Monday, August 6, 2007

A Special Anniversary

No August 6 isn't our wedding anniversary. That's next month. August 6 is the anniversary when Daughter#1 received her new kidney. In 1989 surgeons at Children's Hospital here in Washington transplanted a kidney into her from a donor from Tennessee. We know virtually nothing about the donor other than she was a three year old and was from Tennessee. Everything else was kept private. While providing a nearly normal life for my daughter, the downside to most transplants is that some family has to endure the loss of a loved one. Usually some one much too young to have past away. While they endure their loss, we get to celebrate a life reborn.

We never realized that Daughter#1 has any kind of problem until a routine physical at age five disclosed that she had excess protein in her urine. Sure, she seem tired more than the twins and yes she looked pale, but then being mostly of Scottish ancestry, heck, we all looked pale. Follow up tests were ordered. Her pediatricians tried to alley our fears saying it was probably nothing as they arranged appointments with Doctors down at Children's. There after many tests and scans, they confirmed that Daughter#1 was in the early stages of renal failure. One kidney had apparently never formed properly and was more like a shriveled walnut and not functioning at all. The other, while barely functioning, showed extensive scaring the origins of which were unknown. Her one functioning kidney was barely keeping her at acceptable levels and she needed to be monitored monthly. As her kidneys were not functioning as they should, it also affected her growth and production of red blood cells. Jobs, Ann and I had no idea, the kidneys controlled. At her Nephrologists suggestion, we also enrolled her in a study being conducted by Virginia Commonwealth University. We viewed the study as not only being of some eventual value to other kidney patients down the road, but also a way to see her Doctors on a more regular basis. While that was true, it also involved getting blood drawn every month. To say Daughter#1 hated giving blood is quite the understatement. It took two nurses plus myself to hold her, while the Doctor drew blood. More then once she got so agitated from the experience and the crying that she threw up all over me. Funny thing is, you get use to it after a while and its not nearly as gross as it was the first few times. From ages 5 to 7, her kidney slowly deteriorated. She would get listless at times and getting her to concentrate was a problem. Working math with her would literally take hours to complete. A couple hours of whining and crying and dropping her head on the kitchen table with exhaustion were the norm to complete about 15 minutes of homework. By age 7 she needed to go on dialysis and she was also put on the registry for transplant patients. Then as now, there is an acute shortage of organs available for transplant and the wait can be long. At least dialysis was an alternative and her life wasn't at risk.

Ann and I both volunteered to donate on Daughter's#1 behalf. We decided that I would be the one to donate. Given the thinking of the day, the Doctors began a series of transfusions from me to her. Not really blood transfusions, but more a combination of white cells and plasma. Unfortunately the procedure backfired. Instead of making her body more receptive to receiving my kidney, it had in fact, triggered antibodies in Daughter#1's system making transplant of my kidney impossible. Unfortunately after testing on Ann, the same was true for her. It was a huge disappointment for us all. We were now in the position of having to wait for a donor kidney.

While we waited, Daughter#1 started dialysis. As a little dialysis primer: There are two types of dialysis available - hemodialysis and peritoneal. Hemodialysis is probably the better known of the two. For hemo, they hook the patient up to the machine and the blood is circulated through the machine, cleansed and returned. It requires treatment 3 times a week for about 3 hours per visit. In peritoneal dialysis, the blood is cleaned inside your body. The doctor does surgery to place a plastic tube called a catheter into your abdomen (belly) to make an access. During the treatment, your abdominal area (called the peritoneal cavity) is slowly filled with dialysate through the catheter. The blood stays in the arteries and veins that line your peritoneal cavity. Extra fluid and waste products are drawn out of your blood and into the dialysate. There are two major kinds of peritoneal dialysis - continuous and cycling. Continuous Ambulatory Peritoneal Dialysis (CAPD) is the only type of peritoneal dialysis that is done without machines. You do this yourself, usually four or five times a day at home and/or at work. You put a bag of dialysate (about two quarts) into your peritoneal cavity through the catheter. The dialysate stays there for about four or five hours before it is drained back into the bag and thrown away. This is called an exchange. You use a new bag of dialysate each time you do an exchange. While the dialysate is in your peritoneal cavity, you can go about your usual activities at work, at school or at home. Continuous Cycling Peritoneal Dialysis (CCPD) usually is done at home using a special machine called a cycler. This is similar to CAPD except that a number of cycles (exchanges) occur. Each cycle usually lasts 1-1/2 hours and exchanges are done throughout the night while you sleep. The above descriptions come courtesy of the National Kidney Foundation. Given Daughter#1's age we chose option 2 of the peritoneal dialysis. A machine was delivered and enough medical supplies to set up our own Urgent Care Clinic. Every night we would hook her up to the cycler. In order to do this we would first have to clean and rebandage the site at which the catheter entered her body. This involved scrubbing in much like a surgeon does, masking and putting on sterile gloves. It quickly became routine and we got rather good at it. We did do the continuous peritoneal from time to time like when we went on vacation. When we traveled to Disney World, our first stop would be the First Aid Station where we would talk to the Nurses on duty. drop off the supplies we needed and every three of four hours drop by for a transfer. We even did a Show and Tell about it at Daughter's#1 school. Along with the dialysis, Daughter#1 also needed blood transfusion every three months to prevent becoming anemic. We had several friends that stepped forward to donate blood for her, which we truly appreciated.

As we learned, organs for transplant, like babies about to be born, all come in the middle of the night. Children's gave us a beeper so that they could contact us in the event a kidney became available. This was before cell phones were widely available. For each available kidney, a prime and back-up were called in. We were called in two times in the middle of the night as the back-up. Finally the third time was the charm. The call came about 3:00 in the morning and we were at the hospital by 5:00. Around 7:00, they gave Daughter#1 something to relax her and she became quite the chatty Cathy. This from a kid that the Doctors had to literally bribe in order to get her to talk (Note that is so not a problem now). The staff was greatly amused. Around 7:30 she was wheeled away for her operation. Everything went well and she was released after a week. There was a period of adjustment. Her face swelled in reaction to the steroids she had to take. The so called Moon face we had been told to expect. Over time, the swelling went away as the steroids were scaled back and eventually eliminated. She is, of course, required to take immune suppression drugs for the remainder of her life. A small price to pay. She's now had her new kidney for 18 years. She's in unexplored waters now as most kidney transplants fail after after 12 to 15 years. Knock on wood in that she hasn't even had a rejection episode. The only down side, if you can call it one, is that given her age when she received her new kidney, her growth plates in her bones had mostly started to close and she was never able to grow to her full potential. Not that we're a tall family, but her sister is 5'5" and Daughter #1 is only 4'10". The upside of being 4'10" is you make a great coxswain. So here is to another 18 years for her kidney (or more!) and a special thanks to the family in Tennessee who made the tough decision 18 years ago to donate their daughter's organs.

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