“At 14, I had just finished my first year of high school. I played varsity soccer as a freshman, and I was getting ready for one of the most important summers of my young soccer career. But my life took a different course, and from ages 14-24, I had to completely focus on my health. After my first blood draw–I received my diagnosis of FSGS.
During those initial years with FSGS, I did multiple different treatments, including high-dose IV steroids and chemotherapy. I’ve had two kidney transplants and had both my native kidneys removed. I had a staph infection that caused my first kidney to fail, and I have done a total of 4 years of different kinds of dialysis, as well as at least 20 other procedures. Through that time, managing my chronic kidney illness as part of everyday life, my family wondered, “How are you handling this so well?” I would unknowingly shrug and give a cliché line about needing to move on to the next thing.
Two years later, after numerous treatments and six months of dialysis, I received my first transplant. By 21, my body had rejected the kidney, and after three and half years on dialysis, I received my second kidney at 24 from a family member. I was a rock–in survival mode–for those ten years. Nothing fazed me. In times of pain or frustration, I would be upset but subdued. Once those moments would pass, so would the thoughts about them. It always looked and felt like I was doing great, and I was so strong that not even this illness was going to weigh on me.
Everyone’s perception of me was that I was handling this difficult part of my life well. I didn’t realize until about a year ago that the pain, although I wasn’t thinking about it, was still affecting me.
Three and a half months after my second transplant, I traveled for the first time in four years without a dialysis machine. I was ecstatic! My brother was playing in his first away college soccer game for Sacramento State, and I was going to get to see him play. For my brain, it was the first quiet moment it had in my adult life. I was sitting in my friend’s bedroom in LA the day before the game, and nobody was home. I couldn’t stop thinking about the pain of my second transplant. I felt trapped.
Then, as I sat on the bed with my legs stretched out and a blanket over them, TV in front of me, the way I had in the hospital, the bedroom seemingly turned into a hospital room; the house became the 8th floor transplant ward at UC Davis. I stayed in this state for almost eight hours until my friend walked in the door. I was numb. I had relived the entire day in a hospital room. I now realize that this was my first time experiencing severe Post-Traumatic Stress Disorder symptoms.
This incident confused me, and when I got back home, I started to do some research. It didn’t take long to find out that post-transplant patients, while having lower rates of depression than pre-transplant patients, have significantly higher rates of depression than the general population.
Was it possible I could be depressed? A wave of guilt washed over me. I was depressed after receiving one of the greatest gifts of my life.
Sure, I had three surgeries: transplant, peritoneal dialysis catheter removal, and a biopsy. I was not able to return to work or school. I was in pain most of the time from the recovery from the surgeries and muscle atrophy. I knew it was going to be difficult, but now it felt as though I had lost control over my mind. That mind, my support group, and my grandma’s home-cooked meals were what got me through all of this. Now, it felt as though I was trapped. I understood this amazing thing had happened to me, yet I was simultaneously reliving the most difficult moments of my past ten years – the moments that I never would wish on anyone.
Since I had discovered it’s so common for transplant recipients to experience PTSD, depression and anxiety, I thought surely my transplant team at the hospital would have a plethora of resources available to help me. This, unfortunately, turned out not to be the case.
In my next appointment with UC Davis, I talked to a social worker. That was the most UC Davis had to offer. When I asked for the opportunity to talk to a therapist, they told me that they didn’t have one for me to see, and none to recommend outside of the hospital. The social worker then informed me they wouldn’t be able to see me regularly. I was on my own to find a therapist who was qualified to help in what felt like a very specific need.
I was astonished that one of the top kidney transplant facilities in the nation didn’t offer any mental health services post-transplant. This started a year-long journey looking for somebody with experience in chronic illness– someone who could help with the mental health struggles I was facing. I set up one appointment with a trauma specialist that my family recommended. During our visit, they told me they believed I had PTSD. At first, it was hard to accept. I did not believe them. I thought that was only for war vets and people who had gone through something truly traumatic. That wasn’t me.
