My cell phone rang while I was driving home. It was my mom.
Ordinarily, a phone call from my mom wouldn’t be an immediate cause for concern or panic. However, this was different. She was in the hospital and waiting for a heart transplant. A phone call from her could signal that it was GO TIME, meaning a new heart had just become available.
“Amy, are you sitting down?” she said with a nervous excitement in her voice that I hadn’t heard before.
“Well, I’m driving home. What is it?”
Although we had been waiting for this moment for months, I was for some reason oblivious to what she was about to tell me.
“They have a heart for me. How soon can you get here?” she said.
We had been preparing for this day for almost a year. She had gone through rigorous medical tests and endless doctor’s visits to make sure she was physically (and emotionally) able to handle a transplant. My brother and I read through binders full of heart transplant information and had meetings with the heart transplant social worker. We knew the ins and outs of the actual surgery, the in-hospital recovery, the required medicines, and all of the scary side effects and possible rejection statistics. We were armed with information.
No matter how educated we were on the topic of heart transplantation, I was scared out of my mind when the day actually arrived. There are times in your life where you don’t quite feel old enough to be an adult— like you look around the room and hope that there’s someone else that can be the adult if you can’t handle it. I was in my late 30s, married, and had three kids, yet I still felt like a kid myself.
My dad was supposed to be the adult that we could rely on. He planned to be there for her (and for us too). But as life can sometimes be unpredictable, he passed away shortly after my mom was put on the heart transplant waiting list.
I had three hours in the car by myself to wrap my head around the enormity of it all. My mom was going to have her damaged heart removed and seconds later, her body would receive a healthy heart from a complete stranger. As I was driving to the hospital in Houston to celebrate my mom’s new heart, there was a family in another hospital mourning the loss of their loved one. It is so enormous to celebrate at the same time someone is grieving.
I cried on the way to the hospital. Tears of joy, grief, and fear. Such conflicting emotions.
The surgery itself was supposed to be fairly easy, although that doesn’t factor in the emotional toll it carries with it. As opposed to most surgeries, heart transplant recipients wait months (maybe years) for a heart. So when it finally happens after such a long wait, the emotional weight of it is almost indescribable.
After a few hours, the surgeon came out and said, “Her new heart is beating and your mom is resting comfortably. Go home and get some sleep and then you can see her tomorrow.” His curt manner felt almost anticlimactic for what we had been through.
Looking back, the actual surgery was the easy part. The recovery was up and down and long and winding. She endured more in those months than most people do in a lifetime.
I won’t go into the details of her long recovery, but I was sometimes worried she would never come home from the hospital. There were meetings with neurologists and cardiologists, with endocrinologists and nephrologists. On busier days, we saw physical therapists, pain management, wound care, and social workers.
I knew the nurses well and they had a pretty good idea of when the doctors would make rounds. I figured out which doctors I liked and which ones didn’t learn bedside manner in medical school. The “nourishment room” as I learned quickly, is just a fancy way of saying “the crappy room with the ice machine and cold nasty coffee.” I knew which medications my mom took and why. I knew just enough to ask doctors specific questions about her pain, output, and behavior. I guess I was an adult after all.
What I didn’t know during all of that time in the hospital was how my mom was feeling. I could tell you her pain level on a scale of 1-10, her output numbers, and her Prograf levels, but what was she REALLY feeling?
What did she think about everything during that time in the hospital? Did she regret anything? Was it weird for her to have another person’s heart in her body? Did she think about the donor? What would she say to the donor’s family if she could? Would she do it over again? Was she angry at my dad for leaving her to recover without him?
So, after three and a half years post-transplant and a wild ride of ups and downs, I finally asked my mom these questions. Afterall, it is her story to tell.
What heart problems led to your needing a heart transplant?
Cardiomyopathy, severe regurgitation of the mitral valve (leaking), moderate regurgitation of the tricuspid valve, ventricular tachycardia (not controlled with medication), and arrhythmia (heart chambers not beating in sync).
According to my doctor, I would not survive any valve replacement surgery.
Did you ever think, especially after Dad passed away, “ok, maybe I don’t want a heart transplant after all”?
