You are what you eat !

If that is true, I am a very boring person these days.  Due to the state of my kidney function, my diet is a very difficult one as an active 25 (almost 26.shhhhhhhh) to follow.  It has been changed a couple different times, only getting harder and harder to stick to and follow.  A lot of you might not know this about me but I am a closet fat kid, the only reason it doesn’t show is because I am as tall as I am.  I love food, trying new things and eating as much as I can of the food that I love.  You have heard me reference different parts of my dietary restrictions in other posts, but after spending a few days in Vegas I was given a little reminder of just how hard following a diet can be.

When I was first declared to be in failure, I met with a nutritionist that my transplant team has on their staff.  The first change that came out of that meeting was a lower sodium intake which I got pretty good at finding ways around and still having my food have a decent taste to it.  (Just a little game, start checking the nutrition labels on the food you buy and you will be amazed how much sodium is in there.) Also in that meeting they told me at one point I will have to cut back on other things such as potassium, phosphorous.  Potassium, by the way, is in just about everything good.  Fruits, veggies.  now I know what your thinking, Fruits. Veggies. Good?? that was one of the ways I found to to deal with the low sodium diet was to eat those instead of a bag of chips or some thing saltier.  There are three different levels of potassium that they used to measure how much a person can have; low, moderate and high(or don’t even think about it). Some items that fit into the low category are  apples, grapes, cabbage, green beans.  Some items that fall into the moderate category are blackberries, corn, grapefruit, broccoli, carrots.  Finally, items that fall into the high(don’t even think about it category) are banana, milk, kiwi, spinach, tomatoes.  The problem with too much potassium is it is broken down by the kidneys, but has a much more crucial impact on the heart.  I started having heart palpitations and an irregular heart beat as a result.  The reason it got to that point is with a month, sometimes two between appointments a a lot could change in terms of my function which changed how my body dealt with the food I ingested.

Phosphorous, also has a bad affect on the body when the level gets too high.  Phosphorous and calcium work opposite each other and phosphorous breaks down calcium.  When my kidneys got to the point that they weren’t in taking the calcium I ate, the phosphorous started to break down the calcium in my bones and that is what lead to the hypocalcemic episode that I had that I mentioned previously.  Much like potassium, phosphorous is in many things that are in a daily diet for anyone.  Unlike the potassium however, there is a pill that I can take known as a binder that “binds” to the phosphorous and helps keep the limits down by carrying it out another way.  That pill has to be taken with food to have the best chance to really bind to the phosphorous. 

The area of my diet that has actually increased in the amount that I am allowed to take in is the protein.  One thing dialysis does is lowers my red blood cell count, making me anemic(sp).  It is suggested that on days I have treatments to take in as much protein as possible to help replace what was removed earlier.  Seeing how peanut butter and meat are some of my favorite things, this made me pretty happy.  This is the first time in my life I have been urged to eat a lot of protein.  My whole life I was instructed to have a low protein diet because it taxed the kidneys too much and would make them run out of steam earlier than if I limited the amount I had. 

Without question.  The hardest of my restrictions that I have to follow is the fluid restriction.  I have already touched on this in the earlier posts but since it is technically part of my diet, we will talk about it again.  2 liters is all I am allowed to have per day for fluid consumption.  May sound like a lot, and to some of you it might be.  Not me.  Just days before i started dialysis, I was having 3-5 liters of water before lunch alone.  Another way to look at it is 4 Poland Springs water bottles, 8 8 ounce glasses of something. Also, anything that is left out at room temperature that takes a liquid form counts towards the total. Ice cream, ice chips, soup all have to be considered.  This is one thing that I have been extremely opposed to since I was told.  I actually talked them (nutritionist at dialysis center) into allowing me the 2, they were going to only “allow” 1.5.  The reason I have been opposed to it is most people on dialysis are not 25, not my height, and not nearly as active as i still am, as most of them are older.  Working as much as i can, still playing basketball to try to stay in shape and the just general hustle and bustle of life leaves me thirsty all the time.  It was very difficult to monitor how much i am drinking,  that was until Lauren hooked me up with a 32 ounce Nalgene bottle for Christmas so now i know i am allowed to have two of those a day. 