While my search for support continued, my mental health became more of a challenge. About one month after my first incident in Los Angeles, I learned that a player I coached in soccer was diagnosed with a rare auto-immune disease (unrelated to the kidneys). This news sent me into a severe depression that I was not equipped to get out of. When I finally overcame it, I knew–yet again–that I was in need of professional help right away.
I set up a series of initial appointments with different therapists and went through a frustrating time. I had a hard time finding someone who took my insurance and who also had experience working with patients that had chronic health conditions and experienced the same mental turmoil that I had. My diagnosis of PTSD took a long time for me to accept, and even longer for me to begin meaningful treatment.
I felt a lot of shame about the idea of my kidney transplant being labeled as a trauma. This was meant to be the solution to years of battling a difficult illness and now it felt like an extended part of the illness, which left me with a feeling of failure.
What I didn’t know for the first ten years was that the “rock” that I had been was a defense mechanism–a way for me to survive the trauma in my life. I had just simply avoided processing it. This is why, after my second transplant, the pain that I hadn’t processed before was emerging in a way that I had very little control over.
I got my first transplant eight years earlier, when I was 16 years old, but I lost it to a staph infection that put me in the hospital for three weeks and nearly killed me. I’d done a total of four years of dialysis before the two transplants (six months before the first transplant, and three and a half years before the second). I have done chemotherapy, high-dose IV prednisone, and a number of other treatments over the past ten years.
The second kidney transplant was the tip of my PTSD iceberg, which I had ignored for all too long. I received the transplant on July 3, 2017. I stayed in the hospital for seven days after and in a hotel close by for another week after that. For four days in the hospital I had high fevers because of the immune suppressants that I was on. I had eight different IVs because of the iron treatments I was receiving. I had blood drawn every morning at 5 a.m. They removed a nerve block in my side while I was awake. It gave me terrible leg twitches.
When I got to the hotel, I learned that the surgery had damaged a nerve near the incision, causing shooting pain in my groin anytime I tried to lay down past a 45-degree angle. Six weeks later, right when I was walking normally and getting into a regular sleeping routine, I had a surgery to remove my peritoneal dialysis catheter. It left me in bed for three days post-surgery. Another four weeks after that, I had my first kidney biopsy. This was the most minor procedure, but it still left me with some discomfort for about a week. My point is this: transplants are hard, long and invasive. Surgeries in and of themselves are traumatic, regardless of their purpose. Dialysis and treatments for kidney diseases are inherently traumatic for the entire support group, not just the person experiencing it directly.
I’ve been so fortunate to have a comprehensive and almost global support group: my entire extended family, my inner circle, my two donors, friends, work colleagues, NephCure, COTA, nurses and doctors (some of whom I still stay in contact with), and so many people that I have only met once or twice. All of them have been incredible and they are the reason why I am the person I am today (and as mentally fit as I am). I have seen the toll this takes on them. My entire immediate family and I are all in therapy now because of the difficulty of this process–not just because of the second transplant. I think we all wish that we started therapy earlier, and together. I had very little therapy in the eight years leading up to my second transplant.
The therapist I see now once told me, “People avoid or stop going to therapy when they need it the most.” For a long time, I turned a blind eye to therapy.
I did as much as I could to avoid processing the extreme difficulty I was facing in my life. I did this until I was in so much mental pain that I was forced to take action.
Don’t get to that point. Wherever you are in this journey, and quite frankly, if you’ve read this far, simply talking to somebody who has no connection to you and an expertise in mental health is something you need. You cannot and do not need to handle this on your own. Your support group cannot and does not need to handle this on their own.
Even if you do not have PTSD, depression, anxiety, or anything of the sort, therapy can help you process the difficulties we all face from being forced to be kidney warriors. Caring for your mental health can help you live a more balanced life–a life filled with joy.”