Enema. Catheter. Angiogram. Epidural. I did not plan
on these words being part of my vocabulary at age 21.
These procedures were ones that my grandma and her friends talked about, not ones healthy university students discuss. I also didn't plan on saving a life at age 21.
It began in autumn 1999, when it became clear my younger brother Massis needed an immediate kidney transplant. We had known for 12 years this day would come, but had not anticipated its sudden arrival. Massis had been infected with e-Coli bacteria when he was two and hospitalized for a couple months. He acquired Hemolytic Uremic Syndrome (HUS)--a condition that results in the inability of the kidneys to filtrate, causing a build-up of toxins in the bloodstream. HUS caused irreparable damage to his kidneys; his kidney function plummeted to 42 per cent and slowly decreased as he got older.
By fall, his kidney function reached 13 per cent and steadily approached the critical level of 10 per cent. He would need a transplant or have to undergo dialysis, a treatment that requires regular visits to a hospital to have a machine perform the work your kidneys can not.
The function of kidneys
Essentially, the kidneys are responsible for filtering waste products from the blood, and maintaining the salt and water balance in the body. The functional unit of the kidney, the nephron, is a series of tubules that process the blood, and removes certain end-products of metabolism such as urea, creatinine, and uric acid from the blood plasma. The nephrons also reabsorb useful items such as water and electrolytes, and eliminate toxins that would otherwise build-up in the form of urine. When nephron function is impaired, improper filtration occurs resulting in: accumulation of toxins; increased strain on the heart, which leads to hypertension; and inadequate elimination of toxic material.
As my brother Massis' function decreased, symptoms of advanced renal failure set in. He was tired, had little to no appetite, suffered from dizzy spells, increased susceptibility to colds, and had bouts of nausea.
At the same time, my mother and I started preliminary donation match-up work. We were narrowed down as possible donors because of our age (you must be over 18) and general good health. This involved routine blood work, an abdominal ultrasound to make sure we had two kidneys, urology tests, ECG monitoring, and consultations with doctors.
My mom was ruled out because of borderline high blood pressure and then I was asked if I would consider donation. My nephrologist and the donor program coordinator explained the risks and benefits to me, but my mind was made up. I didn't have to think about it. It's my brother--of course I would donate.
I was told that a two-hour surgery would take place at the Children's Hospital, and I would be in for approximately one week. After that, I would nurse a 20 cm incision and be prohibited from strenuous activity for a couple months. It seemed pretty simple.
"How would my remaining kidney fare solo?" I wondered. Post-surgery, the remaining kidney would enlarge slightly to accommodate the extra work load and within a couple months, function would return to 80-90 per cent. The whole procedure seemed way too easy. I mean, I was donating an organ, shouldn't there be more to it?
My first job as the official donor was to have an angiogram to get a blueprint of the blood vessels of each kidney and decide which was best suited for transplantation. The procedure consisted of a needle inserted into my groin which entered my femoral artery. A small tube was threaded through the needle and dye was injected into the blood vessels of each kidney. The angiogram could be watched on a monitor. Watching the action was interesting and kept my mind focused on something other than the strange pressure being exerted on my groin, and the fact that a room full of strangers were carefully watching my groin. A mild sedative also helped.
I had minor problems post-angiogram and got the privilege of having eight nurses and doctors examine and feel my groin in one weekend. Any initial shyness about lifting my hospital gown for strangers quickly vanished as time passed.
My left kidney was chosen for transplantation. This one was preferred because of a longer renal artery and vein and longer ureter as well.
It was now only a matter of time. Surgery was slated for Jan. 6. I had about five weeks to eat as healthy as possible and prepare mentally for the operation. I did the healthy eating thing until Christmas hit, and the chocolate temptation became too great. I managed to avoid the mental preparation until a few days before surgery.
Initially I had no qualms about the whole procedure--I was more concerned about Massis, who would have a longer and more critical recuperation period.
Post-surgery, he would take anti-rejection drugs, which are immuno-suppressants that fool his body into believing the new organ is not there. He would also take a number of other medications to control side-effects such as high blood pressure.
When I started to feel anxious about the procedure, I would preoccupy myself with any activity possible. It wasn't until two days before the surgery that I began to have trouble sleeping as I anticipated the morning of the surgery. I would envision the long white hallway leading to the operating room and begin to panic. My imagination took over and all the horror stories I could conjure about botched surgeries filled my mind. I desperately didn't want to be alone.
Surprisingly, the night before the surgery I slept incredibly well. After five failed attempts to get an iv into my uncooperative veins, the sixth worked and I was exhausted. I slept soundly and was cheerful when I woke up at 7 a.m.
Unlike in my nightmares, my brother and I went to the or and instead of sterile white walls, there were balloons, teddy bears and colourful pictures everywhere. It didn't feel like we were headed for a serious operation.
My last memory before the transplant is of a skinny man with a full brown moustache. My first memory upon waking up is of a skinny man with a full brown moustache telling me not to scratch my face which was itchy beyond belief. A common reaction to morphine, the itchiness was driving me crazy. I felt like I was dreaming as I clawed at my swollen face.
The days that followed are a mixture of surreal images with excerpts of conversations and vivid dreams about tuna sandwiches. Unable to eat for the first couple days, I dreamed about food incessantly. The floating tuna sandwich appeared repeatedly and I think it may have talked to me. I would drift in and out while visitors talked to me, and would ramble on about nonsense.
Everything seemed so vivid and graphic that I was unable to distinguish reality from fantasy. I asked about Christmas presents I didn't receive, followed up on conversations that didn't happen and craved tuna. I also reacted to everything I was given and my stomach kindly returned any medication I would swallow.
Massis, on the other hand, responded very well. Aside from having to surgically reposition the new kidney later that day because of space constraints in his abdomen, he recovered very quickly. In the first day, he produced approximately 17 litres of urine, a good sign.
From there the slow process of recovery began. I was released from the hospital after five days and headed home to take daily four hour naps. I was exhausted. I had decent mobility considering how soon after the operation it was, but my energy level was negligible. The first few days at home, I slept an average of 18 hours a day. The tuna sandwich would not leave me alone, every afternoon it made another appearance.
Massis was anxious to return home after I left the hospital and after a few day trips, he was home for good five days after me. He was on a number of medications, most importantly immunosuppression drugs so his body would remain unaware of the new kidney living inside it. One medication, prednisone, was a steroid with a plethora of side effects, most noticeably as an appetite stimulant. Whereas eating before was something Massis had to be coaxed into, now he couldn't get enough. Commercials made him hungry, pictures of food made him hungry and with the slightest mention of a restaurant, he wanted to go.
This new Massis was interesting to watch. Normally rather quiet, he began to laugh frequently. He would make jokes about his medicines and their effects, and laugh about his unquenchable hunger.
Life slowly returned to normal. Massis initially made daily trips to the hospital for bloodwork and check-ups with doctors, but has since reduced the number of visits to four per week. The main focus now was managing the medicines and determining ideal dosages. Many of the benefits of one medicine would be affected by another, so careful monitoring was required.
Currently, he is experiencing problems with insulin levels because of other medicines, so he gives himself daily injections. He has adjusted quite well to his routine and diet restrictions. He just wishes he could eat more and go the bathroom less.
I returned to school and work 11 days after the operation, amazed at how quickly my body recovered from major surgery. My strength and stamina have steadily increased and my only restriction is no heavy lifting and strenuous activity for another month or so.
I am still baffled by the ease of the recovery after the initial pain. Five days of discomfort to save a life seemed like an easy choice to me.