Antibodies, shmantibodies 💁

A key part of being screened for the organ donation process is an antibody screening test. Human leukocyte antigen (HLA) testing is a simple blood test that shows if your body will make antibodies against the donor's HLAs. If your body makes antibodies against the donor's HLAs, it will likely attack the transplanted kidney and reject it. This is called being sensitized.

You can develop HLA's a number of ways, but the most common causes are blood transfusions, transplant and pregnancies. 😬

I have been pregnant a total of 6 times, with only 2 live births. I've had two early miscarriages. One late miscarriage and one pregnancy that had to be terminated by fetal risk and medical issues.

I have had five blood transfusions over the years. I have chronic low hemoglobin and life threatening anemia.

I expected the worst.

After having my HLA test I readied myself for worst case scenario news. I thought, expect the worst and you can't be disappointed. To my surprise when I inquired about my results at my clinic, I was told my test came back showing no antibodies. Stunned, I questioned another member of my team and was told the same news: I showed no antibodies.

Last Wednesday on June 30th, I traveled to the UHN (Toronto General Hospital) Kidney transplant center to start my multi-step orientation. I was excited, apprehensive, anxious...all the feels.

Meeting with my transplant doctor, I was shocked by how quick and fairly superficial the initial meeting was. I had not been given a agenda on arrival as was the norm and when done speaking with the doctor on vague specifics (risks, benefits, medical history etc.) I was excused to go onto my next step.

I anticipated needing to meet with a social worker and my caseworker. Neither of these were part of my itinerary. Surprised, I asked for a print out of my days appointments.

It was revealed that I only had two appointments that day. First, was my meeting with my doctor. That was already done. My next appointment was three hours away, an ultrasound to check my veins for function.

That was is.

Huh.

It suddenly popped into my head that this was a vast departure from regular process. It didn't escape my notice that despite COVID-19 and the new processes that were being adopted because of it, most everyone seemed to have the regular long lists of appointments.

In my head I questioned why I was an exception. And the only niggling doubt that lingered in the back of my head was my suspicious lack of antibodies. Wanting some resolution I requested to speak again with my doctor.

I was told I'd have to wait some time. So I took a seat in the public waiting area. A while later my doctor approached me to see what I was questioning.

I told him that I'd already been told that I had no antibodies from my previous HLA test, but that something about that result didn't ring true to me.

I immediately saw an emotion flicker across his face. Him being a stranger to me it was unreadable. But the pit of my stomach, which lurched with reflexive nausea seemed to read it just fine.

My doctor informed me that I am as in actuality, 89% antibodies. A number extremely high and difficult to match; "But not impossible! We'll find you something... eventually."

He mentioned that there were possibilities, a new process that removes HLA's and replaces the body with new plasma. A treatment unavailable to high-antibody patients only years ago.

Leaving me in the waiting room, the doctor went to speak with his next patient.

I sat there, in the public waiting room, utterly alone. My mind rocked by the news that I thought I was ready for. Tears came to my unwilling eyes and embarrassed at not being able to control the sudden flood of emotions that gripped me like a vice, I did my best to conceal my distress.

Driving to the city that morning, I'd felt cautiously optimistic about the process. I had been excited to throw myself into the next steps of this fight and ready to tangle with all the hurdles ahead.

However, in that moment I felt utterly defeated. To be honest, despite the happy-go-lucky face I present to the world, the weight of the thrice weekly, gruelling 4-hour dialysis sessions has begun to weigh heavily upon me. It hurts just to live daily now. Everything is hard. I'm always tired and mostly feel unwell. And for the first time, I felt a thought that crosses most dialysis patients minds at least once:

"Maybe I should just give up. This is no life to live."

It shocked me. I was rocked. I reached out to my blissfully supportive friend Anne and vented. I indulged in a very embarrassing public cry. Then I flicked through my phone to look at pictures of my babies.

The day before had been my autistic son's 12th birthday. He needs his Mom, and likely always will. Similarly, my daughter has her own complex needs. I don't have the luxury of giving up or the ability to indulge in much self-pity.

So I stood up, gathered my belongings and wayward emotions and marched my ass.onward to my next appointment. Another disappointment- it could have gone better. But I'll keep facing disappointing results, because life is unfair. It's brutal and hard.

I have things and people to live for. Work to be done. So I will pick myself up and do my best to dust off my battle weary-self; and for now I live to fight another day.