Things i wish i knew pre-transplant
Here's what I want you to know. You, holding vigil between life and death, on the journey of beginning again. These are the things I wish I'd known, the things I wish I could go back and tell the me of 8 months ago.
It will hurt like hell. Physically, mentally, emotionally. Anyone who tells you otherwise is lying. Everyone who tells you it doesn't hurt that bad, that you're good, is lying. You are entitled to your pain and you are entitled to every bit of it. This is your permission slip to throw tantrums, to cry in front of doctors, to scream and to obnoxiously hit your call button demanding pain meds. Do whatever you need to do to survive. But know you will survive. Imagine I'm sitting beside you now, holding your hands, look me in the eye and believe me when I tell you that you will survive this. It doesn't feel like it, it feels impossible to think beyond the next 5 minutes, and that's ok. Let it hurt, I've got you.
I'm passing along the best advice my doctors gave to me. Sitting on my bed, holding my hands (That's important). You have a team of medical professionals on your side, and they are going to help you survive. But you have to choose to survive. It will get hard and messy and there will be bumps in the road but right now make that choice that you will do this. There is no half way, be all in. Your life depends on it. And remember to breathe. Oxygen helps your body heal. It may also help to have someone breathe with you so you don't hyperventilate.
It's ok to be sad. It's ok to be angry. It's ok to feel guilty that you survived and someone else didn't. It's ok to be grateful. It's ok to feel it all in the exact same moment. However you feel is ok. Don't feel like you need to be positive all the time. And if you're having a good day, have a good day.
Tilt your chin down when you drink. I promise it helps. Having something weighted or pressed up against your incision site helps. Heat packs help. Warm up your arms before labs, find easy to digest foods you like because your muscles will hurt trying to digest anything for a while, when the doctors tell you to walk they mean it, even if you hate it. Do your physio (Bonus points if you also have an awesome soundtrack), take lots of naps, and learn to be ok with the fact that you won't be able to do anything on your own for quite a while. It feels like a loss of dignity and independence but it won't be forever. Wear your mask, take your meds, wear sunscreen when you go outside, and buy the good hand sanitizer because it will become your new best friend
Find your community. And I'm not just talking about your family or pre-sickness friends. Find people who've also had transplants. Find a support group. Find a therapist. Find mentors farther along this journey than you who are living the life you want. You'll need it.
What happened to you is traumatic. You'll heal better the sooner you acknowledge that. You can avoid dealing with it but I promise it never goes away.
Nerve damage is normal. Your scars will heal. Even little progress is progress. Always celebrate your own achievements. I recommend donuts.
Coloring books, pinterest, reality television, animal videos on youtube, anything to take your mind off it helps. You can't live in the acuteness of your reality all the time.
Ask for what you want. The worst thing they can say is no. You're in charge of your care now, this is your life. If you don't like something, say so. If you want a second opinion, ask for one. If you're not ok with something, speak up. Ask for alternatives. Make requests.
Popsicles for breakfast. My hospital had a secret menu where you could order popsicles with every meal, hamburgers, chicken strips... You have to ask for it, but it's way better than actual hospital food. And breakfast is way better than any other meal, but don't trust the toast
You will navigate your way through this. It will take time. It will be hard. You will make mistakes, and you'll probably end up apologizing a million times for things you did when you were on drugs. It's ok to be selfish. It's ok to not know.
Your life will be beautiful. And worth it. Trust me. Your life is worth fighting for.