THE MEDICATION ASPECT of my transplant was one of the scariest parts of the whole thing. Because it came at me sideways and hit me like an oncoming sideswipe by a massive SUV. Doosh doosh. You're going to have to take 20+ pills a day. Doosh doosh. They're going to suppress your immune system and you won't be able to leave the house for 3 months. Doosh doosh. They're going to give you an endless list of side effects, but we can't tell you exactly which medications cause what. Oh, and you will barely be able to swallow them for the first 6 months because you'll be in a constant step and repeat of nausea and other complications. But you gotta take em, they're lifesaving. I felt extremely nauseous for basically 6 months after transplant. I still have my moments, seven months in. It has been so brutal, it got to a point where I really thought that I'd never have a day without feeling sick. 'Oh yes, great, Darling Doctors,' I said, 'Can't wait, really looking forward to it -- so into this new life I've got and can't wait to keep all these pretty coloured pills straight in my shiny new plastic pill holder the size of my head.' No I didn't say that. I grimaced and nodded my head and swallowed the pills and then threw them back up.
I remember when the pharmacist came into my hospital room to give me a tutorial on all the medication I would be taking and I could barely keep my eyes open. He was such a sweet guy. I didn't understand anything he was saying. It was as if I had forgotten how to speak English altogether. I was so out of it that first time he came to speak to me, they had to set up a second tutorial to make sure I really understood. It was the same guy and this time I managed to keep my eyes open for him. But nothing really sunk in. So many pages upon pages of information and side effects and interactions. Then the main pharmacist came in right before I was discharged to show me some tricks of the trade, as it were, and teach me how to fill my pill-box. It was a whole new world and it truly felt insurmountable. I had no idea how I was going to keep them all straight nor how I would remember the dosage or what they were for.. Prograf, Prednisone, Myfortic, Dapsone, Omeprazole, Vitamin D, Calcium, Fluconazole, Valcyte, Bactrim, Magnesium, a multivitamin and baby aspirin. I had to memorize the dose of each one too? Were they aware that I wasn't quite sure what my name was anymore or where my ass was in relation to my elbow?
Let me also say, I was never into pharmaceuticals before my illness. Not that your average person is 'into' pharmaceuticals per se. But I love homeopathy and holistic medicine. I took various supplements for wellness in my old life and I liked to cure things by eating probiotics and using vegetables for medicine. I hadn't had a proper cold for 3 years because I had been taking Oil of Oregano regularly. I made my own tonics with turmeric and ginger. I was on one, in terms of the natural health train. And I still like to cure the common cold with natural remedies. I don't believe in the flu shot (although--at least for now--it is compulsory for me to get it, a girl can dream, right?). I was on the fence about vaccines for children and babies, I still am. I don't trust big pharma. None of us should really. And then my whole life got flipped upside down and I was forced to reassess and essentially go against my values and things I really believe in in order to stay alive. Some might say it's a small price to pay to be alive and well. But the thing is, I wasn't at first. I was very much half dead and not well at all. And I was pissed off (for a whole host of reasons) but also because I was taking so many pills and I could feel the chemicals coursing through my veins and it went against everything I believed in and I had to accept it. I had no control whatsoever.
At the very beginning, I would cry when taking my pills, it was so painful. It physically gave me pain to swallow my medication and I had no choice but to take them, because they kept me alive. And if I threw them up, I had to take them again because I couldn't miss a dose -- and that happened all the time at the very start. If this is something you're going through right now, I know you don't believe me, because I didn't believe it at ALL just a few months ago, but it starts to get better, slowly at first, and then all at once.
They ask you to memorise all your pills and in particular to familarise yourself with your immunosuppressants. The thing is, for me, is that I went into this ass-backwards and belly up. I didn't have any preparation for a liver transplant, in the way many people do. There were no pre-transplant workshops for me to put my mind at ease or to learn about how it might be. I went from a normal healthy 28 year old to knocking (loudly) on death's door to liver transplant recipient in a matter of 3 weeks. Wild. I remember going into the clinic for the first time after getting out of hospital and the Physician's Assistant, who took over my care once I was out of the hospital and who has taken wonderful care of me, but is also tough as nails and a no-bullshit woman from Brooklyn (with, I like to think, a heart of gold). She asked me to repeat all my medication I was taking back to her and the dosage of each one. There were SO MANY and the amounts were all SO varied. I said the wrong dosage for my Prograf at first (an immunosuppressant anti-rejection drug) and then I back-peddled and said 'Oh no I think it's 0.5mg, not 1mg'. She said 'Well, you really need to know what your medications are and what the dosage is.', in her matter-of-fact way (that I have since gotten very used to, and even grown to love. Ok that's putting it strongly. I've come to appreciate it). I burst into tears on the spot because I felt like I was doing it wrong, that I was supposed to have it all sussed out. Guess what: no one does. I never thought I would get a handle on the dosage, I never thought I'd be able to swallow the pills, I never thought I would stop throwing the pills up. But it got better in time, and now it's almost second nature and I can even shovel 5 pills into my mouth at once and get them down my gullet in a matter of seconds. It took me literally an hour of concentration to get through the torture in the first couple of months. Now I know the dose of every single one of my medications by heart, I know their names and I know what they're for. I really didn't think that would be possible at the time, but it is -- just like anything.
Even though I do forget to take my pills almost everyday. I have learned that alarms are extremely useful for this. I now have a surprisingly bad memory thanks to whatever it may be: medication, anesthesia or just your bog standard run of the mill trauma of a near death experience and multiple surgeries may have incurred. Luckily it's not on purpose, the forgetting. I have plenty of reasons to want to keep on going and I'm not going to stop now.
More soon about how your shit gets really fucked up from all these meds, especially if you're a grapefruit lover. But who is these days besides your grandmother, right?