Recently I had the honor of speaking to my congregation during the National Organ Donation Sabbath. This is my first public speaking event about my heart transplant. I talked about my journey and the need for people to register as organ donors.
Below you can see a YouTube video of my talk and also a written transcript (for those speedy readers).
What the video doesn’t capture is Rabbi Folberg’s introduction of me, which includes him briefly sharing his experience with transplant, specifically his older brother’s cornea transplant.
The story is trip-the-fantastic. Rabbi Folberg as he tells it, was about 12 years old when his brother, a freshman in college was waiting for a cornea transplant. This procedure was less common back in 1969 (so I can only imagine the anxiety).
Luckily, the Rabbi’s brother would receive a successful cornea transplant on July 20, 1969. While healing, both of his eyes were bandaged up and he convalesced with other men on the hospital ward also healing from cornea transplants.
Perhaps July 20th, 1969 sounds familiar to you because it’s a day when people all over the world turned on their TVs to watch Neil Armstrong walk on the moon (it’s also the day of my mother’s birthday, but that’s besides the point).
The Rabbi’s father described the lunar landing to all the bandaged patients recovering from cornea transplants that day. What a memorable life moment.
The Rabbi’s brother would go on to become an ophthalmologist and even dean of a medical school with a career focused on cornea transplants. 😲Incredible.
I just have visions of Rabbi Folberg’s father describing the moon landing to the men with bandages on their eyes, all of whom know that soon enough they too will be able to witness life’s wonderment. ❤
Here is the YouTube Video of my 12 minute talk about my journey with heart transplant.
November 15, 2019
Thank you for this opportunity to offer the D’var Torah on this National Organ Donation Sabbath. This is an annual, nationwide, interfaith observance, devoted to encouraging faith communities like ours to support organ donation.
The need for life-giving donations is very great. In fact, by the time I am done speaking, a new name will have been added to the waitlist of more than 115,000 Americans waiting for an organ or tissue donation.
In Texas, more than 10,000 people are waiting. About 80% are waiting for a kidney, liver or a heart. Others wait for corneas to regain vision or tissue grafts, such as heart valves.
As I begin, I’d like to take a moment to recognize my husband, Adam Berliner and my dad, Bob LaRosa, who travelled from Dallas to be here tonight. I want to say, with my deepest gratitude, thank you and I love you.
Now let’s see a show of hands, if you’re comfortable. Raise your hand if you’re an Organ Recipient (we had 5 in attedance, see picture below). Now, if you’ve been a Caregiver to a recipient, let’s see your hand, too. None of us would be here without those who have so lovingly taken care of us!
Now I turn to the rest of the congregation, if you are comfortable sharing by a show of hands: Who here is a registered organ donor?… Okay. Let’s see if I can persuade some more of you to get on my bandwagon.
Johnny Costarell (L), 2 time heart transplant recipient; Jennifer Berliner, a heart transplant recipient; Ali Endlich, a double-lung recipient; and Lem Bradshaw (R), 20 year heart transplant recipient.
If you had told me that in my lifetime I would have a heart transplant, I wouldn’t have believed you. Sick people, other people receive organ transplants. It actually took me a few years to overcome my disbelief from being told that I might need a heart transplant to being psychologically ready to receive the ultimate gift. It took me a lot of time in therapy and counseling with Rabbi Folberg, for me to be in a place that I could be OK with receiving a heart transplant, while at the same time honoring my unknown donor.
It turns out that organ donation is very Jewish. Rabbis and scholars across the spectrum of Jewish life have elevated organ donation to the status of mitzvah chiyuvit, an obligatory commandment, that fulfills the mitzvah of pikuah nefesh, that of “saving a life.” Scholars and Rabbis across the spectrum of Jewish denominations, including our own Reform Movement, unanimously support organ donation as a life-saving mitzvah (a good deed.)
But how did I even come to need a heart transplant?
Shortly before I turned 15, I was diagnosed with bone cancer. I had chemotherapy for 13 months, radiation treatment and several surgeries. One of the chemo drugs I took is known to cause heart conditions. Knowing I was at risk, I had routine echocardiograms and 8 years post treatment, I started showing signs of heart failure. In retrospect, I attribute most of the health problems I faced later in life to that early exposure to chemo and radiation therapy.
In my 20s, I had fair to good health with only a minor heart problem. I attended college and graduate school — Go Longhorns! — and become a clinical social worker. I also got married to my amazing husband, Adam, and we settled into our first home. Early in my profession, I was a hospital social worker, which was helpful to me later in my transplant journey because it has helped me navigate the complex medical world. However, my primary career was providing outpatient counseling to children and adolescents.
I have a special affinity for working with kids dealing with anxiety. I suppose the saying, “Heal Thyself” is true, because anxiety is something that I’ve battled for many years. As you can well imagine, having to deal with chemo treatments as a teenager didn’t do my anxiety any favors. To make matters worse, back in the early 1990’s, the notion of adolescents needing treatment for anxiety was just being recognized by the psychiatric community, but it was unheard of to give a teen medication, even for intense anxiety. Having to face my difficult treatments without pharmacological support, I turned to mediation and prayer. This is when I started my now ongoing conversation with G-d.
