This article was written by a 23 year veteran of kidney disease and someone whom has experience with Hemo-dialysis, PD, and 2 Kidney Transplants. She also has experience with near death, extreme financial hardship, denial and rejection for receiving proper support from systems post transplant, homelessness, and more.
Her mission is to broaden our horizons with improving life post transplant. Something that’s never been fully addressed in a system that is crying out for evolution and upgrades. This piece in not intended to deter anyone from Transplant. Please do it if you can. This piece IS intended to set out a clarion call for better support post transplant.
-Trigger warning ahead-
This may not apply to you, but just maybe you can “see” beyond yourself and understand this great need.
Organ donation changes lives. There is no doubt that this live saving process is miraculous and deserves more attention. But an aspect of this often long complex process that is grossly overlooked is what happens after one receives the “gift of life”.
If one has little knowledge about transplants, one may assume this altruist offering provides ones life to completely return to normal. The reality is, this is far from the truth.
My speciality is bringing awareness to post transplant life, including complications, accomplishments, and ways in which we need to improve current models and systems to make the aggregate assumptions more accurate.
As a 2x transplant patients myself, I can say whole heartedly, that life has polarized and navigating these 2 extremes can be very difficult. I have been blessed to have had my prior career and experience in authentic wellness. This includes a primary focus on biopsycho-spiritual ways of overcoming great challenge.
If (a 15-year yoga and wellness studio owner) struggle with having 20+ years
applied knowledge in transformation, I cannot help but think that others may too be struggling with the roller coaster of complexities post transplant.
I have spoken to patients whom simply keep quiet regarding the difficulties because they “are to be grateful”. Many just don’t know where to begin and often get consumed by the journey. This creates cognitive dissonance because we are grateful but this gift comes with a price often literally and figuratively. A battle between what we think as opposed to how we truly feel. The reality for patients is the transplant is simply the beginning of yet another journey. We fight with gratitude and humility, but the war is far from over. It is time we offered a voice for these patients.
I want to bring up a valid point here. How your life was pre-transplant often determines the foundation of how your life may be immediately after transplant. Or as for many of us, it completely breaks down into a pile of mush before we begin a process of rebuilding post transplant. Relative matters such as your age, your family support system, your financial means, your work or whether you have a trade or skill that’s still accessible all affects a big part of your success post transplant.
If you are in the ideal circumstances pre-transplant, for instance, are fiscally sound, have wonderful relationships and familial support, have a good job or trade or skill that offers a high quality insurance plan, and you have minimal post transplant complications or time off work, transplant many be a most glorious process for you.
But the reality is this is not the case for the majority of transplant patients. Things are just different post transplant. Understand and comprehend that bringing these truths to the surface are not for you to take personally. Maybe this article doesn’t pertain to you. But have the emotional intelligence to understand that my words are to encourage and shed light so transplant patients around the world can truly live in the ways intended post transplant. Transplant is intended to extend and improve life, let’s start recognizing that post care is not a luxury but a necessity.
Work and post transplant is a huge issue.The reality is, we as patients must forever and daily take expensive immunosuppressive drugs that can cause life altering side effects. This doesn’t include any complications from the pre-existing condition that caused the organ failure. All of this creates a set of complex challenges as work doesn’t often take into account for needed time off for complications associated with the transplant. By all means this doesn’t describe all transplant patients. We do not currently take into account the complications, financial hardships, often loss of employment that can culminate and lead to conditions such as chronic depression, anxiety and CPTSD.
The point here is as transplant patients, we have lived and understand fully what it means to get comfortable with the uncomfortable. Often having long periods whether chronic or acute living in survival mode. Survival mode is a natural response when faced with immense pressure or you're being chased by a lion. But the body and mind isn’t made to live chronically in survival mode. This wreaks havoc on the body and the nervous system primarily and definitely affects the health of the patient. The last thing a transplant patient needs is to continue this cycle post gift of life.
We need this conversation to be opened up. Transplant patients deserve to know the authentic process and how very challenging this can be post transplant. The system needs to do a better job accounting for personal cases, offering tools and support so we can return back into life to live, as what’s the hope in transplant. We often hear “new lease of life” and transplant used simultaneously. But if my new lease of life will force one back into survival mode and in states of daily overwhelm, financial hardship, fears of loosing insurance, medicare, or struggling to pay rent or my medications, I can see how someone might think twice. Certain people are fortunate to find loopholes and the national or state organizations that do work for them and those organizations should be a shining example. Most often than not, the stresses of getting our needs met are a constant struggle.
Transplant is our best option for organ failure and I will always promote it. Dialysis and I didn’t get along swimmingly and the “freedom” from the machine is an incredible blessing. What I never expected was the bondage I feel post transplant. Can you open your mind and “see” that living is a miraculous blessing that I will forever honor. But there is a huge weight associated with this gift. One must have touched this level of polarity within themselves to fully comprehend that one can be happy and struggling at the same time. If you live with a binary (one way or the other) mind set, this all will simply go over your head and most likely you’ll have an emotional reaction.
Its time to upgrade the system, offer authenticity, and begin an initiative to further improve transplant patients lives post transplant.
Advocating for organ donation, transplant, research and development to further supply organs is no doubtedly noble. With greater possibilities for transplantation we need more effective tools navigating this process, which is lifelong by the way. Our systems in many ways are broken and someone needs to open this dialogue. Nothing changes if nothing changes they say.
I speak for the aggregate, the majority. And it’s about time we face the totality of this journey and work together to create better outcomes with re-employment, hardships, and life post transplant.
113,000 men, women, and children are on the national transplant list
36,528 were transplanted in 2018
20 people die waiting each day
58% are signed up to be an organ donor (let's increase that)
Every 10 minutes someone is added to the transplant list
~OrganDonor.Gov
Stephanie MoDavis is a passionate advocate for human rights. Her speciality is a psychospiritual approach to chronic illness or complex transformation that is intended to be coalesced with the traditional medical model (whether bio or psychological) to offer a complete healing experince mind, body, and spirit.
At 21 she lost function of her kidneys after being diagnosed with systemic lupus. Since her diagnosis, years of dialysis and receiving 2 kidney transplants, she managed to own and operate 3 yoga studios and coach countless patients and non-patients alike in the art of transformation during extreme crisis.
She currently resides in West New York.
StephanieMoDavis.Com