Now that I am on dialysis, I am allowed to “cheat” a little bit.  The dietitian in the dialysis unit at MGH informed me that if i was to cheat, it should be the day before a treatment as the machine can actually remove a lot of the dirty elements form the blood stream much like the kidneys would usually do.  The only element it wouldn’t be able to handle is the phosphorous.  She obviously didn’t know who she was giving this information to.  The only issue is, the treatment doesn’t go as well, and I don’t feel as good after a treatment if I cheat the night before so I usually don’t.  Sometimes, it is very difficult to have a mean that fits all the criteria the my diet entails.  If you eat out, all that food is prepared for flavor, which usually means a high sodium level, even some salads you can get out have high counts. 

Now that the holiday season is over, I think I did pretty good in terms of monitoring what I should and shouldn’t have.  The people I eat with the most, Lauren and my family have adjusted what they eat to help support me.  Its hard to crave something you shouldn’t have when its not around you.  My last few treatments haven’t gone quite as well as they had been and I’m still blaming the buffets for that.

 

Perspective

The way we look at things plays a huge roll in how we get through them.  This is true for our job, personal struggles and just daily life in general.  In my case, the way I look at a looming kidney transplant and all the events that lead up to it are what make it possible for me to get through it with the positive attitude that I have been able to hold.  If someone uses a saying that I like I tend to steal it. For example, when I worked with my Uncle Tommy on the Cape, he used to always say “it is what it is”. The reason that I liked this saying is that a lot of times there are aspects of our life that we have no control over for one reason or another so getting upset, pissed or down over it doesn’t do any good and just makes things worse. The most recent saying that I have become fond of is “find the good”, which I have picked up from my incredible girlfriend, and is also one of the saying of her step moms company, Zola Goods.  No matter how crappy the situation there is good things that can come out of it so make sure you take a close look. 

 

One might think what is the positives of being 25 and in kidney failure and now tied to a dialysis machine 3 days a week.  They have a good point in asking that question, but its there, trust me.  Lets start from the beginning.  Okay, so maybe saying there are positives to being in kidney failure is a far stretch but there is good that comes out it.  For one, how many people truly know how loved and supported they are?  After the fundraiser that my family threw for me this past summer, i now know, and damn.  The number of people that showed up truly humbled me, and I know I have talked about this before but looking back on that day it still blows my mind.  I was lucky and got a disease that hasn’t really slowed me down in my life.  Anyone who has ever walked through the doors of Boston Children’s Hospital will agree that it is a hard thing to do.  There are so many kids that have such difficult diseases that their daily life is anything but normal and if I was to feel bad for myself and the circumstances that I have to deal with would be an injustice to those free spirited kids because I got off easy.  Another reason that it has its positives is I live just outside Boston.  FYI, the docs here are pretty badass, and I have the utmost confidence in them.

 

Now the positives to dialysis, and dialysis during the holidays are much easier to find,  One,  after feeling like crap for the past few months, and truly not being 100% my whole life, dialysis gives me back energy and i feel incredible.  Along that line, I had energy to do things over the holiday season that i might not have been able to do, most important to me is I got to spend the holidays with Lauren and my family and friends.  Alternative, feeling good and in a hospital room by myself.  Yes I will be able to have visitors but that’s obviously not the same.  Yes i wish i had my transplant when they first told me to get ready almost a year ago so i was just about out of the recovery time, but it wasn’t meant to be.  The reason that the study was placed on hold is two of the participants rejected their new kidneys months after they were supposed to be out of that risk period one having to get a traditional transplant after all.  Obviously not something I want for myself, so by giving them time to figure out what might have caused that to happen will make it so i don’t have to go down that road myself.

 

What prompted this post was the fact that I had to go for a dialysis treatment on both Christmas Eve and New Years Eve and neither one bothered me and how surprised people were by that.  I had to be at my treatments before 6am on both those days so its not like it cut into my celebration plans.  Secondly, Lauren was able to come with me.  Yes we slept most of the time but there is something about having her there with me that just makes the time go by faster.  We were also voted cutest couple in dialysis on Christmas Eve, we were the only couple there but I’m still chalking it up as a victory. (see picture below) Due to the fact that I had treatments on those days, I was able to eat a lot more than I would have been able to due to my dietary restrictions.  Something I have become quite annoyed by.  As I said in the update email I sent out this past week, I hope everyone had a good holiday.  One of my new years resolutions is to get one post in a week, might not be as long and in depth as these have been but there will still be plenty to talk about now that Jersey Shore is well into its season and for some reason is causing a pandemic across the country.