Prayer has provided me with both great relief and a place to put my anger. Likewise guided meditation, a practice I started as a teen, is a gift and a powerful coping strategy. This is part of how I stay positive in the face of adversity. However, what really keeps me going when I face difficult times, are the friends and family that I refer to as my Tribe. I consider this congregation part of my community and my Tribe. So many of you here tonight have directly contributed to lifting me up, and I am grateful to you.
In June 2015, I received a call that changed my life forever. My Mum went to the ER with what she thought was food poisoning and was instead diagnosed with terminal ovarian cancer. I went to Dallas to be with her and ended up staying there for two years. A week later, after her diagnosis, I was hospitalized and told that it was time for me to get a Heart Transplant. My life felt unmanageable. I had intense anxiety and at times it felt like people were speaking to me in echo because I could barely process the information.
A thousand horses couldn’t drag me away from my mother, even though we were in separate hospitals in Dallas.
Then I learned that my insurance would not cover my $1.2 million dollar treatment bill in Austin, because it was out of network. So I had my transplant in Dallas, which allowed me to be near my mother and support system, but it wasn’t so good for my husband, who had to commute to and from Dallas for two years.
Still, I was relatively lucky to live in Austin. Texas has 25 transplant centers, mostly clustered along the I35 corridor between San Antonio to Dallas and over to Houston. If you live in West Texas you will be driving hours to reach a transplant center and you will mostly have to move near your center when on the waitlist, so that you can be nearby when you get The Call.
The decline in my heart functioning was gradual for several years, then as I was getting on the waitlist my decline moved much faster. I received pacemakers and cardiac drugs to manage my congestive heart failure, but transplant was the only way I was going to live.
It took me six months to get on the waitlist and then a speedy 90 days to get an 0+ heart that fit my body size. This was surprising since the average wait time for a heart is 2 years.
I was 39 years old when I received my heart transplant. I don’t know who my organ donor is and I’ve written a letter to my donor’s family, expressing my profound gratitude. They have chosen not to engage me and that’s ok. While I am curious, I want to respect their privacy.
By the way, one donor can save or heal up to a mind-boggling 75 lives between organ donations, corneas and tissue grafts, including heart valves. I’d like to think that my donor family is overwhelmed by many requests to meet them from all the people their loved one saved.
My recovery was slow, or at least it felt that way to me. I experienced a few dangerous and painful complications that are not typical. I had to work my way back to walking, feeding myself and dressing.
My Tribe kept me afloat during my transplant and recovery. My Mum’s oncologist gave her a short break from her chemo treatment, so that she could visit me in the hospital, allowing my Dad, who was her Caregiver, to spend the night at my hospital and give my husband a night off. My husband and dad alternated spending nights in the hospital for nearly a month.
They say it takes a village and I am forever grateful to my village. There is so much that needs to be done during a major illness. My friend Callie Meyer, is here tonight and she cared for my two dogs at the drop of a hat.
Three months post-transplant, I discovered that I had breast cancer (another late effect of that early radiation and chemo) and that my treatment would be a bilateral mastectomy. I had to wait over 6 months for this surgery because the transplant team felt I was too vulnerable and were concerned about my survival. The first year after transplant I was fragile like a newborn baby!
Many of you’ve probably seen me wearing a face mask to protect me from infection. Now so much stronger, I still enjoy wearing my collection of cute and clever face masks (especially during flu season).
Sadly, as I was recovering from my breast reconstruction, my Mum passed away. Words can not express the depth of my grief. Her name was Janon LaRosa. May her memory be a blessing.
The Rabbis teach us that a sermon must always conclude with a “nekhemta,” a word of comfort and hope, and that’s how I want to conclude this account of my life and heart transplant odyssey tonight.
As difficult as that journey has often been, I must tell you that it has also been filled with cherished moments with my family and friends, my Tribe. My transplant and recovery have enabled me to see my 5 year-old nephew take his first step and speak his first word. It allowed me to hold my Mum’s hand when she took her last breath.
The gift of organ donation has blessed me with time, precious time with the people I love the most, sharing some of life’s most important events. And it has made it possible to share my story with all of you, right here, tonight.
I could give you statistics and cite Torah and Talmud verses to promote organ donation, but it is my hope that by telling you my story of survival and overcoming the odds, I will encourage you to register as an organ donor. You, too, can choose to give someone like me the gift of life, hope and precious time.
In closing, please join us up at the bimah after motzi when we break bread. Lem Bradshaw can register you this evening to be an organ donor by scanning your Driver’s License, or you can register at DonateTexasLife.org.
Thank you and Shabbat Shalom!
Thank you for taking the time to read this post. I really appreciate your support and feedback. I read and respond to all my comments and DM’s.
I’d like to thank Brittany Painter for taking video of this special evening. Also, my gratitude to Rabbis Folberg and Levy for helping me to craft my words. My thanks to Sherman Lemuel Bradshaw for helping me to reach my audience and for registering organ donors. I’m grateful to my Dad, Bob LaRosa for driving 3.5 hours to attend. I’m also happy to report my Dad was registered that evening to be an organ donor and that makes me feel proud.
To become a registered organ donor or to verify your registration, check out: Donate Life.
Here is my YouTube channel with many more videos: