By now I should be listed on the UNOS transplant list. This whole thing is a little surreal. Ever since I found out about my funky kidneys and my kidney disease, I knew I'd need a transplant someday. I just didn't know that "someday" would be now. Someday always denotes some far-off future date. It's funny how easily you can convince yourself that "someday" may never come--or maybe I was just hoping it would never come. Now that the process has begun, I can say that I'm actually looking forward to the transplant. Not the actual procedure and the immediate aftermath, but down the road from it a bit. In my minds eye there is a hill. I can see light near the top of what I imagine is a beautiful sunrise. All I have to do is make it over the horizon.

So I went to my "activation" class yesterday. I had 8 vials of blood drawn, which was fun. They will do tissue typing and other blood work. Tissue typing will show how many antigens are in common with the potential donor kidney. The most important thing is my PRA (panel reactive antibody) test, which shows how many anti-human antibodies I have in the my body. You'd have a high PRA if you had a blood transfusion, a baby, a severe infection, or a transplant. My PRA should be very low (near 0% would be best) as I have had none of those.

Randy will begin his testing soon. The first and most important test is essentially the tissue typing. They'll combine our blood and see how reactive it is. This is called a crossmatch. We want to have a negative crossmatch.

After they work up my many vials of blood, they will place me on the UNOS transplant list. Now we just have to wait and see. If Randy gets all of his tests done soon, we could be looking at surgery sometime early next year. If he is not a match and I need a kidney from the list, I could be waiting for five years or so. Either way, I'm excited to get the ball rolling.

Today I had a really fun time getting my blood drawn. I go to LabCorp at least every other month to get blood drawn for analysis of my kidney function. They are both staffed by monkeys, and the slowest snails on Earth. More than once they've "lost" a vial of blood, making me go back to get more drawn. Once they decided to do a liver panel instead of a kidney panel. Don't ask me why. At least I found out my liver is super healthy.

My nephrologist has started using a service that only does tests for patients with kidney disease. They sent me this box and lab order. The box contains the vials and everything the lab needs to draw my blood and ship to the testing facility.

So I arrive at the lab, box in hand and sign in. The woman checking people in moves like she has weights tied to each limb, her eyes droopy and uncomprehending. The waiting room is already full even though it's only 8am. So I sit and wait with my little box. And wait. And wait. For almost an hour. Finally my name is called and I bring up my little box. The lab techs regard the box as some foreign object never seen by common earthlings. The lady takes my order, looks at it quizzically (I'm not sure she was capable of reading) and sends me in to the blood draw room. The box has a tab across the front they must pull off to access the contents. The dude is perplexed by the box and keeps turning it around and around trying to find a way in. I point out the tab and he gives a little grunt. He takes the tab in hand and gives it a mighty yank, which only succeeds in tearing off the tabs handle. He then takes his pen and starts to dig out the tab from the box. This takes a few minutes and eventually he both gets the tab off and breaks his pen. He assures me he has plenty as he tosses the pen in the garbage. He then takes everything out of the box one by one regarding each with interest and saying the name of the object out loud ("a coupla rubber bands. Ok. An ice pack. Ok. Blood vial. Ok. Return label for shipment. Ok.") before laying each item carefully out on the counter. After emptying the box, he gets set up to draw my blood. There is always a little prick when the needle is inserted, but today, for some reason, it hurts like hell! When he's finished he says with a satisfied grin, "There. Should only be a little bruise. Not bad!" Which, it turns out, is correct, but a) is a scary thought for other patients ("Oh. That'll be a big bruise. Sorry.") and b) I've never actually bruised from a blood draw before. I then put on my jacket and hurry through the crowded waiting room. I hope to god they package and ship the collection correctly.

Stem cell research is an area that could lead to incredible advances in the treatment of kidney disease. The idea that stem cells could be used to reverse the disease, or to grow me a whole new kidney--my own kidney, where the need for immunosuppressant drugs is no longer needed--is very appealing to me. Besides my own selfish needs, there are many benefits to stem cells for other diseases and could even help people who need other organ transplants, but must wait for a cadaver organ. I don't personally have a moral problem with stem cell research and I understand the ethical dilemmas of embryonic stem cells, but the potential benefits of this research to all mankind is too great to ignore.

