Labs, Diet and exercise

[stuman413]

I wanted to share my story for the past few months...

I have (besides kidney failure) cirrhosis of the liver and will require a combo kidney/liver transplant.  (In case you're wondering, I received a blood transfusion when I was born that was infected with Hep C and am now suffering the effects of that, I don't drink alcohol and have never used recreational drugs)

So three months ago, I met with a liver transplant specialist at UCSF (when a liver/kidney transplant is needed, liver takes priority), and she gave me a list of things that I needed to do to prepare for being on the transplant list.  As I was taking care of these issues, I realized that not one time since being on dialysis for the second time have I ever had a good phosphorus lab.  I decided that I was going to do my damnedest to get a good lab.  In November 2013, I began really paying attention to what I was eating, how much I was eating and making sure that with every meal/snack I was taking my binders.  Our clinic draws blood for labs on the third Monday of every month and when that day came around, I was really nervous.  When the dietitian came around the next Wednesday she had a huge smile on her face.  All my labs were perfect.  My phos was 5.3.  If I hadn't been hooked up I would have jumped in the air I was so happy and proud of myself. 

I knew that I needed to keep this up.  So I decided that from then on I was going to keep eating the same kinds of food for meals/snacks and keep taking my binders.  Who knew that the doc was right all along, that all I needed to do was take my binders and I would be good. 

Well anyways this past Wednesday the dietitian came around again and my phos was still good...three months in a row and my labs are perfect. 

The other thing I've been doing is trying my best to exercise for at least 30 minutes every day.  For me that means going to the gym and either doing weights and the stationary bike or doing some laps in the pool.  I've made it my goal this year to really drop some unnecessary weight and try to get into better shape.  My inspiration for this change in my life is my godson.  He is going to be three in March.  He is my everything right now.  I really want to be around to see him graduate from high school, college and get married and see his kids.  I realized that if I had continued the way I was going, namely eating anything I wanted and ignoring the warnings from my doctors, that I would have less of a chance to do this.  I'm fighting for my future and I encourage everyone else to do the same.  Find your inspiration and use it as a catapult for making your life better.

[galvo]

Well done, stuman! Just goes to show what a bit of effort can achieve.

[natnnnat]

I'm inspired by your inspiration stuman!  Go you!

[kit78]

That's great! Good job!   I too have figured things out.  The cleaner you eat, the better you feel when you come off the needles.  I use to feel so whipped after I would come home eat, and go to bed for a nap.  I still take a nap, but because I am ONLY tired, not knocked on my butt.  The less junk on your food the better you are.  Meaning, Dorito's (the seasoning)or anything loaded with tons of ingredients.  I also switched from Renvela binders to Fosrenol which is a chewable tablet. WOW what a difference it made for me.  No more constipation! Going every day!  No more taking 4 pills with every meal. I detest taking pills! LOL
It took me 1.5 years to figure this all out, but I'm there and feeling like my normal self again!  Oh sure I cheat now and then, but then I come home feeling crappy.

My kidney doc told me about an APP for tracking my daily phosphorus and Potassium etc.  It's called THE KIDNEY DIET app.  I use it every day!  My doc gave me the 4 items to enter
Phosphorus - 800 MG
Potassium - 2000 MG
Sodium - 2000 MG
Protein - 65 G

(These are my numbers to stay under per day.)

Then you also enter Water, Calorie etc.

They do update it all the time but I do enter items as well.  It really sucks that the food and drug admin. doesn't make the food industry list how much Phosphorus and Potassium in each food. I have written companies and can not get info. 

[Deanne]

Well done! Was it hard for you to get started? I've been trying to walk every day. I got a neighbor hooked on walking after work, so now if I don't feel like going out, I know she's going to call to "make" me go. I had a cholesteral check done not long after I started this and it already dropped quite a bit. I've been trying hard to keep my labs all in line. Protein and phosphorus are my two biggest challenges. So far I've been pretty successful with it all, but it's a daily struggle. I REALLY want a pizza and Diet Coke. Instead, I'm having a protein-laced smoothie and I watch a lot of food porn shows (otherwise known as the Cooking Channel).

[stuman413]

Kit78:  That's great that you've figured out what works for you.  I used to have the same problem with feeling like crap after treatment but now it is a rarity.  I'm taking Renvela powder myself and although I do struggle with some constipation, my healthy diet of lots of fruit and veggies (low phos/potassium) really seems to help.  I do have to have my once per month fix of junk food.  Usually french fries, but I always ask for no salt; by doing that they have to fry up a fresh batch so you always get hot crispy fries. 

Deanne:  I started slow, just some walking at first then progressed to going to my gym.   It can be intimidating to see well fit people exercising their collective butts off but I try not to think about it.  I used to be an athlete and something that I've always had to remind myself is "Play your own game".  This helps me focus on what I can do, not what others are doing.  I make sure to limit myself to what I am capable of doing and then stop, rest and go on with the rest of my day.   As far as protein is concerned, I always have a fresh turkey breast cooked and sliced for sandwiches.  Each slice of turkey has about 15 grams of protein so I'm making my daily goal with just one sandwich, but I don't stop there.   I also incorporate a small protein shake made from whey protein powder, frozen fruit, apple juice and a small amount of yogurt.  My dietitian recently told me of a study that was published about protein loss during dialysis and what the best way to replenish it is.  Most people on dialysis know that you lose about 15 grams of protein per treatment.  The study discovered that the best way to replenish that lost protein is during treatment.  I've been getting a low phos protein bar from my local grocery store for every treatment and eating it about halfway through.  There are probably better proteins to take in (like my turkey) but I find that if I eat too much during treatment I tend to have lower bp's.

[SooMK]

This is such a great thread. The battle to eat good food and get exercise never ends but it gets self-perpetuating. You start feeling better and stronger and become increasingly aware of how much bad food there is out there. Processed foods are the worst. I had hoped that a good diet and exercise would slow down my CKD (and perhaps it has for all I know, although time is running out) but at least I have been feeling good even as my numbers get worse. I believe that our "food" is killing us and it is so exciting to read these success stories. Great post Stuman.

[Deanne]

Maybe this belongs in separate thread, but since it came up.....Since eating during treatment isn't an option for me (PD on cycler overnight, so unless I start eating in my sleep.....), is there a better or worse time of day for it? I try to spread out my protein consumption during the day, but it seems like I end up having most of it in the afternoon and evening. I think I should be having more in the mornings. That one is still a struggle for me. I don't always want to eat that much as soon as I get up.