I didn’t know I would be having a transplant in 2020. I went into the hospital for fluid management, my heart wasn’t responding to my diuretics anymore-which meant it wasn’t pumping as well. I was being admitted for IV diuretics which work better and to be monitored. Except I was sicker than we thought, and 18 days later I received my new heart.

I was thrown into the transplant world. Oh, what I wish I knew.. so for the soon to be/newly transplanted, here’s a few things I’ve learned so far….

#1: the surgery is just the beginning. You’ll be back in the hospital that first year, more times than you can count. and you will have more appts than you knew was possible.

#2: transplant isn’t a cure, it’s a treatment option. It brings on more issues than you could imagine.

#3: everyone knows the side effects of myfortic/Cellcept post transplant. Your GI system will hate you and you’ll probably crap yourself a few times. Be sure it’s the night you have the really cute, single male nurse.

#4: there will be moments you laugh and moments you cry. And then there will be the day, a knocked over glass of water causes a meltdown, because that’s not really what you are upset about.

#5: Remember Casper the friendly ghost? Yeah? Buckle up, because you are going to get ghosted by people. you’ll learn who your circle really is.

#6: your life will be lived by a clock. You will have set times to take meds, at first it will be about 4 times per day. There is no more sleeping in, time for morning meds. Rise and shine! Export tip: more of a night owl? schedule your meds later, just make sure they are 12 hours apart.

#7: ER doctors will find your case fascinating and you will answer lots of questions. Hospitalists..not so much. They will be afraid to make the transplant team mad. They’ll coordinate the specialists, but transplant will run the show.

#8: Meds. You’ll be on meds to take care of side effects of other meds. It’s not uncommon for Tx patients to take 30+ pills a day. You’ll get used to it. Find a system that works for you. Get a cute pill case. Add some decor to it.

#9: you will no longer carry a small purse. You’ll want to carry a spare dose of meds. Oh and then all the PRN stuff: glucose tabs, insulin pumps for the steroid induced diabetes, nausea meds, Benadryl, you name it, it’s in there. You now carry a small pharmacy-oh and papers. Lots of papers-your med list, all your doctors contact info, a brief medical history, allergy list. Oh and don’t forget to have the transplant teams contact info on every page.

#10-sleep is notoriously hard to get post transplant. It’s the mixture of our meds and they keep us up more than half the nights. You’ll get a lot done between the hours of 12am-5am. And then you’ll take a short nap.

#11: everybody and I mean everybody, will want labs. You’ll know the phlebotomist at every lab who can get your vein, by name. you’ll be able to tell them where to go. Left arm -gotta go high or low.

#12: people will call you strong and resilient. It will rub you the wrong way at times. You’d rather not have gone through everything you did, to be known as resilient. But in time, you’ll be able to give yourself credit for all you got through. Take your time with this, you’ll get there.

#13: if you were type A before you will be type AAA now. You will manage-all your specialists and appts, you will keep track of when your meds need refilled and by what pharmacy (#always get your immune suppressants and anti-rejection meds from you transplant center). Keep a running list of your vitals-keep notes of symptoms and med changes. Electronic is better so you can just message it off to your doctors.

#14: You will have a support person/caregiver who will be the real MVP to your story. They’ll keep you on time with meds, make sure you eat, remember things at appts that you’ve forgotten, run and fulfill your random requests and so much more. they’ll laugh with you at 3am when you can’t sleep, wipe your tears when it’s all to much,m and be your biggest supporter.

#15: that first year your goal is to stay alive and survive. The second year your goal is to thrive-not just survive. And the third year-your goal is to live. Transplant won’t be at the top of your mind 24/7. But your life will now be viewed as before transplant and after transplant. You’ll start to live.

#16-you’ll catch yourself sometimes thinking how crazy science is that you now have someone else’s heart that is now yours. You’ll realize your transplant team has an incredible responsibility and that’s why you follow so many rules.

#17: no more sticking your toes in the ocean, no large crowds, certain foods are now a no-go. All to protect you from an infection your body might not be able to fight and rejection.

#18: rejection is scary, but germs are scarier. Rejection can most times be treated, but germs and infections could take you out.

#19: you’ll always want to be clean. You never know when you’ll end up in an ER or admitted. You’ll keep a go bag packed-change of clothes, deoderanf, brush, toothbrush, phone charger, dry shampoo.

#20-Hope (always) wins! There will be days that you’ll feel so crummy, you don’t think you’ll ever feel good again. But you will. I promise. Hold on to hope, that tomorrow will be even just a little better.

I promise you’ve got this. I promise your caregivers got this! I promise Our Lord’s got this. In the moments of good, thank God. And in the moments of desolation, pain or just not good, seek consolation in Him. If you can’t see his plan, remember you can always trust the heart of God. For he is good.