Wednesday 9 May 2012

What kidney disease really MEANS for me

First, a brief lesson in anatomy and physiology. Like, a super simplified lesson. Your kidneys have a few major functions. Horace and Steve are in charge of controlling the amount of fluid in my body, regulating my blood pressure, filtering out waste products like urea and creatinine, and maintaining a balance between calcium and phosphorous. What does all that really mean? Let's break it down.

Controlling the amount of fluid in me- When Horace and Steve get tired and lazy and don't feel like working much anymore, they stop worrying about the fluid balance in my body. I start retaining fluid. Mostly it appears on ankles, hands, and around the eyes. Edema. I should theoretically be experiencing this, but really I don't have major problems with edema. I should be peeing less and less frequently and having less fluid come out, but that's only moderately been effected so I'm still good on this. Way to go boys!

However, because fluid balance is key, many people have to be fluid restricted on dialysis, particularly hemodialysis. You should only take in a bit more than you put out. So if this starts to decline, I might have to limit what I drink. Right now, I can drink when I want, when I am thirsty. I still try to keep a close eye on it and keep track of how many glasses of water or tea I drink. And it's not just those things. Fluids are in jello, in juices, in juicy fruits, in things like ice cream. So I have to be aware of all that as well. I count my milk in my cereal and know how much I put in. It goes toward my fluid total. Overall, I try to consume about 2 L of fluid a day, maybe less.

Regulating blood pressure- This is kind of a chicken/egg question. Blood pressure and kidney disease are so tied together that it's hard to know what caused what. I've had high blood pressure that's been treated for years. And when it starts to be uncontrolled, I change meds per my doc. Kidney failure throws a bit of a wrench in that. Because many medications, including bp meds, are processed and metabolized by the kidneys, I have to be careful about which medications I take and the amounts have to be adjusted for my poor Horace and Steve so they don't get overloaded. Controlling bp when you have kidney disease is super important because high bp can damage the kidneys further. However, kidney damage makes it harder to control bp. So it's another tightrope to walk. When I start dialysis, part of knowing how to adjust to the right amounts of dialysate is knowing bp and if it gets out of whack, it's a sign to adjust some things.

For those of you who know a bit about blood pressure, low salt diets are recommended. Now often, salt substitutes are made of potassium and some people use these instead of sodium for a salty hit. Kidney failure leads to high potassium levels, so no salt substitutes. This also means that to keep my bp low and in check, I need to have a low salt/sodium diet, a low fat diet, and exercise regularly. But no weight lifting because that could jack with the catheter. :) So I have to be wary of processed foods, stay away from salty meats like bacon, sausage, deli meats. When I buy veggies or margarine or virtually anything now, I get low salt or no salt added. I read a lot of packages now. Look at a bottle of ketchup. That's a big offender. Or soup! Also a no-no. And of course potato chips and fries and fast food/take away is terrible.

Now back to potassium. Potassium regulates your heart rhythms. You want that working. At least, I sure do! When I first went into the hospital, my potassium was too high. It's fluctuated since then. I take a chalky substance that I mix with water twice a week now to keep my potassium at bay. And the list of foods that are high in potassium is long. Here are a few of the highlights- bananas, avocados, spinach, chocolate, nuts, peanut butter, baked potatoes, tomatoes, pumpkin, raisins, oranges, milk, fruit juice, potato chips, and (ironically, I think) kidney beans. These are all off the list of food choices. You can see some of those are staples that are hard to avoid and many are healthy in other ways. That's the first bit of trickiness.

Filtering out waste like urea and creatinine- These are the two big lab test markers that help determine amount of kidney function and damage. Both are high for me in my blood, indicating they aren't getting out in my urine. Now these have been coming down in the past few lab tests, and I hope they continue that trend. They say kidney function, once it's reached less than 10%, cannot be regained. But if I haven't followed the rules so far, why start now? I reckon with a little TLC, some healthy visualization, strict diet and exercise monitoring, my Horace and Steve can get a bit stronger. Now, I am not in denial. I don't believe I'll be able to will them or diet them back to 10 or 15%, but I do think we can aim for maintaining 7% or maybe even climbing to 8%. Trust me when I say some kidney function is better than none at all. :) Dialysis is important for this function because without it, there's really no way to get rid of more creatinine and urea. It makes your blood dirty. :) That's how I think of it anyway. Dialysis is like a washing machine for my dirty blood and it will come back all shiny and new and ready to rock and roll.

Maintaining a balance between calcium and phosphorous- These two bind to one another. Your kidneys make sure that the right amount of calcium and phosphorous are present to maintain strong bones. With two much phosphorous, the calcium can't get into your bones and they become brittle or you can have calcium deposits forming. Most patients in kidney failure have high phosphorous and I am no exception to this. However, these past labs had my phosphorous just out of the normal range so I'm stoked about that. As you can imagine, I am told to watch my phosphorous intake. So what's high in phosphorous? Red meat, canned foods, dairy products, chocolate, nuts, whole grains.

