A biopsy is the removal of bodily tissue to diagnosis various medical conditions.
Some biopsies are more invasive than others. Over the course of my life I’ve had samples of my bone marrow, heart, liver, muscles and uterus removed from my body for further study.
My first experience with biopsies was when I was six months old. It was my only “open” liver biopsy, meaning instead of inserting a needle to retrieve a sample of my liver, the doctors made an incision and removed a more sizable piece.
That biopsy isn’t present in my conscious memory, but the scar from the procedure remains on my lower abdomen. My next biopsy was a bone marrow aspiration when I was two that I also do not remember.
When I was old enough to remember my biopsies, I began running into trouble.
Fragments of memory exist in my mind. A small procedure room at the Hospital for Sick Children (Sick Kids), lying on my side and having a doctor approach me with a large needle made even larger by my childish point of view I am sure. Pain. Fear. Restraint. Many, many tears and seemingly useless cries on my part. A strong antiseptic smell.
I developed a phobia of liver biopsies pretty quickly and, when I was old enough, insisted on sedation. I soon learned that all types of sedation are not equal as I remember being aware of my next liver biopsy in a fuzzy, out-of-body manner.
The feeling of watching my biopsy without being able to do anything about it contributed to my existing fears. I learned my lesson well, and for the following liver biopsy I made sure the sedation I received gave me what I really wanted: unconsciousness.
Unfortunately, during my unconsciousness the doctor performing the liver biopsy bruised my liver and ignored me when I said things didn’t feel right after it was over, resulting in a late night emergency room visit to deal with the worst pain I’d ever experienced in my life up till then.
By the time I realised how to successfully get through a liver biopsy with minimal psychological damage I had switched over to Sick Kids’ adult counterpart Toronto General Hospital (TGH).
The next liver biopsy I had, my first in an adult hospital, was in a shared procedure room. I hated my liver doctor at the time and that intense dislike increased when he insisted I did not need any kind of sedation and proceeded to do my liver biopsy with another patient in the room.
I had talked briefly to the other patient beforehand and although I was younger I had more experience in the field of liver biopsies and felt pressure to set a good example. I didn’t protest or cry, even when my “esteemed” doctor missed his mark and had to repeat the needle aspiration to get a proper sample.
My most recent liver biopsy was four years ago now, and the best one I’ve had by far. Privacy, mild sedation, no complications and excellent results.
When it came time for my first heart biopsy after my heart transplant I decided I wasn’t going to be afraid anymore. I was offered a mild sedative but I refused it, believing that I could handle the procedure with just local anesthetic. And I was right. Of course, my anxiety was greatly eased by the fact that my doctor engaged me in conversation about books while he worked. I’d never had that happen before.
Since then I’ve lost count of how many heart biopsies I’ve had. With each successive zero rejection level, the time between biopsies increases, but in twenty-six months I’ve never gone longer than three months between biopsies.
After being introduced to muscle and uterine biopsies in 2010, I would say uterine biopsies are most painful and invasive. Muscle biopsies are the least invasive, less painful than a uterine biopsy and take the least amount of time. Heart biopsies are the least painful if done right, and liver biopsies fall somewhere in the middle. Thanks to the five hour recovery time, liver biopsies take the longest. In my experience, sedation is most often offered for liver biopsies, then heart biopsies, and never for muscle or uterine biopsies.
On Monday, my kidneys will join the prestigious list of internal bodily tissues that exist outside my body. Since my childhood days I’ve come a lot way in dealing with biopsies, but the anxiety I’ve been feeling about it over the last few weeks has been intense.
Because there is more to biopsies than pain and invasiveness. Biopsies can cause an array of complications. They are used only to diagnose serious ailments that can’t otherwise be determined by bloodwork or other less invasive tests.
I’ve learned how to deal with pain and I’ve recognised that the doctor doing the procedure can raise or lower my anxiety level. However, I still have to deal with other formidable opponents: fear of the unknown, vulnerability and grief.
There is nothing like being on a table in a flimsy hospital gown, exposing parts of your body normally covered by layers of clothing to antiseptic, needles and the hands of a stranger. I hate the feelings of powerlessness and fear biopsies provoke in me, knowing my future health is going to be determined by what is being removed from my body.
When it’s a biopsy for my heart or liver, it is different, because I know the doctors are looking for rejection and can handle it if it occurs. The muscle biopsy I had was to explore the extent of my glycogen storage. Uterine biopsies are necessary monitoring for the drugs I’m on.
But my kidneys are still my original kidneys so I know it’s not rejection. Glycogen Storage Disease type 3a is not supposed to affect the kidneys. It’s possible my kidneys are damaged by the drugs I’ve had to take over the years. So right now, my questions exist without answers. What is causing my kidneys so much grief? What will the treatment be?
While biopsies are stressful for both my mind and body, they serve a purpose. I am seeking answers that a kidney biopsy should provide, even if I don’t like what they are.