Up and down all the time
Your meds change a ton. Some of them will stay the same, but the Tacrolimus, which is the anti-rejection med, it goes up and down all the time. We have to go up to the hospital a lot for blood work, so that’s like a two hour drive for us. We were up at Children’s, like, two times a week for a while.
It was annoying, but now we’re going like every three months.
Eva, 13
Take the pills
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.
Anonymous
Side Effects
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.
Anonymous
If I get it done now I don’t have to do it later
Laura: It’s annoying, because, like, I’ll be out in the neighborhood and I’ll have to come in and do my nebulize treatment, and I just want to stay outside and be with my friends and my neighbors and having fun, whereas I have to come in and do medicine.
Mom: That’s only three times a week though. It’s not that big of a deal!
Interviewer: How do you get through it?
Laura: I’m just kind of like, “Well, if I get it done now I don’t have to do it later, and then I can come back out.” I mean, it’s a blessing and it’s a curse, because I want to do everything, but I have to limit myself.
Laura, 14 and mother
Those are like your vitamins
Obviously you have to take meds and stuff. That’s just part of your life. I mean, other people take meds – they take vitamins and stuff! Those are basically like your vitamins.
David, 15
We’re going to have to figure something else out
Alanna: I hate salt. Hate it.
Mom: That was because of being here.
Alanna: I had to take a salt pill. Ew.
Mom: Imagine, she had low sodium and we’re on the cardiac ICU unit – there’s no salt anywhere, like, not on the crackers, not on nothing! And they’re laughing saying, “You have to,” and it was so hard. It was either liquid or a pill, and she’s great at taking her pills. I can’t even – I’m bad when it comes to taking pills, she can just swallow a whole handful down at one time, and that pill she could not get down.
Alanna: I had to chew that. It was so gross.
Mom: And then they tried to put it in Gatorade, the liquid, so it’s like salt water. I mean, you can’t! And then we made the doctor try it. We made him taste it, and he went, “Oh God!” He didn’t make her take it after that. He said, “We’re going to have to figure something else out.” I’m like, “Please!”
Alanna, 15 and mother
I didn’t want to mess it up
I think being in the hospital and them putting me on a schedule helped a lot – like, wake me up, bathe me…And they used to have me interact and do the stuff too, like weigh myself and all that. So by the time I got out the hospital, I got used to it and could do it myself.
And just proving my mom over here wrong! Because she started to say, like everybody, “Oh, you’re going to start not taking your pills, you’re going to be missing everything…” And I didn’t want to ruin it! I just got a kidney, I didn’t want to mess it up. Because I didn’t want to go back to dialysis. I don’t want to go back to dialysis.
Isaiah, 17
The pills are always changing
My transplant meds my mom handles a little bit more, because the pills are always changing. It was easier with the needles and the mixing the medicine…I was better with that than I am with putting the pills in the little cases.
Jess, 18
There are definitely days when I forget
I do take my meds and I keep track of them, but there are definitely days when I forget.
CVS has these Mon, Tues, Wed, Thurs, Fri, Sat, Sun little pillbox things. Those help.
Katie, 19
Right now I don’t have any side effects
My meds have been pretty constant. Sometimes the Sirolimus will change: for a while, I was on 4 mg and now I’m on 6. That really depends just where the body’s at, it depends on what the Sirolimus level is, so if it’s low they adjust, and if it’s high they adjust it accordingly.
When I was younger, right after the transplant, I was on prednisone, and that had a lot of reactions: weight gain, excessive hair growth, stuff like that. But by eating healthy, I only gained 10 pounds at the time. Right now I don’t have any side effects, which is great.
Samantha, 22
Something you’re going to have to live with
Probably the most difficult thing is taking the medication, because that’s something you’re going to have to live with your entire life – in relation to college experience, making sure that you have your medication on a regular basis so you can take it wherever, and if you’re out, you don’t have to be worrying, like, “Oh my gosh, I need to get back!” Because the medication you also have to take every twelve hours, so having that be a set schedule.
Samantha, 22
Being Prepared
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.
Anonymous