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September 2019. Nine months after my double lung transplant, feeling as though I could take on the world, I did what any human would do with brand new lungs – I started crossfit, of course. This had never been an option before my transplant. It felt a bit extreme, but why not chisel this fab new body? In all seriousness though, I love a good challenge and I saw it as a way of celebrating my donor.
Before starting crossfit, I noticed my left hip felt a bit off. Nothing extreme, just a little crick when I walked. I ignored it, chalked it up to my recent increase in exercise, and I started crossfit anyway. We started out very conservatively, but by the next week the discomfort was still there, so my coach and I decided to take a pause to let my hip rest. 

October 2019. Even after a month of taking it easy, the discomfort turned into pain – now in both hips and my lower back. Muscle spasms kept me up most nights. Doctors and I were convinced it was just a pulled muscle. By the end of that month, the pain became intolerable most days. To add to that, a new kind of fatigue came over me that I had not experienced since before transplant. To top all that off, a strange new growth took residence in my throat. Painless, but large and in charge. 

November 2019. A fever was the last straw needed to land me in the emergency room at UCLA. By that point, the pain had me bed-bound. Exhausted, I prayed for answers. This was clearly not just a pulled muscle. 

Something was going on inside my body. Something wasn’t right.

Alone, I endured a myriad of tests. Labs. Blood cultures. Needles. X-rays. MRI. CT scan. An enigma to my doctors, they tested for everything they could think of. 

After waiting about 24 hours, still in the ER, a doctor entered my room. He explained that the MRI showed multiple lesions in both of my femurs, my spine, my liver, and throughout my abdomen. The lesions in my left hip had actually “grown through the bone,” causing a mild fracture.
Is this real life? I thought to myself. What is happening? 

Doctors couldn’t say what the lesions were from based on the scans alone. They would need to do a biopsy to know for sure. I was put on the schedule for a liver biopsy for later that day.

I called a close friend to ask her to be with me until my family, who lives out of state, could get there. Everything felt like it was moving so fast, I didn’t have time to process the news. 
Tumors growing throughout my body? What? A liver biopsy?

My sweet friend arrived, her presence bringing comfort and calm to my racing thoughts and anxious body. Shortly after I was taken up for the liver biopsy – a generally low risk procedure. 

….My eyes open to see a hospital room. From my hospital bed, I scan the room to see my friend sitting close by. “You’re all done with the biopsy,” she said. Immediately, a sensation comes over my body, and my mind shouts “something isn’t right!” I feel like I’m going to pass out – even though I’m lying down. Nausea and pain rush over me. The room feels like it’s 100 degrees. Now, in and out of consciousness, I hear nurses and doctors rush into my room. “Her blood pressure is crashing. Call a Rapid Response. Start another IV. She needs a blood transfusion!” 
My abdomen is in so much pain. My mind feels foggy. Fading fast. Needles poking me on every extremity – my feet, my arms – nurses working to find a vein somewhere. Why can’t they get a vein? Then, everything went black….

The next thing I remember is waking up in the ICU. My mom sat at my bedside. Disoriented and in pain, I wondered what on earth had just happened?

I found out that during the liver biopsy, an artery was nicked. It caused me to bleed internally. They ended up taking me back up to the procedure room to repair it, and once I was stabilized, I was sent to the ICU to recover. 

I was on oxygen – a familiar, yet unsettling feeling. I hadn’t needed oxygen since before transplant. A normally easy and straightforward procedure went very wrong. 

Disoriented, I was only beginning to try to understand the nightmare that had just happened. 
A couple days later, still in the ICU, a doctor came into my room. He brought me the news: “It’s Post Transplant Lymphoproliferative Disorder, or PTLD. A form of Lymphoma.” I had never heard of PTLD (as apparently it only happens to like 2% of post transplant patients.) BUT I knew the diagnosis of Lymphoma well. Too well. I had cared for many patients with it as a nurse. Now, it was a diagnosis in my own chart.

PTLD, put simply, is a type of cancer that is specific to post transplant patients. It’s caused by being immunosuppressed. Usually, our immune systems help identify abnormal cells in our bodies, but because my immune system needs to be suppressed to keep my body from rejecting my new lungs, that wall of defense was weakened and cancer cells grew out of control. 

SO, WHAT’S THE CURRENT PTLD UPDATE?
After undergoing two cycles of IV Rituximab – the first in December 2019 and the second in January/February 2020 – I am doing much better. Just a couple weeks after starting the infusions, my pain was gone! Thankfully, I tolerated the treatment with little side effects and I seem to have responded well to it.
I had a follow up PET scan in March of this year to evaluate how the tumors reacted to the treatment. The scan showed that the tumors in my femurs are gone, and the ones in my spine, liver, and abdomen are smaller. While there are still lesions present, they are resolving and the Lymphoma is not actively growing. Thank God!
I will have another PET scan in October 2020 to check in and see if the lesions that were present in March are still there or not.