Another area of interesting research is chimerism, the idea that injecting bone marrow and/or blood from the donor into the transplant recipient could result in the recipient becoming drug-free. The reason for immunosuppressants is because the body will treat the transplanted organ as a foreign object and will want to get rid of it. The drugs help keep the white blood cells from attacking the organ. There hasn't been a lot of research into chimerism, but they have done the procedure on several patients, most with positive results.

A kidney transplant from a live donor lasts around 20 years. That means I will most likely need another transplant down the road. I hope research is able to continue on alternative treatment options so maybe one day I can live a healthy, drug-free life.

I've been approved for a kidney transplant! I go to the "activation" class next Wednesday, November 19 to do tissue typing and to get the ball rolling. My brother Randy has graciously offered to get tested to be a donor and he'll go first. Other family members and friends have expressed an interest in getting tested, of which I am so grateful and appreciative for the support. Hopefully I'll only need to have one person tested, and my best chance of getting a perfect match kidney is from either my brother or my sister. If it turns out Randy'll be my donor, I will be forever indebted to him. I'm nervous and apprehensive about the transplant, but it is necessary.

I learned I had kidney disease in the spring of 2002. A routine physical turned up higher than normal levels of protein in my urine and creatinine in my blood. Creatinine is waste product that the kidneys mostly filter out. The creatinine level is how they are able to tell how well or how poorly your kidneys are functioning. This was the first time I had been to the doctor in around 6 years, the first time I had been to this particular doctor, and the first time any doctor had spotted anything unusual in my labs. I was sent to see a Nephrologist, Dr Kristensen. She explained that my kidneys were functioning at around 35% of normal and that she needed to do a biopsy to find out what was causing the kidney failure.

I had no idea what any of this meant. My kidneys were failing? How could this happen? I took pretty good care of myself. True, I needed to exercise more and eat a healthier diet, who doesn't? Well, I suppose smoking cigarettes and pot wasn't exactly healthy, but that was pretty much the extent of my unhealthy behavior. I knew plenty of people that smoked more cigarettes, or ate way less healthy, or just generally lived a less healthy lifestyle than I did. What did I do to my body that was causing it to fail?

The biopsy was scheduled on a warm morning. I showed up to the hospital and checked myself in. They explained that they needed to do an ultrasound of my kidneys so they would have an exact location for the biopsy. After waiting an ungodly amount of time, counting the holes in the ceiling tiles, I was finally brought into a small room. I laid down on my stomach and felt the cool gel against my skin as they began the ultrasound on my right side.

"Huh," said the tech, "there doesn't seem to be much over here."
"Really?" asked the nurse.
"Yeah, look, there's no kidney here."

Dr K was fetched and they took a peak at my left side. What appeared to be two kidneys were bunched together where there should only be one. I was sent to have a cat scan, which gave a clearer picture of my physiology. The diagnosis: chronic renal insufficiency, congenital urologic abnormality. Turns out, I have what's called crossed fused ectopia: my kidneys had fused together on the left side while I was developing in the womb. As I was growing up I had urine reflux: the bladder was kicking urine back up the ureter into the kidneys causing damage to the renal tissue. Usually, each kidney has a ureter, the tube that carries the urine to the bladder, but I only had one.

My kidney function had been slowly declining my entire life. It seemed so surreal, but now I had an answer. I didn't do anything to my body, it's just how I was built. Kelly and I like to say that I have conjoined kidneys.

Over the next few years my kidney function declined very slowly. There was talk of transplantation, but that was something we'd discuss in the distant future. Things were starting to become status quo. Every couple of months I'd go get blood drawn and pee in a cup. A week later I'd visit Dr K and she'd tell me the same thing: kidney function around 30%, watch potassium intake (kidney disease makes it hard to regulate), limit animal protein, don't take Advil.

Last summer it all changed. Suddenly the kidney function declined quicker than usual. I noticed I was tired all the time and physical activity seemed to wear me out faster. I used to be pretty quick witted, but now my head seemed a little fuzzy (I actually noticed this years earlier, but brushed it off. Dr K explained that the waste product in the blood stream eventually effects the brain. Suddenly it all made since). Dr K decided it was time to start the kidney transplant process.

So, now I need a kidney. It seems strange to already be at this point in my life. But here we are. In my next post, I'll discuss the transplant procedure and what's next.