‘Truth in transplant’: Gratitude and suffering coexist after ‘the miracle’
Quality of life after lung transplant shouldn't be a taboo topic
Amy Silverstein’s second memoir, “My Glory Was I Had Such Friends” (2017), left a lasting impression on me. It wasn’t just because of the way Silverstein’s devoted friends attended to her while she awaited a second heart transplant, or even how that story mirrored my mom’s lung transplant story. It was the impact of one thing that many transplant stories lack: the whole, and sometimes ugly, truth.
Silverstein spent most of her life caring for not one, but two transplanted hearts. She suffered side effects from the rigorous medication routine and countless invasive surveillance procedures for 35 years before she ultimately died of lung cancer — a disease she attributed to her long-term use of immunosuppressants.
In her final weeks this spring, she published an opinion piece in The New York Times describing what she termed the “gratitude paradox,” wherein transplant patients are “expected to see their disease state as a ‘miracle.’ Only in transplant is there pressure to accept what you’ve been given and not dare express a wish, let alone a demand, for a healthier or longer life.”
All of the transplant patients that my mom and I know have had to grapple with this complicated emotional dichotomy: the miracle and the desire for an easier and safer way to protect it.
But just as the gratitude for a prolonged life, thanks to a donated organ, can sit beside the grief for a failed native organ, frustration and despair can walk beside a miracle.
What Silverstein’s advocacy did was make space for the complex emotions and yearnings of transplant patients to be shared. Her #TruthInTransplant campaign calls for “improving the quality of life and longevity of transplant recipients through personalized, modernized transplant care that moves beyond antiquated immunosuppressive drug regimens and excessive invasive tests/procedures that fail to sustain graft health/survival long term.”
So what does truth in transplant mean for my mom?
The first truth is gratitude. My mom urged me to share her woes in this context. “It’s all worth it,” she said. “I’ve not come across anyone who regrets having a lung transplant … even the few who did not fare well or survive long.”
The second truth: suffering. Psychological, physical, and social pains, new diagnoses, and more procedures have all been parts of my mom’s story.
Psychological and social pains
Having idiopathic pulmonary fibrosis was traumatic enough, but my mom’s acute exacerbation of the disease led to four months of intensive care hospitalization before and after her transplant. For a long time after she was safely back home, she had post-traumatic stress disorder symptoms that kept her up at night.
One of the things she wanted most from her transplant was the chance to spend quality time with friends and family. But exactly one year after her transplant, the world shut down because of COVID-19. Her social life was snatched from her grasp and replaced with extreme precautions that she maintains even as much of the world moves on.
Physical pain
In the year after her transplant, my mom had back and chest pain. As her sternum healed and her rib cage slowly adjusted around her new lungs, those pains lessened, but other pains arose.
Osteopenia (low bone density) became osteoporosis — a common side effect of long-term prednisone use — and her joints suffered. Weight gain and muscle loss (more delightful side effects of prednisone) haven’t helped the cause or her self-esteem.
The prescription for losing weight and gaining muscle is, of course, exercise, but bilateral meniscus tears in her knees thanks in part to — you guessed it, prednisone — make it hard for my mom to do rigorous exercise.
But wait, there’s more! My mom’s skin is so fragile that it bruises or tears at the slightest bump. That means she’s almost constantly managing wound care so she doesn’t get an infection, which could be disastrous. Partly because of Eliquis (apixaban), a blood thinner, she’s regularly mopping up unsettling amounts of blood from even the smallest scratch.
New diagnoses, procedures, and surveillance
Alas, the skin problems don’t end with boo-boos. Since my mom is chronically immunosuppressed to prevent the rejection of her donated lungs, her body can’t fight off cancer cells as easily. That’s led to multiple squamous cell skin cancers, which she’s had removed. Regular skin exams and other cancer screenings are a routine part of post-transplant care.
All of this crappy stuff is part of my mom’s transplant story — just as wonder, gratitude, and joy are. My wedding wasn’t any less joyous because we had to wear masks. Sunset walks and bike rides aren’t less wondrous because her body hurts. All of it goes together. She’s grateful and there could be improvements.
So here’s hoping there will be improvements — for this generation of transplant patients and those to come. Sharing our whole truth will help us to get there.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Mary Ellen Black
It is sometimes the strength and valor of one or two “warriors” who bring truth to power and touch the touch the hearts and intellects of those most vulnerable. Even a heartfelt ‘thank you’ could never be enough.
Jay Johnson
A well written article that asks some of my same questions. I only wish I could read the linked NY Times opinion piece without paying for their subscription.
Anne Strickland
My husband is almost 4 years post double lung transplant. He has had almost zero complications and is on very little medication. Our life together is exceptional.
My husband is constantly working with his transplant team to get off everything possible. He had his transplant 3 weeks before COVID hit so he didn't have to have all the biopsies he would have had under normal circumstances.
I so agree with individual care plans for transplant patients. For us, it was not trading one disease for another. For us, it's the miracle of a life with new lungs.
Karmen Seltz
Thank you for writing this. As my mother's primary support when she went through her transplant it was a lonely place to be. She died 3 1/2 months after her transplant and did not make it out of the hospital. A conversation about common complications and difficulties after the transplant were definitely not a part of the presurgical consultation. I am glad that it works out for some people because there are many of us who still do not feel like they have a voice. I returned to the information given to which is part of UMOS and it really only hits the highlights. I hope that a discussion about quality of life becomes more important in the future because the best outcome stories are the ones that health systems are quickest to reference, but that is the tip of the iceberg. And beyond all those things I also hope that things like palliative care post transplant can become commonplace as well. At the end of my experience, I have been left with the feeling that transplant medicine is one of the least transparent branches of medicine. As a mental health therapist and family member of several other medical professionals I thought I understood but the experience was a very harsh teacher.
Mary Sprinkle
I have been diagnosed with Progressive Pulmonary Fibrosis. I have a terrible time breathing mostly in the early mornings. I am not a candidate for a lung transplant and not sure I would do it if I was . Some of the medications helps but there is no cure and it will only get worst. I pray God will heal it everyday. So sorry to hear about your Mom. She went through a lot. I desire your prayers. I know you don't know me but God knows who you are praying for.
Kat
I like this more open conversation. It is a beginning. I would also like to open the conversation to comparing transplant centers and their methods. For example, which ones keep you on more medications longer, which ones tend to wean you off medications sooner. Which ones tend to be more restrictive, etc. Sharing our experiences help the programs to be more accountable as well. The secrecy seems to do a disservice to the patients and we are trying to do our best to make choices for our lives. We need more openness all around! Less secrecy - more open discussion and honesty!