"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
Later in the day I went for a general doctor appointment with my general practitioner. Everything checked out, and I don’t need any shots.
I also saw my doctor for the first time after transplant today. He is my cardiologist at Kaiser before my heart transplant. He’s the person that pushed me in the direction towards transplant.
When my Mom told me in the car that I needed a heart transplant, she said that she and him have been talking about it for several months.
My 504 meeting plan (plan meeting?) was today. A 504 plan is a specialized education plan for kids with disabilities to give them extra accommodations. For example, if a kid had a learning disability a 504 plan would allow them to have extra time on tests. In my case, a 504 plan accommodates me when I’m in the hospital, have medical related illnesses, or in the rare case when I’m homeschooled.
Last school year my 504 plan was a lifesaver. When I was hospitalized last school year for calf pain, the 504 plan allowed me to be homeschooled for over a month. I was in the hospital for both semester finals, and the 504 plan excused me from taking them.
The vice principal and the nurse were there at the 504 plan meeting. All of my teachers except my Biomedical Sciences teacher (see October 12, 2018) and Chemistry teacher (see October 18, 2018) were there. I explained what I needed: unlimited bathroom access, access to the nurse’s office, extended time for missing schoolwork and homework, and the ability to move away from sick and coughing classmates.
After transplant, I’m very immune compromised. With a new organ, the immune system might see it as a foreign substance and start attacking it. Therefore, I have to suppress some of my immune system through my medication. If I do get sick, I have a chance of getting a live virus that will attack my heart or activate my lymph nodes that’ll trigger a cancer.
The school nurse understood the severity of the situation and gave the teachers a germ free classroom handout to pass in class. The hand out stressed the importance of not coming to school sick because of one (me!) immunocompromised classmate in their class. The hand out is included below:
The nurse said I’ve been through a lot, but told me this would be a great school year.
One of the students in this class has a medical condition that makes the student highly susceptible to infections. This is because of a medicine this student takes; there is no concern that this is a potentially contagious disease to any other person. We’d like to ask the parents to be considerate to the student and all the other students in the class.
Points to review for infection control (for complete district policy, refer to the health services website)
Today was my doctor’s appointment. Since my Mom is in Paris, I went with my dad instead. We left around 7 AM.
At the doctor’s appointment, I went in for an echo first. An echo is basically an ultrasound for your heart. Then I met with my doctor.
A funny story about my doctor: he knew me since I was a baby. When I was at Kaiser being treated for my hypereosinophilic syndrome, I was his first echo. When I was older and transferred to Stanford, I was also his patient. He said he only knew two people with hypereosinophilia, and I was both of them.
I recited my medication: 1 mg pill of Prograf 2x a day, 360 mg tablet of Cellcept 2x a day, 120 mg capsule of Cardizem 1x a day, and 100 mg of Gleevec 1x a day. If you’re a transplant recipient, you probably know all of them except for Gleevec. By my 3 months post transplant, I got off many drugs, for example Prednisone.
I lost a pound between now and 3 weeks ago. The doctor advised me to eat more protein. Since I am exercising, I’ll burn my calories and gain muscle. I’ll start drinking protein shakes again.
It is 6 months post transplant. Now I’ll only have hospital clinics, echo, and blood draws once a month. I’ll also only have to do biopsies once every 3 months.
I almost left the appointment without getting the flu shot. Since I am fresh out of transplant, I have to get my flu shot in 2 phases. During the last doctor appointment, I had my first dosage. This appointment I got my second dosage.