Poppy is a very smart man, he can build and fix almost anything including a house, so I’m thinking, sure he can work this IV machine, no problemo. Well, maybe not. That machine had all of us swearing up-and-down every single day of the seven weeks that I was hooked up to it. “Baxter the Bastard” is what I ended up calling it. Even though I will say “Baxter” was a big ole’ pain in the ass, I definitely bonded with Poppy Emilio while I was on the IV since we spent so much time together swearing at it.
The visual directions were on “Baxter” were very misleading, and even though we were shown on more than one occasion to work the IV machine, I don’t know how many times we still plugged the tubing into the machine in the wrong direction. Once I thought I was going to have a heart attack, we had it hooked up, I look over 10 seconds later, and I’m like “WHY is there BLOOD coming up the tube!!” Yeah, the picture on the machine is totally deceiving, it makes it appear like it is going in the opposite way that it should be going, and so instead of dripping my antifungal treatment in, it was sucking my blood up. I think it took several weeks for us to get that down without any mistakes, but after a few weeks under our belt, Poppy was a champ at working my IV, and a few weeks after that, I was doing it all alone by-myself (Nurse Moski in the hizzy, what, what!)
- When we first were getting used to setting up the IV on our own, we made mistakes like the one shown above every single day.
During my treatment hours, I first received sodium chloride intravenously for two hours to ensure that I was hydrated, two hours of the Amphoteracin B, and then two more hours of hydration to flush out the toxins. At this point in time I was also having to drink a minimum of three liters of water/day! So add up the three bags of fluid/medication I was getting pumped with three more liters of water and you can imagine I spent a lot of time wheeling my way to the bathroom to pee. On top of that I was getting up to pee a minimum of 5 times in the middle of the night. If you include all of the time to switch between fluid and medication back to fluid, it was taking seven hours or more a night when we were first learning how to work the machine since we had so much difficulty. Seven hours a day, seven days a week. And you wonder why I called it “Baxter the Bastard.”
Each night before I started the Ampho treatment I had to take one Benedryl and two Tylenols (regular strength because since I have a new liver, I am limited on amount of acetaminophen I can take). Why did I have to take these before taking a medication? Because the Ampho is a monster of a drug. It is often referred to as having “Shake and Bake” symptoms for its shaking chills and fever, nausea, and vomiting.
“Amphotericin B is well known for its severe and potentially lethal side-effects. Very often, a serious acute reaction after the infusion (1 to 3 hours later) is noted, consisting of high fever, shaking chills, hypotension, anorexia, nausea, vomiting, headache, dyspnea and tachypnea, drowsiness, and generalized weakness. (“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
From mid-June through the first week of August, I was on the ampho at-home. I was only on it for so long, because I surprisingly tolerated the drug so well. Even though my body was “tolerating” it, there were plenty of horrible side-effects that I do not miss for even one second. For instance, it was summertime, 80-90 degrees outside and II was usually wrapped up in several blankets and still shaking because I was so cold. My body was aching, I was in a completely drowsy in a fog, in-and-out of sleep usually woken up for dinner that I could hardly even eat. I had absolutely no appetite but would try to eat at least half of my plate just because I knew I had to. I was drinking over 3 L of water a day, plus being pumped with two bags of sodium chloride and one bag of ampho each night, so there was not much room for food. Add on being extremely weak and utterly exhausted, it was a chore to do simple, minor things like going to the bathroom. Stairs? Ha. I couldn’t go up-or-down more than three stairs for over a month.
“Organ damage is also distressingly common, and patients who are dying of a systemic fungal infection can suddenly find themselves dying instead of kidney or liver failure.” (“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
The ampho treatment was no guaranteed fix, and cast aside the side-effects it was having on my body externally, it was also doing notable damage to my body internally. Ampho is a toxin, so it’s main function was to terminate the aspergellus, but mind you, it is still a toxin, so while it was killing the fungus in my brain, it was also damaging my kidneys. I had to get bloodwork 1-2 times per week in my early weeks of discharge to closely monitor my blood levels. While I was being treated on the Ampho, my kidney numbers began to steadily climb, as expected. The question for docs day-in-and-day out was, we have to get the fungus out of there, but how much Ampho is necessary to kill the fungus yet not enough to cause an even worse threat on the kidneys? Living with the aspergellus in my brain, even a tiny little bit, is and was not an option at all. It is fatal; it had to be gone. The kidneys, you can compromise their function somewhat in order to purposefully be treated with the Ampho, but my docs had to closely monitor, and make sure it wasn’t causing my kidneys to reach toxic levels. Finally, after about seven weeks on the Ampho, my doctors finally came to agreement that was enough of it to my body, and from there-on-out we would solely rely on the Voroconazole to do it’s thing and fight the remaining little bit of the infection.
Describing Amphoteracin B as “awful” is an understatement in my opinion. I wouldn’t wish that treatment on my worst enemy. It was what I had to do though. Even though it made me completely and utterly miserable for 6-7 hours a night, I sucked up all of my hatred for it, put my game face on, and got through it. The day the visiting nurse came to take the IV out of my arm and to stop the treatment was one of the most exciting days in my life. Even though I was really weak, you can be damn sure I found the strength to roll that thing outside and down the two front steps and put it in the grass by the drive-way so as soon as they visiting nurse pulled up, I was ready to shove that thing in the car. Yup. She was laughing and said, “You’re ready to get rid of this huh?” I was like, “You better believe it, get it out of here, I never want to see that thing again!”
It was so harsh and cruel on my body, but yet was necessary to saving my life. Dear Ampho, thanks for saving my life, but man, I really hated you and I hope we never meet again! While I’m pretty sure it is safe to say you probably never in your life have to go through the “Amphoterrorist” treatment like I did, I’m sure there is something in everyone’s lives that that just don’t want to do, or hate doing. You’re not going to be able to escape bad situations all of the time, but what you can control is your attitude. While Baxter was quite the bastard, and while I did feel like I was enduring medical terrorism, I am thankful for what it did for me physically and mentally. Physically, it did a great job of getting rid of the infection in my brain, that I wouldn’t have been able to live with. Mentally, this just added one more thing to my list of bad ass accomplishments. Liver transplant. Check. Brain Surgery. Check. Another brain surgery. Check. Eight weeks of Amphoteracin. Check. The killer is it hasn’t even been a year yet? And I’m healthier than ever! I just recently accomplished a 41-minute interval kick-ass workout and walked four miles yesterday! That is a little bit crazy to me considering the previous June I had to use a walker and couldn’t walk up or down a flight of stairs. It is hard to believe, even for myself, but what I can say is just believe you can do anything. Visualize it, see it in your head, and guess what? It is possible. Look at me. I’m a breathing, living, walking example that miracles are possible. They are not just going to show up at your door though. You might be presented with a miracle of your own one day, but everything about it isn’t going to come easy, you are going to have to grind, and work hard, but I promise it will all be worth it, you just have to believe!
“I am strong because I have been weak. I am beautiful because I know my flaws. I am a lover because I am a fighter. I am fearless because I have been afraid. I am wise because I have been foolish. And I can laugh because I’ve known sadness.” ~Unknown
- March 9, 2013. Healthy, happy, and hopeful!
Just Say Mo Foundation 