Liquids are driving me to drink -- I wish!!

Many if not most kidney failure patients suffer from the loss of the ability to urinate.  In my case, the sensation is still there.   What little urination there is generally occurs when I poop.  Every once in a blue moon I pee a halfway decent stream and think that I am on the mend; I realize that, barring a miracle or a transplant, this is not the case.  (I'm not too keen on the idea of a transplant right now because there is always the chance that the transplant will fail, leaving me right back here.)

Anyhow, this leaves my body with the following methods of dealing with whatever liquid I drink:

• sweating it out (my workouts are just starting to make me sweat -- I look forward to running in warmer weather);
• pooping it out (a decidedly unsavory option);
• putting it in my tissue structure or my cardiovascular system (one is uncomfortable, the other is unhealthy); and
• removing excess liquid through dialysis.

The goal is to keep my weight as close as possible to my "dry weight" (what I weigh after a dialysis session - currently 90 kilos or 199 pounds).  To make things easier all the way around, my doctors recommend that I only drink a liter of liquid per day, and less in emergency situations -- for example, if I have to miss one or more dialysis sessions.  This is not easy.  Try limiting yourself to a liter of liquid today.  Suffice to say, it can be done, but it isn't any fun.  Ice cubes count; ice cream counts; the cream in your coffee counts (not to mention the coffee); fruit pops count; the water you may swallow in the shower or while brushing your teeth counts.  Even when I intially gave it a good effort, I was pounding two liters a day or more.  I tried to justify this with the "I'm a big guy" defense; I can still see my nutritionist Lou giving me that "fish-eye" look when I mentioned this.  Lou broke it down for me into terms that I can work with:

1.  I can drink a cup of liquid with every meal; this leaves me with one cup for the rest of the day.
2. The "rinse and spit" technique helps a lot.  Of course, this can't be done at the dinner table, but since I can sip and swallow during dinner it never comes to that.
3. Sucking on ice cubes (or drinking the melted liquid from them) is much better than drinking down a glass.

I also find that a piece of candy can help resist the urge, and that taking a tall glass with a cup of liquid and filling it with ice cubes makes it look like I'm getting more than just a measly cup of liquid.

Even after all this, sometimes the urge to drink a liquid -- any liquid -- will be there, just like I'm dealing with the occasional urge to smoke (two months smoke-free and counting, by the way).  This is where my long-lost buddy Will Power saves the day.  And when I am tempted to imbibe, I call on Will's friend Common Sense.  I'll have a shot or a small mixed drink every once in a while.  No beer, though -- I won't take that chance.

All right!  The clock just struck 12 noon.  Time for lunch -- today I'm going light.  Yogurt and toast I think.  I'll make up for it at dinner; tonight it's oxtails with onions and asparagus and zucchini on the side.  And maybe a few onion rings.

Hilva

This is the section about my wife, Hilva.

This is more than likely the only time that I will mention her by name in my writings, because that is the way she wants it, and I respect the hell out of that.  At the same time, writing about my experiences without mentioning her would be like baking a lasagna without using the kitchen:  it can’t be done.  She kept believing when I stopped; she kept pushing when I quit.  She kept that last little spark of hope inside of me from going out.  She is the one who signed most of the medical forms and releases, so her name is on all of the bills.  She is the one who had to clean up after me when I could not clean up after myself; she washed and cooked for me when I could not do so. Perhaps most important, she convinced me that it it okay to ask for help if help is needed, that you can’t do it all alone, and that you won’t get help if you don't ask for it.   I could never live long enough to repay these debts; all I can do is give my eternal thanks, and be the best husband I can be for the remainder of our time together.

Dialysis - Initial Challenges

When I left the hospital (for the first time) and started outpatient dialysis sessions, I felt weak and dizzy all of the time.  The dialysis procedure basically sucks seven to ten pounds of moisture out of the body.  While under "the spell", simple things like walking become difficult.  Washing clothes is an ordeal; cooking a simple meal is tortuous.  I pushed through this to the best of my ability because I wanted to be as little of a burden as possible to my wife  Unfortunately, I was not always successful, and still proved to be a big burden to her at times.  It pained me to see what she had to endure.