I had so many thoughts. Without dad, our grandchildren would grow up not remembering [him]. That alone was not a possibility in my book. For a decent quality of life, the transplant was the only option. Plus, I had never really asked what issues my heart had, so I wasn’t aware of how dire a situation I was in. So there I was, knowing the risks and benefits (or so I thought), my only option was the transplant.
Were you scared once the doctor told you that there was a heart available for you?
Oh, scared, relieved, anxious, frightened – every emotion known to mankind. Oddly I wasn’t fearful of the surgery itself. I was more concerned for you that I may not pull through. I was actually able to sleep during the time I was told and the surgery!! With everything I had been told and read, the surgery is only about 15% of the transplant experience. The remaining 85% is mental, emotional, physical – with no time frames for complete recovery, if ever.
What were you most afraid of leading into the transplant?
Death. Stroke. Surviving but with major mental or physical issues.
What’s the first thing you remember after waking up from the surgery?
Balloons!! And people. I was in a room, I think, not recovery. I was unaware of the time that had passed between the surgery and me waking up. I know now how frightened you were because of that. Since the transplant, my doctor has even said that I really scared him. My first conversation that I remember dealt with flowers that needed to be placed on dad’s grave. (What a conversation to remember!). However, it was an appropriate conversation since we were fast approaching the first anniversary of his death.
Do you sometimes think, “This is really miraculous- I have someone else’s heart in my body”? Or something to that effect? It’s such a HUGE thing to process emotionally.
Yes and no. I thank the good Lord for my second chance at life. But, at the same time, I so badly want to be a normal person, not remembered as the one who had a heart transplant. The concept of another’s heart beating, very well I might add, in my chest is totally overwhelming. Because of a normal heartbeat, no extra beats, I fall into a place of normalcy. I am not tired, no skipped heartbeats, no thready heartbeats, just normalcy. When I attempt to do something out of the ordinary, I do think about my heart and will it respond accordingly well. Always vigilant, not worried.
Do you know anything about the donor?
Nothing. A letter was sent but there has been no response. My transplant team will say nothing.
Do you have any desire to reach out to the donor’s family?
As I mentioned I sent a letter with no response. My emotions are still very mixed on this issue. I’ve spoken with transplant patients who have a very personal (duh) relationship with the donor family. Others worry and fret that they have no clue as to their donor. At this point, I am ambivalent. I won’t say no, but I won’t press the issue either.
I know your recovery was long and has been filled with complications. Do you have any regrets?
Absolutely not. I am able physically to do things that I couldn’t 10 years ago. That, plus having a different perspective on life.
After you recovered from your transplant, you decided to become a volunteer in the very hospital where you had your transplant. You even won the Volunteer of the Year award last year. What is your favorite thing about meeting with potential heart transplant recipients?
Just hearing their stories. Letting the patients see and hear from a recipient. Rewarding for me, and helpful to them. Questions can be answered truthfully and honestly from someone who has been there, done that. Once they have that relationship, their fears are lessened.
How do you feel today? Do you have any post-transplant fears at this point?
I feel well, with no transplant fears. As a pre-transplant patient, I was warned that I was trading in one set of problems for another. That has been true. I get frustrated when an issue arises, but I know I have the full cooperation and dedication of the transplant team behind me. No one is promised tomorrow, not even a transplant patient.
Do you feel that the heart transplant (although a difficult road, no doubt) gave you a higher quality of life?
Definitely. Four years ago I would never have driven, alone I might add, to Spicewood or Houston on a regular basis, or Delta Downs. I’ve been able to see my grandchildren grow up, graduate, go to college, attend pre-K, second, and third grades, [and see] my children grow up to be responsible adults and for me to actually have a social life.
If you could say anything to the donor’s family, what would you say?
My sincere condolences. Thank you for giving me a second chance at life. There is so much to say that words can not suffice.
If you could say anything to someone waiting for a heart transplant, what would you say?
Hang in there. Patience is a true virtue when you are waiting. Ask all the questions you and your family can think of. Educate yourself. Transplantation is a difficult journey, so prepare yourself the best you can. Transplant patients are a family – we will always be available. Take advantage of our experiences.
An absolutely ginormous thank you to my mom for answering these very personal questions and sharing her feelings about the entire experience. And a heartfelt thank you to the stranger’s family that will never know quite how grateful I am for the gift of life.