My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!
And can you blame me about complaining a lot? In 1 year I:
- learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
- learned that my heart was failing
- my normal life was taken away
- got my first IV
- was considered for heart transplant
- missed 1/2 my school year
- In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
- considered transplant by doctors
- had 3 hospital stays in 3 months in a row
- considered dropping out of school
- was listed for transplant
- got a transplant 2 weeks after listing
- suffered recovery
- still suffering recovery
All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.
Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.
Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.
I woke up with a sore throat. In the past, a sore throat is a precursor to being sick. I CAN’T get sick. I’m only 2 months post heart transplant. When you’re sick, you’re more prone to infections. If I get an infection, I might contract cancer, and the only treatment is chemotherapy. Or infections could damage my new heart and I’ll need another heart.
Let me explain:
It’s really easy for me to get sick right now. Your immune system fights off colds, but it also fights foreign substances. When I got my heart transplant, the doctors created a black death for my immune system. That way my white blood cells can’t fight against my new heart.
After the black death, I also take immunosuppressants. Immunosuppressants are medications that suppress your immune system. We need to make sure the population of my white blood cells are controlled. With these immunosuppressants, I’m more vulnerable to infections.
I say right now because when you’re fresh out of transplant you’ll be more vulnerable than a year later. As your body gets more adjusted to your new organ, you can decrease your immunosuppressants and allow your immune system to become stronger. As I’m only 2 months post, I’m more vulnerable than I will be 6 months post.
If I get sick right now, I don’t know whether my immune system will be strong enough to fight it. If my immune system isn’t strong enough, I can get an infection. The infection can damage my heart, and worse case scenario make me need another one.
Another possibility is I get lymphoma. When you’re sick, you activate your lymph nodes to fight off infections. Lymphoma comes from those lymph nodes. If you’re to get cancer after heart transplant, it’ll be lymphoma. The only treatment for me is chemotherapy.
I’ve been coughing a lot today. I think I’m sick. I don’t want to be sick. I don’t want to go back to the hospital (see June 3, 2018 Sick Pt. 1).
Tonight I was shivering. I was shivering yet hot at the same time. I think it’s because of my prednisone.
When we left the hospital, the doctors told us to call them anytime I needed. They gave us a binder with the hospital’s number on the cover. The number was available 24/7. My mom didn’t call the doctors because she was afraid that I would have to go back into the hospital for a common cold.
My mom called the doctors tonight. She had to. My cold wasn’t worse than yesterday, but it still stayed the same.
Getting a cold is bad for me (see June 3, 2018 Sick Pt. 1). Especially this early out of transplant, I’m more vulnerable to infections.
I coughed all day. I also shivered, like yesterday.
The doctors called back and told us if I got more sick and didn’t get better. That’s a relief, I don’t have to back into the hospital.
My coughing has gotten better. Although my throat is still sore, it’s not as bad as before. I also wasn’t going back and forth between cold and hot.
My coughing was better today. It’s not as bad as before. I can soothe it with tea. Luckily the Ronald McDonald House provides free tea.
I made key lime pie with Angela today. Angela is my friend at the Ronald McDonald House. We followed a recipe from AllRecipes. We squeezed a lot of lemons and limes for our key lime pie. Squeezing was okay though because it was fun making the pie.
At the Ronald McDonald House there’s a community fridge where you can give food. Angela and I shared our key lime pie with the community.
My cold was completely gone when I woke up today. Thank you God.
It was on time too. I had a physical therapy appointment today. I take physical therapy because after my surgery everything is sore. I have to readjust to my new heart and become more flexible. After heart transplant, even sitting down was hard.
My physical therapist is pregnant and will be delivering in a month, so that’s pretty cool. I’ll get another physical therapist when she’s on maternity leave.
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?
The thing is, I’m not really worried about it that much. I’ve been sick before (June 3, 2019), and nothing really happened. Also, I’m approaching the one year mark anyways, so I’m not extremely vulnerable to infections.
I might seem very chillax compared to my other journal entries (December 6, 2018), but that’s just the way it is boo. I’m an unpredictable person, hahaha.
I decided to not go to school today, but only because today is a useless day anyways. Today at school is a block schedule, which means a full day of nothing in each class.
I also swam today, but only for twenty minutes. I was kind of debating about it, since it is an outdoor pool and I swim at nine in the evening, but whatever. Exercise number one.
Tomorrow I might go to school, but my mom doesn’t want me to risk it. I might get even more contaminated, but I have two tests.
I’m still sick, but I decided to go to school. However, I only went for math and chemistry.
I know that going to school while sick may be a death sentence, especially for me, but I have tests in both of those classes.
When I went to math today, surprise! No test. Testing tomorrow (Thursday) and Friday. 🙄
In Math I was a bit nauseous, a bit dizzy, and a bit paranoid. I wanted to leave the class and just rest at home, but then my grades would fail.
So that sucks.