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Medications
If you have to take potassium, swallow it with applesauce because the pills are really big. Also, just take them quickly because if you make a big thing out of it, it’s harder to take them. And just think that even if you don’t want to take the pills, they’re making you better. Just think of it that way, not like you’re taking these really annoying pills, even though they are annoying.
Prednisone made me hungry all the time and I was so afraid of gaining weight. So, when I was hungry, instead of the junk stuff, I would have the fruits and vegetables. Every once in a while I would go pig out, and that kind of scared me. I was also afraid of the facial hair- having a uni-brow and all that stuff. So that was a big thing.
I was on a lot of medications after transplant. The transplant coordinator wanted to make sure that I knew what all of the medicines’ names were, how many I needed a day, and how many times a day I take them, otherwise it could be a big problem. That was really one of the hardest things, because you have so many. At home I had this box for each day. You see people who only take two pills a day in the morning and the afternoon and have their little pillbox, but I took seven in the morning and in the afternoon and in the evening and before I went to bed. When I went home I was on all of this medicine, and I had to care for myself.
I got really like- “cuckoo” was how my family described it. Because I was on such a high dose of steroids that in the same period I could be laughing and talking and then I’d just cry and then I would laugh again. I had to eat a lot. And I didn’t sleep very well; I was always up because I wanted to do things. I had so much energy; I would probably sleep just two hours a day and then I’d be up running around the house or playing on the computer. Everyone said, “You have to sleep,” and I would say, “I can’t sleep.” I wanted to go run the marathon. It was an adjustment. I got really puffy. I didn’t see it happening myself but now if I look back at pictures I almost don’t recognize myself. But that only lasted three or four months. I have a little more weight on me now but I needed it; I was really skinny. Plus, I had a little bit more hair growth, and my hair came in darker. I used to have light blond hair and I noticed it coming in darker. I didn’t want to keep dying it so I just cut it. And my hair is so thick now, which I love. A little more waxing, but that’s okay- more visits to the beauty parlor. But you are just so happy to breathe that you don’t care.
At first, taking my meds was the hardest thing. Before my transplant I didn’t have to take any meds for any reason and it was kind of hard having to get used to taking them twice a day and for the rest of my life. Now I take anti-rejection meds so my heart won’t reject my body- immunosuppressant drugs. And blood thinners, blood pressure drugs. I also take prednisone, but it gives me a moon face. My advice for other people about transplant medications is to just to take your meds all the time and don’t mess up like I did. It’s been four years since I had my transplant- and throughout the years I’ve been running away and acting the fool. And when I would run away sometimes I would leave my meds at my mom’s house or wherever I was. I wasn’t thinking then, and wasn’t making the right choices. Now that I’m listed for a second transplant, I’m feeling different- I’m not scared about it or anything yet. If it’s something I need to survive, I might as well get it. I’m not scared or anything because I know what it’s like already. I hope everything goes well with this transplant. If you’re going to have a heart transplant, don’t be scared. Just be strong- it’s going to be okay. It will be all right. The Lord is with you.
Right after the transplant, I was given high doses of Prednisone, which cause puffiness. But after a couple of months, when they started cutting that down, the puffiness went away. People complain about their weight on Prednisone, but I’d rather be overweight than underweight. When I was on dialysis, I lost twenty-five pounds, and people told me that I looked terrible; now they say I look a lot healthier. So the side effects aren’t really a big thing. That is the only one that I can think of; there might be others, but I’ve never experienced them.
Medicine-wise, I can’t just take a regular cough medicine if I have a cold or something. I can take an over the counter one, but it has to be specific; I can’t just take Niquil. Medicines can interact occasionally.
I’ve been able to tolerate most of my medicines. Some people can’t tolerate cyclosporine and have to look into other types of antibiotics. My iron level is low, because I don’t have a great appetite for stuff. Ever since I was little, I have had to take calcium. It takes a while to get used to what you’re taking. I set it out for a whole day as a reminder: morning, afternoon, and evening pillboxes. As I started to get out more, I knew off the top of my head what to take.
If I’m going away, I’ll take everything. I pack my entire medicine cabinet with me. I’ll bring the right amount for a week, but I’ll also bring the bottles in case there’s not enough. I went to Florida and didn’t have the right amount of medicine with me, so I had to have it FedEx-ed to me. I learned to bring everything after that.
The medications are just part of my life. There are times that I think, “I’m so tired. Man, do I have to take these?” But usually it’s not too bad. It is just part of my life, not horrible. I take pills; liquids I find are worse because they have the nasty taste. Pills you can just chug with water, so they’re gone really soon.
When I was sick I was on all kinds of medications, and they changed all the time. A lot of times I was so sick that it was hard to take medications because my stomach wouldn’t like them and I ended up throwing them back up. It was hard to take so many different medications and have to always take pills morning and night, or sometimes three times a day. It was a pain in the neck when I was sick, but I figured if that’s what I’ve got to do, that’s what I’ve got to do. So I got through it. And now that I’m better I take medications twice a day, in the morning and at night. It’s not bad all; it’s really not a big deal after what I went through to take a few medications in the morning and then a few at night.
My advice would be to take them on time as directed by the doctor, and to be as accurate as possible. I take my medications every day, as close to on time as possible. Now it’s like clockwork: I wake up and take my medication- it’s like a system I have. The important thing to do is to take your medications on time, as directed. Right after my transplant I’d always have a book, and I typed everything out on the computer and had a little chart of when to take everything. In the beginning it’s good to have something written down or something typed out on the computer, just to be very organized about it. Now that I’m three years out of transplant I know exactly what pill to take at what time. I know it by heart, so it gets to be easier as time goes on.
You have to take your medication; it’s what keeps your liver from being rejected in your body. Your body doesn’t recognize the liver that you have, and will automatically end up rejecting it if you don’t take them. And if you don’t take your medications you can end up in the hospital for rejection. So it is very important that the medication be taken every day. I put my medication in the kitchen cabinet. When I had a big list of about twenty pills I needed to take, I would have the list posted on the refrigerator, and if I ever went on a trip, I would make sure that I packed enough and put them in a zip-lock bag to take with me.
The hardest part is when you’re taking a lot of medicines. When you’re really sick and taking 40 pills a day it’s really hard. You can get kind of sick of it sometimes. If you have to take liquid medication that tastes really bad, that’s hard too. And sometimes I forget to take my medicine. I only forget a few times a year, and even then, I take it later. The key to staying healthy is taking your medications. Always, always take them, no matter how many times a day. You always have to take your medicine because it’s very, very important.
Always try to remember that your energy pills keep you alive. Just try not to forget, because if you don’t take them for a long time, you’ll lose your kidney. If you want to live, keep taking your pills.
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Medication Advice
Prednisone
Taking the Medications
Steroids
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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