"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
The results from my labs are back. My prograf levels are great. I’ll decrease my prograf to 0.5 mg in the morning and 1 mg in the evening. We’ll check the level in a week.
In other words, my immunosuppressants are working great. My doctors are going to reduce the amount of immunosuppressants I take.
I had a blood draw to test my Prograf levels today. Prograf is my immunosuppressant. I regularly test my immunosuppressants because is they’re too effective, the doctors lower its dosage. If it’s not effective enough, the doctors raise the dosage. My Prograf levels are supposed to be between a range, and if they’re not then my Prograf dosages are adjusted.
Here’s my medications (over 6 months post transplant):
| 8:45 AM | 8:45 PM |
| 0.5 mg Prograf | 1 mg Prograf |
| 360 mg Myfortic | 360 mg Myfortic |
| 100 mg Gleevec | 120 mg Cardizem |
Myfortic is another immunosuppressant. Cardizem is for my blood pressure.
Gleevec is not my transplant medication. Gleevec is my chemotherapy drug that controls my hypereosinophilic syndrome
I got my labs drawn today. They’re checking my Prograf (anti rejection medication) levels. On Friday I’ll go to the Stanford hospital for a doctors appointment.
I had a doctor’s appointment at Lucile Packard Children’s Hospital today.
We left Pleasanton at 8 AM. We arrived at Stanford just in time for my 9:45 AM appointment. We checked vitals first, then I had my echo done. An echo is short for an echocardiogram, which is a test that takes pictures of your heart. It’s like an ultrasound for the heart.
After the echo, we went to the clinic. The clinic is the part of the appointment when you talk to your doctors. Everything is great. My sneezing is okay. I don’t think I’m sick.
My Prograf levels are also great. The level is 6.3, and my goal is between 6 and 8. I’m taking 1 mg of Prograf in the morning and 0.5 mg of Prograf in the evening.
In translation, my immunosuppressants are doing their job well. My immunosuppressants also have a range, and that range tells us how much immunosuppressants are presents in my body right now. My blood is checked regularly because we want that range to fluctuate.
I also noticed that I haven’t had leg pain for a while now. Leg pain refers to when I have pain in my calves. Before my heart transplant, my leg pain was so bad that I had to stay at home for a month.
My psychiatrist also came in. If you remember, in the Ronald McDonald House I had a psychiatrist that I had to meet with every Friday for 5 weeks (see May 22, 2018). Well, that psychiatrist graduated, so I have a new one. Anyways, I told her that everything has gotten better since the first day of school.
The doctors said I could go to transplant camp over the summer. If you remember the transplant reunion (see August 11, 2018), a girl mentioned transplant camp.
Anyways, after my appointment, I ate at the hospital cafeteria. The hospital also opened their gift shop and I bought a jacket there. Afterwards, I went home.
Ever since my doctor appointment with the G-tube doctor (see December 12, 2018), I’ve been checking my weight.
I’m around 100 pounds, but my scale is weird.
I’ve been checking my weight in the morning and at night, and I could weigh 104 pounds at night, but 102 pounds the next morning.
I’ve also been noticing my eating patterns.
I think the problem is that I’m always constantly hungry.
I think I’m so used to hunger spasms that I’ve learned to ignore them, and they eventually go away.
When I do eat, I quickly become nauseous.
Hopefully, that’ll change.
Also, I have not started on those appetite pills yet. I want to have Stanford approve them before I start taking them.
I have 3 months to gain 10 pounds. Gotta get that extra fat.
I took my medicine at 10:41 AM. I was supposed to take it at 8:45 AM.
Obviously 1 missed dose won’t kill me, but I don’t know what could’ve happened during the two hours the immunosuppressants worn off.
I’m going to be more careful now.
Today I had pain in both of my legs. I don’t know what triggered it, but I hadn’t felt leg pain in a long time. I took Tylenol to calm down the pain.
Today I took my medication at 1PM. I was supposed to take it at 8:45 AM.
My alarm clock must’ve not gone off. But I checked my iPhone and the alarm was still set for 8:45 AM every day!
I already missed two doses: one today and one December 24, 2018. My body is very sensitive to the immunosuppressants, so I really hope that nothing drastic happened with those missed doses.
In psychology, I watched a video about how teenagers purposely missed multiple doses, and they all died. I’m not going to die, but I don’t want my heart to be damaged.
Today I took some pain medication for legs, aka I popped in two Tylenol into my mouth and swallowed.
I don’t know why, but it just hurt. I didn’t even workout today. 🤷
Today is daylight savings time, which means the clock is turned forward an hour. Honestly? It kinda sucks.
When dealing with medication (especially immunosuppressants) that have to be timely, turning the clocks can confuse us. For example, if I took my medication at the usual 8:45 AM, then I’d be one hour early.
My biology doesn’t follow the American government. It won’t automatically sped up dissection of medication by one hour so it can keep up with daylight savings.
It’s a little tedious, and frankly dangerous for people with medications. One missed dose or extra dose of medication can mean severe consequences, and that’s REALLY bad.
Anyways, this is just my reminder to everyone with medications, remember to plan it out!