What is Normal?

I was diagnosed with IgA Nephropathy at the age of 29.  Until that time I had shown no symptoms, other than during my second pregnancy when my OB/GYN kept prescribing antibiotics for urinary tract infections because my specimens always showed too much protein.  I was 23 at that time.  Toward the end of my pregnancy she sent me to a urologist, who found nothing wrong.  Soon after my daughter was born I had x-rays of my kidneys done that showed "scarring" in both kidneys.  I was then sent to a Nephrologist, who told me that it was likely nothing to worry about.

Fast forward a few years.  I started having palpitations a lot, so I went to the doctor and had testing done on my heart.  It was at that time that I learned I had high blood pressure.  They did lab work, and a week later, I learned that I had already lost 40% of my kidney function.  They had no idea why.

So back to the Nephrologist I went.  I had a biopsy which confirmed my diagnosis of IgA Nephropathy.  My doctor told me in a phone call that there was nothing I could really do to stop the damage, other than controlling my blood pressure (which was high because of my lost kidney function) and limit the amount of protein I ate.  So for 13 years I did that.  I saw my kidney doctors every year, tried to take good care of myself, but all the while my kidneys were deteriorating.  It was a slow process.  So slow, in fact, that I barely noticed my energy level waning.  It wasn't until years had passed and I looked back over all the ways my lifestyle had changed that I realized just how big a toll CKD had taken on me.

A little more than two years ago, I spoke to my Nephrologist on the phone at work.  She told me my GFR (Glomerular Filtration Rate) was at 10%, and that I should start planning to begin dialysis within the next few months.  That was in October.  By May I was scheduled for surgery to have my Peritoneal Dialysis catheter placed.  By that time I had quit a very physically demanding job for a desk job.  I was spending my entire weekends on the couch, too tired to even do housework.

After I had been doing dialysis treatments for about three months, I started having bursts of energy like I hadn't had in years.  Is this what it's like to be normal? I wondered.

I have no idea what any other woman at my age is able to accomplish in one day before collapsing into an exhausted lump of aches and pains on the sofa.  I have no idea what it would be like to wake up feeling "normal" and I have no idea how close to normal I am, even with dialysis.

There are some days when I think I could take on the world, and other days when I think my couch might swallow me up.  Do other people who aren't sick have days like that?  How often do they have those world conquering days versus those being eaten by the couch days?  Where do I fall on the scale of average women at 45?

I suppose in reality, we all, sick or well, have to determine what "normal" is for ourselves and learn to accept whatever that means.  For me it means a very active week, Monday-Friday and a very, almost sinfully lazy weekend.  It means turning down invitations from friends because I'm just too darned tired to get dressed.  It means worrying that the things I need to do will not get done.  It means I have to learn how to be okay with my own pace of completing tasks and managing my life.  Most of all, it means I have to stop comparing myself to other people who have bodies that function like they're supposed to.  I am not like them and they are not like me.  I am doing the best I can, just as they most likely are.

I am proud of myself on days when I accomplish ten million things before noon.  I guilt myself on days when I've done nothing before noon.  Somewhere in there, I know I need to find balance, but when a person so rarely wakes up feeling energized and empowered to take on the day, it's hard to put the brakes on.  You don't know when you'll get another "good" day again.

Normal.  Who really knows what it is anyway?  Maybe "normal" people don't even know?

I definitely know I'm not doing myself any favors by trying to keep up with them, and I'm discounting all the effort and strength it takes for me to function as well as I do considering the obstacles I face.

If you're struggling through ESRD, you are as normal as you can be.  Accept that about yourself, be proud of yourself for keeping on keeping on.  Those of us who are living thanks to the help of a machine, after all, are probably the exception to normal.

Rest For the Weary?

Having a job and a family and a handy dandy dialysis cycler beside your bed can make for a demanding life.  Even after having been on Peritoneal Dialysis for a little over two years, I find myself occasionally feeling overwhelmed with the unexpected challenges that seem to come from out of nowhere.

Like yesterday morning.  I woke up to get ready for work when my alarm sounded at 6:30, disconnected myself from the machine, and stepped into my bathroom (which conveniently is about three steps away from the bed).  Now, I stopped using drain bags a long time ago, probably three weeks into dialysis, when I figured out how much easier it was to run the drain tube into the toilet and just flush it in the morning.  However, yesterday morning when my bare foot hit the bathroom rug, I stepped into a soggy, cold mess.  At some point during the night, the tube somehow got pulled out of the toilet and the fluid that drained from my abdomen was pooled up on my bathroom floor.  My clothes from the night before, left lying on the bathroom floor were saturated, the rug was saturated, and I had to use about 4 towels to sop up the rest of the mess.  Thankfully, the tube wasn't lying on the floor all night, otherwise the folks living in the apartment beneath me would have suffered some rather unpleasant leakage through their bathroom ceiling.  Lesson for the future:  Tape that sucker to the toilet from now on.

