Dealing with Dialysis

The purpose of dialysis is to cleanse the toxins from your body. To achieve this,it's necessary to have a method of connecting the "cleaner" to the body. This access is known as a port (because it is the entry point to your body's systems). In hemodialysis, the access is usually in one of 3 areas: chest, arm, or groin.

Chest: If you started dialysis unexpectedly or on short notice, you've probably had a port put in your chest. This a temporary measure -- you're not supposed to keep it there for a long time but it can be there for months. The advantage of the chest access is that it's immediate. They insert the plastic tubing (it's capped off between treatments) into the chest, just below the collar bone. Until it's removed, you have a piece of plastic tubing coming out of your chest (it's taped down and protected). The main concern is that the point at which the tube enters the body is vulnerable to infection if not kept very clean and dry. So a special dressing is put on when you finish dialysis each day and it is changed when you go the next time. In between, you must not get it wet, so sponge baths and half-showers, only. No baths. No swimming.

Arm or Groin: I've had the arm access but not the groin, so I'm going to focus on the arm access here. The principles are similar. Longer-term dialysis access is put into the arm (or sometimes the wrist), with the location and method being determined by your vascular surgeon after s/he does a venogram to locate a good vein. There are two approaches:

• Fistula: An arteriovenous fistula is the most natural option and the preferable one if the surgeon is able to identify an appropriate vein. To create an AV fistula, a vein and an artery are surgically connected. After a "curing" period of several weeks, this access is strong enough to accommodate the two needles (one for blood flowing out to the machine, the other for blood returning to the body) needed to perform dialysis. The fistula is completely internal and is a natural part of you, so there are no restrictions on showering, bathing, swimming, etc. Fistulas can last for many years and for some people can be virtually permanent. Surgery for a fistula, is usually an outpatient procedure. There is discomfort for several days, but that's it.
• Graft. With this method, synthetic or bovine tubing is inserted into your arm, under the skin, as with the fistula. General access is similar. Furthermore, a graft can be used very shortly after insertion. No need to wait for curing. However, grafts can be more prone to clogging or other issues that can compromise their effectiveness.
• Shunts and catheters are temporary forms of access for immediate and short-term use.

IMPORTANT TIPS to Preserve Your Fistula
>>> NEVER let anyone (except your dialysis technician) draw blood from your fistula.
>>> NEVER let anyone take your blood pressure on the arm with the fistula or graft.
>>> Avoid putting pressure on the arm with your access and don't sleep on it.
>>> Don't carry heavy objects with that arm (especially boxes that might rest on it).

The first thing you will do when you enter the dialysis center is weigh yourself. This number -- your "wet weight" -- is the weight before treatment. After dialysist, you are weighed again. This second number -- "dry weight" -- will be lower than the first one. It's your weight with the excess fluid removed. The difference between the dry and wet weights is the amount of fluid your body accumulated in the interim between dialysis treatments. This is the amount that your kidneys were not able to get rid of. (Note: In a 3-day-a-week dialysis schedule, two of the treatment days are separated by a day; the third treatment day follows a 2-day hiatus, so the wet weight for that day would likely be higher.)

Chances are, you've been told to monitor and limit your fluids. The stringency of the limitation depends on how much fluid your body is able to eliminate on its own. Evidence that your body is retaining fluids can be seen in swollen hands, ankles, legs, and even face, but the true indicator is the scale..

While dialysis removes the fluid, the more there is to remove the harder it is on the body. The machine can be adjusted to "pull," or circulate, at different levels. The stronger the pull, the more wearing it is and the more tired you will feel. You may think you're just sitting in a chair, but your body is working plenty hard.

PERSONAL ANECDOTE: When I was on dialysis, I had the problem of retaining fluids and my ankles would swell pretty noticeably. I didn't worry about it much because swollen ankles in hot weather run in my family. My doctor would give me "the look" and I'd tell her it wasn't really swelling because all I had to do to get rid of it was elevate my legs for 20 minutes and the swelling would go down.

She always listened patiently and I could barely hear her mental eye-rolling. One day, though, she stopped my excuses. She said, "And when you elevate your feet to get rid of all that swelling, it doesn't just evaporate. Do you know where the swelling goes?" She paused. "It goes to your rear end."

After that, I was more careful with my fluid intake.

I'm not a dietician. I'm definitely not a cook. But I can give you some basics. The thing about a dialysis diet is that you need to compensate for the work your kidneys aren't doing. In some instances, this may mean increasing your protein. In most instances it will mean decreasing potassium and phosphorus.

Both potassium and phosphorus are necessary nutrients that are present in a great many foods. When the kidneys are working effectively, they filter any unneeded quantities of these nutrients, however, this is one area in which dialysis cannot match kidney function. This means that you need to be careful to limit the amount you take in to begin with, in order to avoid excessive build-up between treatments. So a very basic rule of thumb is to avoid foods that are high in potassium or phosphorus.

So, which foods are they? Well, the bad news is that a lot of foods have significant amounts of one or the other of these nutrients.

Potassium
Potassium is found in fruits and vegetables. Some contain so much potassium that they really do have to be avoided (note: I don't say eliminated; nothing is unconditionally forbidden).. Some specifics come to mind: bananas, oranges, nectarines (but peaches are ok), potatoes (all kinds), spinach, broccoli, tomatoes, brussels sprouts,. This isn't an exhaustive list, of course. Better for you are plums, pineapple, cherries, most berries, apples (but NOT pears), grapes, green beans, carrots, cucumber, lettuce, eggplant. Bad news. Chocolate is high in potassium. And dried peas and beans are high not only in potassium, but in phosphorus, as well.

TIP: You can eat potatoes if you cook them a special way (i.e., cook away all the nutrients): cut into small pieces, boil in a large pot of water, pour out water and refill, boil some more.

