Arrianna's Story

Organ Donation Week Day Three!

Tonight is slightly different to the other blogs this week. Arrianna talks about her journey to receiving a heart transplant, rather than a kidney. I know this blog is to raise awareness of CKD but it also is used to promote organ donation and because of that I want to show you patients' stories of different transplants. Thank you Arrianna for sharing your story and allowing me to do that. Arrianna is from the US also, so her story also gives an insight into organ donation in a different country!

Again, if you haven't already please sign up to be an organ donor via https://www.organdonation.nhs.uk/register-your-decision/

"I was only 13 years old when I was diagnosed with heart failure. It all happened suddenly; I never saw it coming. I had just gotten very sick one day and it lasted way longer than normal. I had always been healthy and barely ever been sick, so I knew it was bad. Doctors could not figure out what was wrong with me at first. Until they realized something bad was happening to my heart. They had figured it was just some stomach virus I caught that went to my heart. I had to immediately be rushed to the hospital on Christmas Eve 2010. I almost died that night. But by some miracle I made it through the night and a week later I had my first open heart surgery. I made a full recovery and went back to living my normal life. I got to finish high school and go on to college.

Then one day in 2018, I started feeling off and before I knew it, I was having a hard time breathing and I was feeling very sick again. I ended back up in the hospital and again, doctors were stumped with what was going on with me. I was in and out of the hospital multiple times before I heard the dreaded words, “Your heart is failing and getting worse again.“ They had come to the conclusion that the only way for me to get better would be to get a heart transplant. As soon as I heard that I was terrified. I knew that this time it was even more serious. I told the doctors I would think about it but in my head, I was thinking there was absolutely no way I was getting a heart transplant. I was scared and I had thought that if I got one, I wouldn’t get to live as long of a life as I wanted.

Pretty soon after that I was transferred to the transplant centre in my state that was about an hour away from where I lived. They did a bunch of evaluations and tests on me and determined I was definitely sick enough to need a new heart. Since my symptoms of heart failure were so bad and since waiting for a heart takes time, they first suggested an LVAD (left ventricular assist device). Now I had never really heard of that before nor really knew anything about it. Just that I had seen it on an episode of Greys Anatomy. The LVAD is a special pump that is placed in your heart which can then assist your heart in pumping blood, relieving your symptoms, and helping you live a better life while you are waiting for match for a heart to come. I agreed to have the surgery, I was so desperate for anything to help me feel better, so I wasn’t bedridden every single day. The recovery from that surgery was the hardest thing I’ve ever done. I was in so much pain for weeks and I was beginning to regret going through with it.

Thankfully, after a few months of having it, I started to feel better and better. It was a lot to adjust to, but it helped me so much. I was able to go back to work and school! It had been about a year of having the LVAD when I was able to again be evaluated for a transplant. I again went through a bunch of tests and blood work to make sure I was still suitable for one. I was finally approved and added to the waitlist in January 2020. I had been told it was possible I could have a wait of at least a year due to my state not having very many people registered as organ donors and due to me being listed as a lower status since I was stable with the LVAD. Until I got a call just 7 weeks later from the hospital. I was asleep when they called so I missed it. They called me back and I just had a gut feeling that they had found a heart for me. As I was on the phone with my transplant coordinator, I couldn’t help but cry. I was so excited. I rushed to get my things packed and left for the hospital.

Once I got there it was just a waiting game. The family still needed time to be able to say goodbye to their loved one. I was prepped for surgery and went down to the operating room around 11 PM on March 3rd. The surgery didn’t start until sometime after midnight though. Next thing I knew I was waking up from anaesthesia with a new heart inside my chest. I felt a bunch of different emotions. Excited I had a new heart, sad because someone had passed on, and grateful because someone had been selfless enough to donate to someone they had never met before.

This recovery was completely different than the last. I never had any pain, and I was discharged from the hospital after only 9 days! This was such an exciting time until the day that I got home, the world started shutting down due to COVID. Everyone had to be in lockdown. I was upset, I just got a new lease on life, I wanted to get out into the world and live life, and I was now stuck at home. Looking back now, it was probably a good thing for me and my now weak immune system. I was susceptible to all kinds of illness because of the medications I had to take to make sure my body won’t reject my new heart. Getting a transplant is such an emotional thing to go through. I’m so glad someone said yes to being an organ donor. I now know who my donor was, and I am in contact with her family. They live in another state, so we have hopes of meeting someday soon!"