Life After a Heart Transplant: A Conversation with Linda Jara
Learning How to be a Heart Transplant Survivor
Issue no. 2: matters of the heart
words - KANDACE FULLER
illustration - Singha Hon
In 2014, Linda Jara suffered a heart failure. In October 2016, she received a transplant. In talking about her life post-transplant, I discovered that Linda’s candor and willingness to educate are among the few things that have managed to stay the same.
“Everyone’s transplant journey is different.” This is the first thing that Linda Jara says when I ask her about what recovering from a heart transplant is like. She reiterates this point often.
“As a heart transplant candidate, we’re given lots of statistics and averages, but it’s important not to measure one’s own recovery by those guidelines. On average, an individual is in the hospital for nine days after transplant; I was in for 23.” Linda’s recovery has been full of frustrations, which mostly crop up when comparing herself to other patients. Her perspective changes when she sees other “second-lifers,” heart transplant survivors, who had surgery around when she did. “Some of them are leaps and bounds ahead of me, but one needed a wheelchair the last time I crossed his path at the hospital.” No, there is no such thing as a typical recovery.
Linda regularly talks to her transplant therapist to sort through myriad disappointments, and to wrap her head around the dramatically changed world she’s found herself living in. She’s gained a new heart, but the amount of loss that comes with it is often hard to fathom. Some of it is easier to make light of than the rest. “No sushi. Raw fruits and vegetables need to be carefully washed…I don’t even chance having a salad at a restaurant. Even lunch meat needs to be steamed before I eat it.”
“On average, an individual is in the hospital for nine days after transplant; I was in for 23.”
There’s room for humor here, but also an undercurrent of mourning. One that comes with swapping one’s normality for a new normal, and where Saturday sushi and turkey sandwiches are the new anathema. Ask Linda what the big losses look like, and she’ll readily explain.
“Heart transplant survivors need 24-hour supervision for the first three months after discharge, because the nerves attached to our native heart are not reattached to the new one. We wouldn’t know we were having a heart attack, if it were happening. I consider myself fiercely independent, and the loss of independence was difficult.” It meant no driving, or going out alone for months.
But as far as losses go, even this is relatively inconsequential. During the early stages of her recovery, Linda lost relationships that meant a lot to her. “I have no idea what it is like to be friends with someone who has endured heart failure, and I don’t fault anyone who needed a break…I’ve made new relationships, ones that are just as strong, but these were some of the hardest losses to take.”
In addition to this, Linda has had to cope with losing her teaching career. Linda taught for 23 years; it was her passion, and not only was she great at teaching, but at building relationships with students she taught. Most second-lifers aren’t cleared to work until a year post-transplant. Linda wasn’t confident about returning to the classroom, but hoped that she might be able to head back in a little under a year. Unfortunately, her Year One checkup results didn’t rule in her favor, and Linda was forced to retire early. “My employer and I attempted to work out a part-time alternative, but it didn’t work out. Teaching was a part of my identity. It was my career. I’m disappointed, but looking at it as another mile on my journey.”
Part of that journey is dealing with inevitable financial difficulties. She worries, “I take about 45 pills daily. It is expensive. Post-transplant medication costs about $7,000 a month, without insurance. Collecting long term disability or SSDI doesn’t give you much more than 60% of your regular paycheck. I was a private school teacher, and 60% of "not much" definitely comes with its challenges.” Linda’s support system has done a great job fundraising, but her bills, mortgage, and medication are constants, and outside support generally is not.
Amidst all of these challenges, Linda finds time and space to be grateful for the little things. Amongst her newfound freedoms, “Showers! As silly as it sounds, I love the freedom of taking an easy shower. Pre-transplant, I lived on a LVAD (left ventricular assist device) for 18 months. Showers were not frequent. The freedom to live as fully as I can is something I do not take lightly, and I am forever grateful to my anonymous donor. I have my limitations, and am overly protective of the new heart, but I am not in the hospital. I am no longer hooked up to machines. I take a ton of medication, with alarms going off throughout the day to remember them all, but I am alive. And taking showers!”
Linda says that one of the hardest things to remember is to treat herself with kindness as she continues to recover and fight. “I recently told someone that I took what life threw at me, and punched it back with as much grace and dignity as I could. I strive to do that every single day.”
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Linda Jara fundraises via Help Hope Live, a national nonprofit supporting community-based fundraising for those with unmet expenses related to organ transplants and catastrophic injuries and illnesses. All contributions to her campaign are welcome.
April is Organ Donation Awareness Month but you can register with your state registry by visiting your local DMV anytime of the year.
Disclosure: Kandace is a former student of Linda Jara, who taught her in 2009/2010 academic year during their time together at Girard College. This interview has been edited for length and clarity.
