One of my favorite lines from Lonesome Dove is “It’s not dying I’m talking about, It’s living”. So much can be said by just saying those words. It’s living we talk about every day!
Living on dialysis is living with a disability. You can let the disability define who you are and fall prey or you can define yourself and become the survivor!
My husband is a survivor and every day he strives to not only live, but live to the fullest capacity. When you are battling kidney disease, living is one thing but living and feeling good is a whole new ball game.
The layers of kidney disease are many and managing each layer presents a new set of challenges. Kidney failure on its own is one complex layer and kidney dialysis is a whole new layer, each with their own respective side effects. These are the layers (in brief) and how we manage them together.
My husband suffers from End Stage Renal Disease. With ESRD, kidneys are functioning at 10% or lower and when diagnosed with ESRD you are in the final stages of chronic kidney disease. With CKD, the kidneys lose function over time. My husband was not diagnosed with CKD until his kidneys were in the end stage of functioning. He was 20 years old.
Today, he is 35 and managing his disease successfully. In order to do this, it is imperative to understand the complications associated with kidney failure. Equally important is understanding the function of the kidneys and what they are not going to be doing for you anymore.
So, what exactly do your kidneys do for you? Simply put, the kidneys are responsible for removing waste products from the blood and regulating the water fluid levels. In other words, your kidneys filter out all the bad stuff and put it in your urine to rid your body of the waste. WebMD calls the kidneys sophisticated trash collectors and that is pretty accurate. They work HARD! When they don’t work, though, the wastes build up in your blood and damage your body. Fluid is not properly expelled causing serious fluid build-up. The list of complications is huge and boring! Managing the disease requires some form of treatment and since dialysis is the treatment my husband chose, I will talk more about managing your health on dialysis.
Dialysis is what keeps my husband alive. Without it, he has told me, he would live only a couple of weeks, if he had his medication and micro-managed his fluid intake and amount he ate. You see, without kidney function, anything he puts in his body is essentially killing him.
With each piece of food, from a whole meal to a small snack, he has to take phosphorus binders, 3 with snacks, 6 with meals. If he does not take the binders the phosphorus is not removed from his food and poisons him. Phosphorus levels are crucial to maintain and are one of the few things my husband actually struggles with. Levels are tested each time they do lab work and often the phosphorus is the only level that is of any concern.
Kidney dialysis does the rest of the work to remove the toxins and the excess fluid build-up. So, on to the next crucial element of management: fluid build-up. What is it exactly and how does it effect your body?
Three days a week (Tuesday, Thursday and Saturday in our case) dialysis acts like a four hour weight loss plan, short lived, but wonderful for a day! See, if the kidneys are not filtering the fluid out, it is building up. Building up on the heart along with everywhere else. The fluid has no way out of the body and it puts fluid weight on.
A dialysis patient has what is called a dry weight or the normal weight of a patient, without any build-up. For example, the hubby has a dry weight of 67 kilos or 147 pounds. He is pretty happy when he can go in with only 4 kilos (8 pounds 13 ounces) on. But imagine losing eight pounds every other day? And then gaining it back? There are times when he is 10 pounds over and those are especially hard days!
So, how does he manage his weight?
Well, first, he limits the amount he drinks. The recommended fluid intake is 32 ounces a day for a dialysis patient. It is important to remember the water weight of some of the foods we eat. Some fruits and vegetables contain a lot of water. Cucumbers are 95% water! Soup has a lot of fluid and even though we love soup here, we don’t eat it very often because of that. Sodium contributes to fluid retention so we limit our sodium intake heavily! A dietician helps you understand the best and worst foods to eat when you are trying to manage your build-up and if you follow the recommended guidelines, living with kidney disease is that much easier.
Second, he sweats. It seems minor to you or me but to get a good sweat on is wonderful for him! We often joke that we should build a sauna so we can go in there and sweat off that fluid weight! The hubby works hard and during the hot summer months he easily sweats off most of the excess weight. The cooler temperatures of the winter months are not as helpful and he knows he has to really watch how much he drinks when he is not sweating as profusely.
Since October of 2008, he has managed his disease with dialysis and now feels confident in that method of treatment. After so long, you start to figure out the best way to feel good between treatments. You change your lifestyle, your diet, your exercise pattern. You change so you will feel better! You change so you will live!
Oh! There is so much more! Be sure and follow my blog so you won’t miss anything about our journey with kidney disease and what we have going on down here at the ranch!