Hi,
Janta -- CKD is short for "Chronic Kidney Disease."
Kristin -- Kidney disease seems to be one of the few areas of medicine where one of the main things they use to determine a course of action is how you actually feel. My creatinine was close to 8 before I felt sick enough (OK, I left it a little long -- green in the face was not exactly in that year.) to go on dialysis.
Some people on this site got a transplant before going on dialysis. Others were on dialysis briefly. I was on hemodialysis for three months before going on peritoneal dialysis which I did at home, mostly while I slept. I was on dialysis a total of four years before receiving a kidney/pancreas from a deceased non-related donor. I went on the transplant list almost immediately after starting dialysis -- a couple months time.
Don't just sit around and wait for things to get worse. Go ahead with your regular daily life and regular kidney checkups. Ask if there are dietary considerations you should be aware of and make any changes that are recommended, but don't let this consume a reasonably normal life.
Transplant is really great. You still have a routine -- you keep track of weight and temp and blood pressure and, in my case, blood sugar, and you'll have to take meds on a very regular schedule, but you won't be "tethered" by dialysis.
Dialysis is very liveable if you are willing to be creative and not get put out by the unchageable realities of it. And dialysis buys you healthier time for living or waiting for a transplant.
There are several types of dialysis. There is Hemodialysis, which requires you to sit in a recliner for up to 4 hours a time, three times a week. It is the least healthy of options because toxins are allowed to build up in your blood stream for longer periods of time before your blood is "washed." I actually thought it was kind of cool to watch "dirty" blood flow out of me through a plastic tube, then have "cleaned" blood flow back in. It was physically very tiring for me, although the 84 year old guy always seemed to be able to just hop off and drive himeself home through North Dakota blizzards.
Hemodialysis comes with a very tight diet. Six or fewer cups of fluid -- including things like gelatin or ice cream. The only way to accomplish the fluid restriction is to eliminate as much sodium (salt) from your diet as possible. Nothing that is high in potassium or phosphorus, which includes dairy, potatoes, tomatos, so no Big Macs. Basically no fast food, because of the sodium content. If you don't follow the diet, you will suffer. You will retain massive amounts of fluid and pulling that fluid off you with the hemodialysis will cause cramping, or extension of the dialysis time, or both. And potassium balance is key to heart function. You want to maintain good heart function.
There is also peritoneal dialysis. You have a catheter installed in your stomach area which is used to fill the space that surrounds your organs (the peritoneum) with, basically, sterile sugar water. That fluid absorbs toxins then is, after a period of time, drained from your body and more fluid is put in to absorb toxins. I found that I was a slow drain, so it seemed like I was spending all my time transferring fluid in and out of my body, but the four manual transfers a day routine is actually healthiest for you because toxins don't sit for very long.
The type of peritoneal dialysis that I preferred used the same catheter, but I was attached to a pump that helped make the exchanges. Usual prescription is for a total time of 10 hours every night. The machine will screech at you if you kink the hose or roll over wrong in your sleep, but it only takes a couple weeks to deveop the skill of fixing whatever the problem is in your sleep.
Having a tube about the diameter of a pencil, and a little longer stick out of your stomach to one side of your belly button and a little lower might sound unsexy, but I found that I could hide it in a bikini after the wound had healed and I could remove that super attractive white gauze bandage. Once I got over my nervousness, and healed up, my man and I had no problems with night time activities.
The dietary restrictions are mostly about blood pressure control with peritoneal dialysis. I was very lucky, and found I didn't have to restrict my diet very much. I just kind of took it easy with the potato tomato stuff. If I wanted tomato, I didn't have avocado, for example, and I did not seem to need to restrict fluids when I was on peritoneal.
I tent camped (at a site with electricity) ten days every year for the four years I was using the pump (called a cycler.) And figured out how warm bags of fluid so I could make manual exchanges while I was driving down the road. (OK, not exactly approved sterile practice, but it wasn't a regular thing for me, either -- severe time pressure thing only.} You learn interesting things, like you can give yourself hypothermia if you don't warm the fluid before you put it in, and that dogs think it is really good of you to be willing to spend more time on a "leash" than they do.
Kristin, if you want to know anything more about little details of these various treatments, please feel free to contact me at ironmaid3@msn.com. You probably have more than enough here, and realize, please, that it is really amazing how individual each experience is for each person.
Good luck, and it really is normal not to do anything until you feel sick.
Annette
