Life on Dialysis: How it works, How I cope

In March of 2000 I was diagnosed with a rare auto-immune disorder called GoodPasture's Syndrome and renal failure, which was secondary to the disease.

"Goodpasture Syndrome is a rare disease that can affect the lungs and kidneys. Also called anti-glomerular basement antibody disease, it is an autoimmune disease-a condition in which the body's own defense system reacts against some part of the body itself. When the immune system is working normally, it creates antibodies to fight off germs. In Goodpasture's syndrome, the immune system makes antibodies that attack the lungs and kidneys. Why this happens is not fully understood. Researchers have identified a number of possible causes, among them the presence of an inherited component; exposure to certain chemicals, including hydrocarbon solvents and the weed killer Paraquat; and viral infections."

I spent a great deal of time recuperating in the hospital, having to let a machine breath for me until my lungs healed and having all manner of tubes and gewgaws protruding through my body in order to keep me alive.

When I was in the emergency room, I remember the doctor telling me that my kidneys were completely destroyed and had I not come to the ER when I did, I would've passed away in less than eight hours. I was 21 years old at the time.

I slowly began to improve over the course of six weeks, and it wasn't long before I was giving my nurses a hard time and cracking jokes. I started dialysis via a catheter that was placed in my chest, this catheter was also used for plasmapheresis... a process where your plasma is removed and and replaced in order to remove the harmful antibodies in your system. Dialysis was a weird experience at first, it leaves you feeling drained and sometimes cramp due to fluid removal from your system.

From the start, I had a very positive outlook on my kidney failure. I refused to let this situation depress me. My nurses where all very amazed at my chipper attitude towards it, and I think I enjoyed that. My reasoning was "Why would I let something like this stop me? There is hope!"

Dialysis is a peculiar process where they clean the toxins from your blood and remove excess fluid you may have accumulated in between treatments. There are two types of dialysis, at the moment, one being peritoneal dialysis, where they place a port in your abdomen and you hook up a bag of dialysate, cleansing liquid. The walls of the abdominal cavity are lined with a membrane called the peritoneum, which allows waste products and extra fluid to pass from the blood into the dialysis solution. The solution contains a sugar called dextrose that will pull wastes and extra fluid into the abdominal cavity. These wastes and fluid then leave the body when the dialysis solution is drained. The used solution, containing wastes and extra fluid, is then thrown away. The process of draining and filling is called an exchange and takes about 30 to 40 minutes. The period the dialysis solution is in the abdomen is called the dwell time. A typical schedule calls for four exchanges a day, each with a dwell time of 4 to 6 hours. Different types of PD have different schedules of daily exchanges. This form of dialysis can be done at home and you have less fluid and dietary restrictions. It is also much easier to travel.

Hemodialysis is where they hook you up to a machine via catheter (if you're a new patient) and either a graft or fistula. The catheter they place in your chest wall, which leads down into your vena cava. Catheters are only meant for new patients until they go to surgery for a graft or fistula which is either placed in the arms or leg. The catheter is meant as a temporary solution because it can cause many problems either with infection of the blood stream or it can cause clotting.

A graft (which is a piece of tubing the connect to your circulatory system) or a fistula (which is where they connect a vein to an artery to create a large volume of blood flow adequate for dialysis and needle sticks) is the best option for hemo patient because you get the best treatment possible. A graft will not usually last as long as a fistula, so it is in your best interest to talk to your surgeon about going with the fistula surgery.

A morning for me at dialysis goes like this: I walk into the facility and set up my bed (some units have recliners instead of beds) and I walk over to the scale to weigh myself. This is done to determine how much fluid I've gained since my last treatment. We determine how much to remove during the course of treatment. I usually remove anywhere from 4 kilos to 6.5 (which in lbs is equivalent to 8.8 - 14.3 lbs). This is a higher amount than recommended, as it can put excess strain on your heart which will eventually lead it to getting abnormally large and cause Congestive Heart Failure.) After the weigh in, the nurse takes my blood pressure and temperature and then I go and get comfortable in my bed.