Odd and Annoying Fact: This runs completely counter to anything you were taught about nutrition, but on a kidney diet, canned fruits are better for you (lower in potassium) than fresh fruits.

Phosphorus
Foods that are associated with phosphorus are mostly proteins: meat (including chicken and fish), dairy products, and legumes (nuts and beans). Of course, this covers a lot of territory, so controlling phosphorus intake can be challenging. In the resource section, you'll find more detailed guidance than I offer here. Your doctor may prescribe phosphorus binders -- tablets that you take with your meals to help keep the phosphorus out of the blood stream. In conjunction with a low phosphorus diet, this can keep things on track.

Double Jeopardy
Certain foods are designated "double jeopardy" -- high in phosphorus and potassium. Unfortunately, some very popular foods fall into this category, but its important to learn what these foods are because they really should be avoided. (This doesn't mean they're totally forbidden. No food is totally forbidden. It does mean to eat them rarely and sparingly.)

PERSONAL ANECDOTE: I encountered lots of people at dialysis -- with different life circumstances, varying levels of health, and miscellaneous conditions. At first, everything was strange and unexpected, but after awhile, it all got to be routine. So the day I heard the clink of something hitting the floor and rolling, I didn't need to look up from my book to know that Miz G's glass eye had popped out once again.

There was some scurrying, and some crawling, followed by a few muffled exclamations. Eventually, though, the activity halted.

They couldn't find it.

They never did. But for days after that, I compulsively checked the floor before venturing into the treatment room, expecting to see that eye peering at me from a shadowed corner.

A big question/concern for people starting dialysis is mobility. Because life now revolves around a pretty much unbreakable schedule, a certain amount of flexibility does go away. Can you travel? Yes, absolutely. It just requires a bit more coordination and forethought and some restrictions are inevitable.

These days, though, many types of tours offer accommodation to people who need dialysis. Many cruises offer dialysis on board ship so that travelers can adhere to their routine and still participate in the wide range of activities offered.

Travel outside of a specialized tour requires more upfront preparation but it's very manageable. The key is to allow sufficient time to make the arrangements. I attended a number of out-of-town family gatherings while I was on dialysis. I found that longer lead times helped: 4 to 6 weeks was optimal. The basic procedure was to identify a dialysis facility in the city I was heading to. Then my dialysis center contacted the out-of-town facility to make arrangements for me to be a "transient" patient. Faxing of treatment and medical information was handled by the centers -- I just needed to stay on top of to ensure that something didn't get overlooked.

The one thing I missed, though, was the freedom to pick up and go somewhere for a long weekend on the spur of the moment. You can't just get up one morning, pack a bag, and head out. You have to plan. I didn't much like that, but some things you just accept. If you have a vacation place, though -- some place you go on summer weekend, for example -- you should be able to set up a regular transient appointment at a nearby center and make that part of your routine.

Are there any benefits to dialysis (other than the obvious one of continued life)? Actually, yes, I did discover a few small conveniences.

Doctor appointments. for example. When you're on dialysis, your vital signs are checked (multiple times) 3 days a week. Short of having your own personal medical team, this is is the most consistent health monitoring you're likely to have. The dialysis doctor (usually your own nephrologist) makes regular rounds at the center, so fairly frequently you'll be examined by him/her and have an opportunity to review your numbers and discuss treatment modifications -- all without leaving your chair.

When it's time for your annual flu shot you won't need to schedule it, go anywhere, or even remember it. It will be administered automatically at the appropriate time. The same holds true for pneumonia vaccines.

Drawing blood. Before dialysis starts, blood testing is usually frequent and you have to go to a lab. This is inconvenient, at best. If you have bad veins, it can also be painful. Once you start dialysis, blood draws are a simple matter of pulling some at the end of dialysis.

Protein Injections. Pre-dialysis, some people become anemic and need to boost their red blood cells by giving themselves injections. If that becomes necessary when you're on dialysis, it will be administered directly into your dialysis access during treatment. No separate injections or needle sticks.

Peeing: This might come under the heading of TMI, but it's a concern many people have. One of the things that often happens when you're on dialysis is that your need (and ability) to urinate decreases and may disappear entirely. When this first happened, I was pretty freaked out about it because it underscored, again, that things had changed. That I was "sick." I strive for individuality, but in this instance I would have preferred to be one of the masses. After a time, I came to terms to this new reality and after awhile I discovered its benefits. On countless occasions, I would be with my family on some jaunt or other and we'd have to make pit stops. I got a little smug knowing that I was never the catalyst for these stops. While they stood in bathroom lines and dealt with less-than-savory facilities, I could relax, enjoy the breeze, read.

One of the things I discovered when I was on dialysis was that my stamina was somewhat decreased and there were days I didn't feel up to long shopping excursions. Because of this, I started shopping online more; a lot of my shopping ended up being through Amazon.

Amazon has a program, Amazon Prime, that turned out to be very useful for me. Perhaps it will be for you. Up front, you pay $79 to join Amazon Prime. Thereafter, on any Prime-eligible product (many, many things) you get free two-day shipping. I did a whole lens about this, if you'd like to read it. The gist is that no matter how much you order during the year you won't pay shipping and it ships very fast -- even if its just a $5 item. I just ordered a case of bouillon and one of pretzels for my father, shipped free. He'll have them in 2 days and he won't have to shlep to the store. I may not be in the same state, but I can still shop for him.

>>>Try Amazon Prime

By the way: Anything I'm recommending on this page is eligible for Amazon Prime, so if you join the program or do the free trial you'll save the shipping cost.

Davita Kidney Disease Diet & Nutrition Basics
Hemodialysis Shunt, Fistula, and Graft Care