The dark side of Transplant-
I write this today not to create a disturbance in you or to complain about this life-saving process.
I write this today to finally reclaim a balance in care and offer ways to improve on subjects that are left unsaid, often the elephant in the room for many of us patients.
I will start out immediately by stating this fact.
There is a grossly out of balance and often unrecognized mental, emotional, and spiritual level of care throughout the process of organ transplantation. I say this after 10+ years of deep research, counseling patients, and embodying the process not once but twice over a 20 year period.
This piece is not about to me…not to boost about how awesome I am doing now, not to advocate for organ donation, and definitely not to sugar coat this for anyone but rather to advocate for transformation in "how" this process actually looks and "how" we can begin to treat the patient as a whole complex that espouses not simply a physical component but rather the trifecta that we are as human. The mind, body, spirit complex, all of which are active differently along the process to authenic healing and better long term patient outcomes.
To offer context, let me give a little background about my story;
I had a rough upbringing as a child. Born to very young parents who barely knew themselves, my early years constituted of me dealing with my emotions through dance balanced with periods of deep self-reflection and even isolation. I always kept a small tight circle of friends and as young as I can remember I sought pleasure out by feeling the feelings of others and attempting to transmute any pain to make them happy, often at my own expense. A tremendous lesson needed to be learned- to empower my empathy.
After many years of me attempting to help others whether it be by means of teaching yoga and meditation classes, doing massage therapy for those in chronic pain, or counseling (talk therapy) to anyone at anytime to help them get through a difficult situation, and suddenly at 21, it was my turn to develop a self care regime and the price it cost was almost my life.
See at 21 I was diagnosed with systemic lupus which led into complete kidney failure by 26.
I was a hemodialysis and peritoneal patient for 4 years before my first transplant at 30.
I cannot explain how difficult my life was during my 20’s. All I will say is that if I didn’t have a good team of professionals (which I had to arduously seek out), and my experience of emotional and spiritual practices, I would not be here today.
Post transplant #1, I gave up a desire to be in the medical field (I was in nursing school at the time), to pursue my passion of teaching yoga, meditation, and mindfulness practices to those who were in need of emotional support outside of what the current medical model offered).
That said I am not opposed to traditional modern means of treating mental health. But after running 3 yoga studios over a 15 year period of time, I can say with certainty that more so than not, antidepressants, psychotropics, anti-anxieties are simply NOT enough. People need more effective ways when things are out of control.
After an early life of living an exceptionally healthy lifestyle (pre-diagnosis), I too came to the hard truth that natural medicine would not be enough for me going through kidney disease but also that the traditional medical models offerings would not be enough either.
What saved me more than once and still does is the merge of science and spiritual medicine for my optimal health and mental/emotional wellness.
My vision had always been to find a way to combine this into the current treatment plan for transplant patients, if they so desire. It can take a willingness to try these practices because unfortunately many people make preconceived notions and decisions based off of an outdated belief system or simply out of an insecurity or judgement maybe seen on TV or heard from a friend. I will say that incorporating yoga and mindfulness not only helped me greatly with the excess of stress that this process can initiate, but also with facing my fears, moving through the process with deeper understanding and grace, and very importantly helping me to re-integrate into life post transplant.
The truth is according to a study on kidney transplant patients post surgery, is that over 90% experience periods whether chronic or acute of depression and anxiety, but also that the re-employment rate can be as low as 10-15%. This simply is not ok and I believe it is way overdue to address ways in which we can support the patient not only though the process, but afterward as well. In fact the transplant is often glorified by the team of professionals (as we all know it can be an extreme high after years of waiting). But with every high comes an equal and proportional low as many patients face post transplant after loosing many years fighting for life only to find a tremendous lack of post transplant resources, i.e…job assistance, financial burdens from medical bills and medications, and most importantly ways to live life with less anxiety, fear, and depression.
Many of you have no idea who I am….But I am a most positive person who seeks to offer hope and love to all I come across. But I also have a side of me that craves justice and harmony and what I refuse to do in this new year is ignore this side of the process.
If we’re not truthful how do we make change?
I do not have all the answers proceeding, but what I have been actively working on is creating an organization to provide resources in relation to alternative mental health support systems, more assistance with job re-integration, and to simply offer a mature and emotionally intelligent platform where we can hold the space and honesty to share all the wonderful aspects of this process but not be afraid to speak of the dark side. It is through the dark that we rediscover the light and integrate to find peace and harmony. I believe we are all emotionally literate to understand this.
2x kidney transplant recipient
Spiritual Activist/Yoga Teacher