A dialysis technician will come over and place the blood pressure cuff on my arm. They monitor blood pressure all throughout the treatment to make sure it stays in a safe range because the fluid removal can cause your pressure to drop to dangerous levels if you challenge your weight too much. Then they clean my fistula site with alcohol pads and look for a good area to make a stick. There are a few different sizes of needles they use for dialysis. I happen to be on the 15 gauge (which if you have any experience with body piercing, you'll realize how HUGE these needles are). They stick one needle in the lower part of the fistula in my arm and then place another one just above the other. The lower needle is for the venous return, which means freshly cleaned blood is returned to my body and the other is arterial which is where toxin-loaded blood is sent through to the machine for filtering. These needles are attached to tubing which is hooked up to a machine strung with various tubes that all lead to an artificial kidney.

This artificial kidney is also known as the dialyzer.

"It is the piece of equipment that actually filters the blood. Almost all dialyzers in use today are of the hollow-fiber variety. A cylindrical bundle of hollow fibers, whose walls are composed of semi-permeable membrane, is anchored at each end into potting compound (a sort of glue). This assembly is then put into a clear plastic cylindrical shell with four openings. One opening or blood port at each end of the cylinder communicates with each end of the bundle of hollow fibers. This forms the "blood compartment" of the dialyzer. Two other ports are cut into the side of the cylinder. These communicate with the space around the hollow fibers, the "dialysate compartment." Blood is pumped via the blood ports through this bundle of very thin capillary-like tubes, and the dialysate is pumped through the space surrounding the fibers. Pressure gradients are applied when necessary to move fluid from the blood to the dialysate compartment."

My blood will cycle for four and half hours while I lay there. I can read books, watch television, play video games (I bring my PSP to keep me occupied), or I can mess around on my laptop. Four and half hours is the higher end of dialysis run times, a lot of people run anywhere from two and a half to five hours. It all depends on what the doctors decide is best for you.

They take labs to monitor your toxin and clearance levels bi-monthly, depending on how they look determines how much time you have to do on the machine.

There is also a special diet a renal patient must follow to stay as healthy as possible. Minerals that must be avoided are phosphorus and potassium. That means you are very limited in what you are able to eat as far as vegetables and fruits go. No banana's, no oranges, no potatoes (yes that means french fries too), very little milk or dairy products (That means cheese too). No chocolate. No nuts. It leaves you to think well what the hell can I eat?!?! You actually find that you have to refer to a chart from your dietitian before you eat ANYTHING. Potassium is especially dangerous because when it builds in your system it can cause cardiac arrest. Phosphorus is a little more subtle and sneaky. When it builds in your system it can leech calcium from your bones, leaving you at risk for early osteoporosis. It can also leave calcium deposits in your soft tissue and organs, which is sort of like turning into a rock, over time. As I mentioned before, fluid gains also have to be watched. A responsible patient will measure out their fluid to assure they don't over do it and put strain on their heart. Other people... well, aren't so responsible and they end up paying the price for that later. After a while, I got the hang of what I could eat and not eat. I even cheat the diet occasionally when my lab reports tell me I can get away with a little something. Some times I'll have a bit of chocolate, or I'll share an orange with my boyfriend. Oh how I miss oranges and bananas. It's ok to have a no-no food every now and then as long as it isn't a habit.

It's definitely a life-style adjustment to the extreme, and a lot of people get depressed or lose hope. You should never lose hope. There is always a light at the end of the tunnel. It's not as bad as it seems. I find that keeping up a positive attitude really helps me get through the rough times. Thank the heavens for the doctors who pioneered this life-saving process. I shudder to think that if this had happened to me 30 years ago, I would've probably died because it just wasn't widely available. I consider myself to be extremely lucky and I will just keeping holding on to hope that I will one day receive a kidney transplant and my life can return to something more normal. I hope this was informative for people who just don't realize what renal failure means and how we cope with it.