"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
My calves started hurting again, so I took 2 Tylenol to deal with the pain. It must be from the workouts.
Actually, it’s surprising that I don’t have these leg pains after every workout. Considering how bad it was last year (I was almost bedridden), I’m glad that my legs got stronger.
I call today a success!
Remember December 12, 2018, when the G-tube doctor told me I needed to gain ten pounds in three months?
I have gained ten pounds!
I told the doctor that I don’t think the medication need me feel more of an appetite, so I’m going to stop taking the Periactin (Cyproheptadine).
My mom is still a little nervous (and I am too! March 26, 2019) about pulling it out so we’ll wait until June. During June we’ll pull out the G-tube for good!
Since I have had the G-tube for almost my entire life, it’s most likely the hole won’t close up on its own. We might need stitches to close up the hole for good.
Also, when we pull the G-tube out, the hole will be leaking for a few days. I will be dripping everywhere, so I predict a big problem.
Oh well, we’ll cross that bridge when we get there.
When I came in to see my oncologist, he drank a jar of pee.
“April fools!” he shouted. “It’s actually Apple juice.”
I’m going to miss him. He’s going to retire on June 14, 2019. That means I’ll be switching oncologists.
Before you ask, I have an oncologist because I take a chemotherapy drug. Gleevec, the miracle drug used to treat my hypereosinophilic syndrome, is usually used for AML leukemia.
He had the idea to stop taking Gleevec at my last appointment (October 16, 2018).
However, since Gleevec isn’t hurting me, there’s no reason to stop it now. Especially when my oncologist is in the middle of retiring, which I think is a good idea.
Oh! I also introduced my blog to Kelly (my social worker when I was a child at Kaiser), and she said it was written beautifully.
Today I took my meds at 9:50 AM. I swear my alarm didn’t go off. I also checked the app and it said “every day”.
Maybe I’m being hypocritical right now but I swear it wasn’t my fault!
A doctor from Stanford called and said I needed to start taking Vitamin D supplements.
I’m not hyped about taking new medications because there are always side effects.
I looked online to see what a Vitamin D deficiency is, and I was scared I that wasn’t eating enough vegetables (How embarrassing would that be?), but it’s not that.
Vitamin D is nicknamed the “sunshine vitamin” because it’s produced in response to sunlight.
Great!
Well, not great!
Well, kind of great!
That means I’ve been keeping out of the sun. I’m kind of too lazy to wear sunscreen, so I just hide from the sun.
Honestly, I would take a Vitamin D deficiency over skin cancer any day.
So, it’s okay (at least in my eyes).
Today I started taking my Vitamin D supplements.
My mom refilled my medications today and received vitamin supplements with the usual prescriptions.
I take two tablets daily at night, or 100 mcg per day or 4,000 IU. Each tablet is 50 mcg or 2,000 IU.
The Vitamin D Council recommends getting at least 5,000 IU of Vitamin D every day.
They’re not much of a hassle to take. I always take the medication with water.
Today I hung out with Izzy. I met Izzy at the transplant reunion party last year (August 11, 2018). Since then, we’ve become friends.
She’s also a heart transplant recipient. Not only is she younger than me, but she’s also more active than me. She does gymnastics, volleyball, and track.
We met at Denica’s Real Food Kitchen, which is a cafe that does a lot of brunch stuff. Since I wanted to be pseudo-healthy, I got a salad.
We talked a lot. Izzy’s medications have significantly reduced since her transplant. On top of that, she’s always being active and has almost never been sick. She’s always careful in school.
If she’s at a playdate or sleepover, she makes sure to grab her medication or have her mom bring her meds. So she’s very responsible.
We also talked about my driver’s license and college. I’m in SAT Prep class right now and it sucks. It takes up all my time and I can’t even update my blog.
For my driver’s license, I’m pretty lazy about driver’s ed so at this point I’m just going to wait until I’m 18 to get my permit.
It was a pretty good day meeting Izzy again. She asked me if I’m going to go to transplant camp, and I said I would. She said it’s a lot of fun, and that it’d really be great.
General Questions
How old are you?
16
Where are you from?
San Jose, CA
Transplant
What was your transplant?
kidney, recieved September 28, 2011
To make it more special, Attison’s mom named the kidney Charlie, after a character from the TV show.
What was your condition that led to the transplant?
kidneys stopped growing when she was young
What was life like before transplant?
Pretty normal, I guess
How long did you wait for your transplant?
not very long, short
How was the road to recovery?
Um, it was a little rough at first learning how to take medicine and stuff, but it was pretty easy when I went back home.
What can you do now after transplant?
Almost everything normal people can do.
What are you most excited about after being healthy?
Being able to do anything I want and not having to take medicine every day.
Donor
Do you know your donor?
Yes, it was her mom.
How is your mom now?
She is healthy as ever.
Why did you find taking medicine difficult?
It’s just really hard to remember to take it all the time and it gets in the way with what I want to do.
Do you take medicine every day?
Yes. It’s gotten easier, yes.
Why did your mom decide to donate?
Well, because they told us she could work and she didn’t want me to wait for another transplant.
What would you say to people considering to be an organ donor?
They should definitely do it because it’s very helpful to people like us (gestures to camp).
Another Monday, another school week. Ewwww.
Anyways, I had my 504 plan today. My last 504 plan was on October 4, 2018, so I was surprised that this one was so early in the school year. Also, the school didn’t inform me that my 504 plan was today?!? I just found out yesterday when my mom and I were fighting when she yelled “Y’know, why don’t you just not come to the 504 plan tomorrow!”
The reason I have a 504 plan and not an IEP is because a 504 plan is added modifications to your academics while an IEP is a completely customized education.
As expected, not all my teachers were there. Of the group attending was my AP Psychology teacher, US History teacher, vice-principal, school nurse, and school counselor.
So it was the same old, same old. Just the usual stuff:
Last year was the tricky year. Since I was so fresh out of transplant, I was so sensitive to diseases and getting sick. When ever someone coughed in the classroom, I would avoid them like the bubonic plague.
I don’t anticipate this year to be as tricky. I feel that it’s going to be easier, and that I have a lot more freedom.
What’s different about this year is that I have a full schedule instead of the five periods I attended last year (10th grade) and ninth grade (the grade I was in heart failure).
Pre-transplant I could take my medications roughly in the morning and evening, but now my meds require to be timely. I take my morning meds in first period (8:45 AM), but no one minds because everyone minds their own business.
I mean, who would be like “Oh my god, he takes meds! Hahaha!” High school kids are mean, but they’re not THAT mean. I feel like the only people who would say that are people who don’t have lives.
My new hematology doctor wants me to start lisinopril, a medication to treat high blood pressure. I think it’s something about my ace inhibitors or a level being low. I’ll be taking 5mg lisinopril in the evening and reducing my diltiazem level to 60mg in the morning. Of course, I’m always anxious when starting new meds, but hopefully everything goes well!
Update: Because my blood pressure is low, we don’t need the diltiazem as lisinopril already lowers blood pressure. Also, since diltiazem raises the prograf level, the prograf level will drop when we take off diltiazem.
We’re switching the Envarsus to 3pm, because I can’t do blood draws at 8:45 am Monday and Thursday before class. Monday and Thursday because I can tell Lena on Tuesday and Friday what the results are.
Blood pressures need to be recorded because they’re going to be closely monitored.
It’s a lot.