Tag: rejection

November 14, 2018

~ Campjustin ~ Leave a comment

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 AM8:45 PM
0.5 mg Prograf1 mg Prograf
360 mg Myfortic360 mg Myfortic
100 mg Gleevec120 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

December 6, 2018

~ Campjustin ~ Leave a comment

I’ve been sneezing and blowing my nose all day.

I’m scared that I’m sick. I don’t want to be sick.

I don’t want my heart to be rejected by my body. Or my heart to have an infection.

Okay, so if I’m sick, is it really that bad? There’s a very little chance of that happening.

There’s still a chance though.

Idk maybe I’m just too worried.

I do everything to protect myself from being sick. In school when someone even coughs I instantly switch seats to the back of the classroom. I never participate in activities outside because I don’t want to get cold or muddy.

Oh wait… yes I do! Yes I do!

Everyday I swim at night.

Everyday I swim at night!

The one thing that’s supposed to be shielding my heart from infections, is giving my heart infections?

It’s also December. Ever since late November it’s been more and more cold.

Well, I have a doctors appointment tomorrow at Stanford.

Should I tell them about this? Is it even important?

They have dying children to take care of. Should I tell them I think I might be sick?

January 16, 2019

~ Campjustin ~ Leave a comment

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.