Basically, my diet is a shambles. lol I can't eat salty foods or high potassium or high phosphorous foods. Sometimes these oppose one another. For example, many canned veggies are recommended for their low potassium content. But, they might have a higher phosphorous or sodium content because they have preservatives. And I need protein to maintain good hemoglobin in my blood and a higher RBC count. But that has more fat and phosphorous usually. You would reckon fresh fruit would be good, but sometimes it's the canned variety that has less potassium. So as I've said before, it's a precarious balance. Carbs are fine but as I need to lose more kilos to get on the cadaver transplant waiting list, I need to watch how many I have. It's very hard to maintain the balance and it's a completely new way of eating. Before I had all the information I do, I thought I was eating healthfully and for a normal person I probably was. But eating potatoes and tomatoes is not good for me. I have to boil potatoes twice, changing the water, to bring the potassium down. And of course I never add salt to anything. I also have to be careful with sauces and dressings. Some fresh fruits and veggies mixed with some canned fruits and veggies.

I love to bake. Love making cookies, cakes, desserts, tarts, biscuits. Emily told me I should open a bakery and I've thought about how much fun that would be (and how much work!). I am going to have to learn to bake new things. Lots of lemon and lime flavorings, more fruit salads. I will still bake homemade cakes for birthdays and I won't beat myself up about having a piece. But I do have to be so careful. Alcohol only on occasion (which is okay because I was never a heavy drinker). How sad to give up chocolate though. And bananas! And coconut.

I gave up soda months ago so that's not such a hard stretch and I can still drink tea once or twice a day. I'll have to watch my sugar intake too. I'm not diabetic, but the dialysate contains glucose and that has to be counted in to my diet and caloric intake as well.

There are other factors of course. I've been cautioned very strongly against lifting heavy things. That includes picking up the kiddos, so no more giant lifting hugs. :( I have to very careful about moving laundry around and even vacuuming until I'm healed up. Carrying in groceries, moving furniture, and so many more things are impacted.

I can't take baths anymore. There's too high a chance of infection in the catheter if I do. So showers only. And when I shower, I currently have to tape cling wrap over my incisions and catheter to keep it from getting wet. That's trickier than you might think. :) I can't swim in a pool. I have limited time to swim in the ocean. I can't wear a belt over my catheter so I have to be cautious about where my pants sit and how tight they are. When I start dialysis, there will be a longer tube attached. Sheng recommended I get a leather pouch the supply company sells to tuck my catheter into it.

Our bedroom will become half bedroom, half dialysis room. No pets allowed in there. I'll have to get a table to set the bags and dressings and cleansing items on. We're moving a recliner in there. I have to dialyse four times a day for 30-45 minutes for the first six weeks. That means I go through a box a day of dialysis bags. I'll constantly have a stack of boxes in our bedroom containing supplies and will have to be home when deliveries are made so they can wheel them into our bedroom. I have to find a job that will either allow me to dialyse there or give me enough time to come home and dialyse, then return to work.

I have to eat a good meal three times a day. No skipping meals. I have to exercise, but low impact currently until I'm healed. And walking still hurts. If I travel, I can travel within Australia if I set it up well in advance so the supply company can send dialysis supplies there. It's a possibility that I might be able to travel to the US at some point but it will be tricky timing and might require paying out of pocket for dialysis in LA or while I'm in Memphis or Springfield. Once I start dialysis, there's no dialysis vacation. :) Every day, every time.

With all that being said, I'll finish up on a positive note. I get to do the dialysis in my home, where I can be comfortable and in my PJs if I want. :) I get to spend days talking to people I love and care about whether here or in the US. I get to see my husband every night and every morning and he is on board with taking care of me and changing our lifestyle as needed so I stay as healthy as possible. I've had strangers and friends alike who have said they want to test to see if they match with me for kidney donation. I get to feel the Aussie sun burning me. lol I get to hug my kiddos, hear them laugh, make them dinner and breakfast and lunches. I get to live in a lovely house where flocks of rosellas and finches fight over the bird feeder. My puppy loves me and cuddles with me. My mind is still active and ready to find a job that will let me feel fulfilled and useful again. Horace and Steve are still giving it their all and haven't given in the fight either. I have a plethora of loved ones who are praying for me or thinking kind thoughts about me. I am in a country with phenomenal healthcare and willingness to treat me and a desire to heal me. I may have to be vigilant about what I eat, but I have choices and the capacity to get the food my body needs. I'm still a fighter and a survivor.

When  you get down to it, I'm still just Kelly. Still a wife, still a stepmom, still a daughter and sister and friend. Still love birds, still fascinated by psychology, still interested in pharmacy. I just have a new challenge to face in my life. Nothing insurmountable, nothing outside of God's plan. Just seeking out a new and healthier way to live. I'll gladly take on the challenges and struggles because it means I'm still alive and planning to thrive. :) Not just survive but thrive.