It wasn't a great way to start the day, and coming home to a bathtub filled with dialysate soaked towels, clothes and rugs wasn't a picnic either.  I found myself thinking, "Oh great! Something else to stress about."

I work part-time and I have a 9 year old son.  I'm a single mom with no family that lives close by to help out, so yeah sometimes I get overwhelmed.  Heck, I think I would get overwhelmed without PD in the mix.  So when I have days when I'm beating myself up for forgetting to sign an important form for school, or for having dishes in the sink, or for not wanting to go out with friends on the weekend, I remind myself of all the "extra" stuff that has become a part of my life as a result of dialysis.

No one else that I know woke up to a bathroom flooded with bodily fluids yesterday.  No other mom at my kid's school has to worry about throwing out 5 extra bags of garbage every week (and that's not including breaking down dialysis boxes and throwing them out).  None of my co-workers have to wake up and disconnect themselves from a machine every morning, or plan their bed-time so precisely that they know they'll be able to be up and Adam on time the next morning.  No other mom in my kid's school has ever made her kid late in the morning because her cycler (for some reason) took a little longer to finish its job and she had to lie still in bed until it finished because if she got up and started moving, the drain-pain would be excruciating.

At my last doctor appointment I bragged to my nephrologist (the ever-affable Dr. Tsai) that I am often amazed at my level of energy and the amount of "stuff" I can accomplish in one day.  I think back to 3 years ago and remember how completely useless I would feel after a day at work, and I'm amazed that I can work, run errands, decorate for a party, buy groceries, pick up my kid, go for a walk and make dinner all in one day and still have enough energy to take a shower before I go to bed.  Dr. Tsai never discourages me.  He encourages me to stay active and reminds me that keeping my life relatively normal is the best thing for me; but he's also realistic.  "That's great," he said with his kind smile, "you just need to make sure you're taking time to rest."

Rest?  Really?  I take my sleep medication at night and I usually get a good night's rest, but I don't exactly give myself permission to just spend a day taking it easy.  If I do spend a Saturday on the couch because I'm tired, I guilt myself all day about not doing laundry, not taking my son to the park, or not going to visit family or spend time with friends.  It sounded like Dr. Tsai was giving me permission to be lazy sometimes.  After I left my appointment I started thinking about my own perception of "rest" and I realized I don't know how to do that.  In my mind "resting" and "being lazy" seem like the same thing.

I realize where this perception comes from.  My mother always employed the word "lazy" whenever we didn't feel like doing something we should have been doing, like cleaning our rooms or helping her in the kitchen.  My dad referred to me as "lazy" one time when I had cramps so bad that I couldn't go help him in the garden.  My ex-husband and a couple of ex boyfriends (even the ones I dated while in the exhausting grip of ESRD) loved calling me "lazy" when I would come home drained and ready to collapse in a heap on the couch.  I've never been allowed to do this "resting" thing.  But I need to learn.

On the days I feel great, I go, go, go!  That's my Monday-Friday grind.  I work, I manage my life, I deal with the garbage and the shopping and the routine that keeps me on schedule for the next morning.  I work in a field that requires me to be giving, thoughtful and present for meeting the needs of other people but I often fall short when it comes to paying attention to what I need.

So today I am giving myself permission to sit on my couch.  I'm going to read and watch junk TV and maybe even take a nap.  Perhaps I'll watch some movies with my boy, and for lunch, we are having peanut butter and jelly sandwiches.  I vow to not let myself feel like a lazy slob because there's a load of laundry in the hamper, or because there are 4 dialysis boxes sitting in my bedroom that need to be thrown out.  I'm not going to make myself feel bad that I'm not at some festival, or visiting my family, or going out for a night of fun with my friends.  I'm going to put my feet up and pat myself on a the back for all I did accomplish this past week.  I'm going to feel good about all the "stuff" I'm going to get done starting Monday morning when my feet hit the (hopefully not soggy) floor.

If you are a dialysis patient, I hope you can do the same.  Give yourself credit for all that extra stuff you have to deal with, and for all the stuff you get done every day despite the challenges you face.  Be good to your body by giving it time to relax and recover from all you put it through every day.  Your body will thank you.  And your nephrologist will probably be proud of you as well.

