Heart Transplant
We spoke to some women whose heart failure became so severe that it could no longer be managed with medications, lifestyle changes and other interventions, so a decision was made to proceed with a heart transplant. They described heart transplant as a major operation where their failing heart is replaced with a healthier donor heart which is often seen as the “last option” when it comes to treating heart failure. Transplant was only explored after all other avenues of treatment had been exhausted. Many of the women were not very certain about the specific eligibility criteria for the procedure but understood considerations by their healthcare team related to age, health, and lifestyle.
Resistance to Transplant
Only some of the women we spoke with had received a heart transplant at the time of the interview. Others acknowledged that a transplant could be in their future, while still others had not yet reached a point in their medical journey where transplant was being discussed as an option. Even though participants were at various stages around the need for a transplant, many of them expressed some resistance to receiving a transplant and wanting to do everything possible to avoid ending up on the transplant list. Lori just wanted to get on with her life and didn’t want to think about transplant when she was young:
“They wanted me to go see the transplant docs to maybe start workup for transplant but back then I was like 25, like come on, like let me get on with life. The sad part was I was in and out of the hospital from 25 until 30, in and out of heart failure due to arrhythmias.”
Amanda talks about the conflict she felt around receiving a transplant.
Transcript
Did I want a heart transplant, yes because my heart was bad but no at the same time right? No one wants to go through a big tumultuous surgery like that. No one does that right? But I knew at that point that was my only way to live.
Lise speaks about not feeling ready for a transplant.
Transcript
When they told me back in I think it was June or July and they said to me ‘We’re putting you on the list. You’ve deteriorated so much we’re putting you on the list’. And I said ‘no, no I’m not going to. I’m not ready for it.’ And I […]
Anne1 shares feelings of fear regarding the thought of transplant.
Transcript
And my cardiologist said ‘Do you want a heart transplant?’ And I said ‘no’ because again I do not want. Heart transplants are amazing surgery, and I don’t think I’m brave enough to be honest with you to go through that, so I don’t want that.
Waiting for the Call
Once women had decided to pursue a transplant, they needed to wait for a suitable heart to be donated. They found that wait times could be unpredictable. During this time, there was always the possibility that their health would deteriorate, making it a challenge to stay positive.
Susan1 talks about waiting 'a year minus 3 weeks' for her transplant.
Transcript
So that began the whole process of being transferred to you know the transplant team. And I had to be admitted periodically throughout that – I waited a year minus three weeks I think. And yeah. So I had to be admitted a couple times and diuresed again [made to […]
Lynda waits for 8 months prior to receiving the call.
Transcript
When I finally, I got accepted of course onto the heart transplant list and it was eight months of waiting. So, I went through another eight months. I had to be sent to Vancouver because I was in really bad shape again. And I was working hard, I was looking […]
The Call
The women who did receive transplants were able to recall in great detail the moment they found out that a new heart had been found, following the intense emotions and experiences of waiting for a donor heart to be located.
Amanda describes emotional reactions all around her when she learned that a heart had been found.
Transcript
And the nurse was crying at this point, and she said ‘Amanda a heart became available and you’re going to go to surgery in a couple of hours’ … and so my parents were with me, and I was also seeing palliative care at the time because I was really […]
Naomi was shocked when she learned that a heart had been found.
Transcript
I was like this call cannot come fast enough. Like I am ready. Please give me the next heart available and I was just very very excited. So, I waited 3 and a half months and I was expecting a much much longer wait so when my nurse called I […]
Susan1 tells her family it's time to 'do a little dance' to let them know she got the call.
Transcript
And so it’s really funny, we had made a decision a long time ago my family that when I got the heart transplant, when I got the call or when I was notified I would call them and say “do a little dance.” — From the song “Get Down Tonight” […]
Transplant Criteria
While transplant seemed to come up in many discussions with heart failure patients and their care teams, several women seemed to be unaware of the criteria that would make them a transplant candidate or not. Lori wonders why she can’t have a transplant?
“It’s scary and frightening, especially when you feel like you have more life to live. You know this person got a heart transplant and that person got a heart transplant or that person got an LVAD, why can’t I get this?”
Despite some participants having had long-term involvement with the medical system, they also felt that transplant was sprung on them. Some women stated that had no prior knowledge that this was a possibility, despite being followed by cardiology teams for heart related issues for many years.
Shelly had been followed for heart issues since she was a child but was not aware that transplant was an option.
Transcript
I’d never heard anything. Nobody’s ever spoke to me about a heart transplant until that one doctor in 2017. Like, even me as a congenital patient. I never thought about mortality. But I never thought I could have a transplant. And even when the doctor told me in 2017 in […]
Deb worries she is too old for a heart transplant.
Transcript
There has been some discussion about me receiving a heart transplant. My cardiologist has assured me that if I need a heart transplant that we will see to it that I get it. Because I worry because I’m 63. Apparently the cut off age is 70 and he said even […]
Dido expresses frustration about trying to find information about listing criteria.
Transcript
And I said ‘OK, well heart transplant?’ ‘No, you’re nowhere near being ready for a heart transplant.’ I don’t even know. I’ve tried to ask questions about if my health really goes south what has to happen for me to get on a transplant list. And no one will have […]
Susan2 describes the uncertainty of being on a transplant list.
Transcript
My ejection fraction had dropped back to 26 from my stability where it was, about 34-35 at the time. And so that had caused symptoms. I was kind of failing, back in heart failure anyway. And this time I met with a fellow in the heart clinic at the hospital […]
Side Effects
Despite the new lease on life that transplant brought for several women, there were side effects, challenges and bumps in the road. Some had issues with the new medications, others experienced new medical problems and sometimes the new heart did not work right away. Maya experienced some organ rejection following her transplant and then “five years after my transplant I was diagnosed with kidney cancer again.”
Amanda talks about medical issues that she has experienced since having a transplant.
Transcript
So my life post-transplant from a cardiac perspective is fine. I did have some weird cardiac events throughout and I’m on a boatload of medications including the dreaded antirejection drugs that everyone hates but they do their job. I did have a cardiac event in October of 2021 that required […]
Shelly describes how her new heart did not work properly at the beginning.
Transcript
So my heart was beating but they couldn’t take me off the temporary pacemaker because every time they tried to take me off it, I would get a shock. Almost like electric shock to my heart – ‘cause my heart wasn’t beating properly. My new heart.
The Gift of Life
Transplant is known as the gift of life. Some participants who received a transplant spoke about waking up after transplant and feeling different. Participants who received transplants were acutely aware of the fact that they have been given a second chance at life and that in order for them to live, someone else had to pass away so that an organ became available. This sacrifice was not lost on transplant recipients who expressed gratitude to donors and their families every day. Naomi describes her transplant anniversary date as her ‘Heart-aversary’, sharing her gratitude:
“So that was almost a year ago – I’m about to celebrate my one year heart-aversary, which I am very very excited and very very thankful about.”
Shelly woke up and instantly saw a difference.
Transcript
So I remember getting out of bed and they let me walk to the washroom … and I looked in the mirror. And my face, because I was on Prednisone, was like massive. Like huge huge but it was pink. And I had never had pink cheeks before in my […]
Amanda struggled with knowing that in order for her to live, someone had to die.
Transcript
I did not focus on the wait whatsoever because as you know, in order to receive a heart, you need to rely on a deceased donor. And yes, part of me wanted a new heart so I can live and continue my life but also didn’t – because I didn’t […]