Here's wishing you a perfectly guilt-free "lazy" day!

ESRD, Dialysis and Food...The never-ending battle

ESRD wipes you out.  Dialysis, even when it's doing a great job at cleaning all the unwanted toxins out of your system, also leeches important nutrients your body needs, like protein, for instance. While it is important for us to replace all those needed nutrients that dialysis removes, it's also imperative that we limit things like salt, potassium and phosphates and most ESRD patients also have to severely limit their fluid intake as well.

I'm one of those lucky people, for now anyway, who doesn't retain fluid.  My dialysis nurse commented the other day that she's never had an ESRD patient whose kidneys still produced so much urine.  My kidneys work really well at eliminating excess fluids, but they don't filter waste.  That's probably one reason that Peritoneal Dialysis works so well for me.

However, like many other ESRD patients, I struggle to keep my protein levels up and keep my phosphate levels down.  The biggest dilemma with this is that foods that are high in protein (nuts, meats, beans) are also very high in phosphates.  Phosphate levels that are too high can be deadly.  Too much phosphate in the blood can lead to heart disease, skin disorders, blood-flow problems, itching, and weakened bones.  Lack of protein in the diet of ESRD patients has been directly linked to mortality rates in dialysis patients. In other words, not consuming enough protein can reduce your life-expectancy.

The nurses and doctors at my dialysis clinic are always preaching about phosphate levels, reminding patients to take their phosphate binders with every meal and snack, and expressing the importance of keeping protein levels up.  Apparently, there are a lot of ESRD patients out there who neglect taking their binders on a regular basis.  When I first started dialysis and was handed a huge bottle of binders to take with my meals I felt a little overwhelmed.  First of all, the bottle itself was humongous, the pills are HUGE, and they wanted me to remember to take two of them every time I ate something.  I did a pretty good job of it most of the time, and at my next appointment a month later, my phosphate levels were too low.  Those pills really work. IF you take them.  I confess that after that one lab where my phosphate levels were too low, I doubted the need for binders and slacked off on taking them.  As a result my phosphate levels shot up.  I know the importance of keeping phosphate levels down, but I still forget to take my binders sometimes.  To help myself remember, I have put a bottle of binders on my desk at work, one on the end table in my living room, one in my kitchen and I keep one in my car.  That way, I never have an excuse for not taking them whenever I eat.  I can have a milkshake in the car (high in phosphate because of milk) without worrying about my phosphate soaring because I have my binders right there with me.  It's working really well for me so far.

My biggest struggle is keeping my protein levels high enough.  I don't particularly enjoy eating meat.  I like eggs, but not every day.  Those are two of the lowest options for consuming protein without raising phosphate levels.  The other problem I have is that my appetite comes and goes with great irregularity.  Some days I feel ravenous all day.  Other days, I don't care to eat at all.  Honestly, I feel terrible when I don't eat, but at the same time, my body is telling me that food is disgusting and I don't want it.  I often have to force myself to eat.  The whole time I'm forcing down that sandwich or salad or scrambled egg, I'm saying, "You'll feel so much better after you eat."  It's true, I do feel like a new person once I've eaten, but it gets really old, having to force down your meals every day.

When you have ESRD and are on dialysis, you can't help being almost obsessed with what to eat or what not to eat.  I've struggled with feelings of guilt, actual guilt, over eating a small dish of ice cream, or having a bowl of cereal with real milk for breakfast.  Eating starts to seem like a bad habit, akin to smoking or alcoholism, when you live with the knowledge that everything you put in your body could potentially poison you.  I'm glad I don't have to worry about fluid intake.  I can only imagine how much more awful I'd feel if I had to stress over drinking a glass of water when I'm thirsty.  My heart really goes out to other ESRD patients who have to live with strict fluid restrictions.

I wish I had some helpful advice to give to other folks out there who are struggling with these food issues, but all I can recommend is that you do your best.  Take your binders, try to eat healthy and don't be too hard on yourself when you slip up once in a while.  There is a lot of information and education online for ESRD sufferers, but very little helpful guidance on the issues we have with food, appetite and the mental toll that constantly worrying about such things can have on you.

Maybe I'm the only one out here who sometimes feels a little crazy over constantly thinking about what I eat and how it's going to show up on my lab work, or how it's going to further destroy my body, but I doubt it.  It seems like, instead of one more article about how to eat right for ESRD, someone out there could address the concept of how to live your life with ESRD without letting worries about food consume us.