The logistics of getting to and from dialysis were burdensome as well.  My dialysis center is a block away from George Washington University Hospital where all my doctors are, but is miles away from home.  Since driving was not an option, I had to either take a cab (quite expensive) or use mass transit (not the easiest thing to do in my current condition).  Since my wife was at work, I had to fend for myself on a daily basis.

As a result of the above challenges, I did not make all of my dialysis sessions as I should.  Some days I couldn't afford the transportation; some days I was physically unable to make the trip; some days I just didn't feel like it.  In retrospect, I see that the only people who suffered from this were me and my wife, as insufficient dialysis simply lengthened the healing process.

One of the biggest hurdles to clear was getting used to the duration of each session -- in my case, four hours and fifteen minutes.  Sitting in "the chair" is the worst kind of slow torture; it's like standing in a jam-packed subway car with elbows, umbrellas and God knows what else poking into you.  For four hours.  At first, my only relief was sleep; then I enlisted my iPod to do some heavy lifting.  Food was and is a great relief and a flash point in relation to "the chair".  There are signs all over the place prohibiting eating, but the rule is flouted with regularity (just like the "no cellphone" rule, which is ridiculous).  Every once in a while, the staff (read certain staff members) would take great delight in enforcing the no-food rule.  It was done without fairness or equanimity, as I can attest.  I like to kick and scream and rail against authority in these situations, but prudence and logic dictated that I wait this situation out.  Sure enough, slowly but surely eating in the chair has become "accepted" by the staff.  Last holiday season, all dialysis patients were given one of those freezer-to-microwave-to-plate food containers -- complete with a knife, fork and spoon.  On the same day, they gave us Chinese food; I used the container to take my food home, ate the food, washed the container out, and put it away in the cupboard.  I haven't used it since -- but I can't wait for the next no-food crackdown!

OK, where was I -- oh yeah, the long dreary dialysis sessions.  It's not so bad now -- let's say it's tolerable.  The addition of individual TV sets has helped immensely, as has the relaxing of the house rules.  Most importantly, my body has healed to the point where I can sit and take those 4.25 hours of dialysis without being in too much discomfort.  The last hour is still the worst, though -- freaking interminable.  I remember my very first dialysis session in the center; somewhere in the third hour I swore that the clock actually did not move.  It was about 2:05pm; I went into one of my daydream sessions and came around thinking "Wow, that should have killed some time."  The clock read 2:07.  Well, yeah, it did kill some time....

The main thing I've learned from these challenges is that the moment you think you've mastered them all, another one pops up and pees in your Cheerios.  The thing to do is keep everything in perspective -- keep a 10,000-foot view, as it were -- and realize that, in time, all challenges shall be met.

Introduction

My kidneys failed (stage 5 renal failure) in October of 2009.  I went to the hospital because, frankly, my wife insisted that I do it.  I honestly thought that I was getting weaker because I had stopped working out, and ignored all the other things that were wrong with me (dizziness, shortness of breath, lack of balance, loss of appetite, etc.).

Anyway, my wife and I got into a cab and we went to the emergency room at George Washington University Hospital.  I figured that I would just be there for a few hours; I did not see home again for three weeks.

The toughest - but not most painful - part of my hospital stay was learning that I had ESRD or End Stage Renal Disease, which is the fifth and final stage of Chronic Kidney Disease (CKD).  The only options for me were:

• death; (um, no thank you)
• a kidney transplant; (odds of this are really low in light of the 90,000 or so individuals ahead of me on the recipient list)
• dialysis; or
• a miraculous recovery (not happening, but there's always hope)

In case you're interested, the most painful part of my hospital stay was having a catheter shoved all the way down my penis into my bladder for urine recovery.  They say that it hurts going in, and they are right!  For the record, they also say that it doesn't hurt when it's taken out, and that is a damn lie.  Irt hurts just as bad.

Dialysis is the procedure by which excess fluids and "poisons" are removed from the human body when the kidneys no longer function as they should.  There are different methods; the method I chose was three times a week (Monday-Wednesday-Friday) at four hours per session (actually, my sessions last 4.25 hours).

From the beginning I was very hard-headed about the whole procedure.  I fought the process and the staff every step of the way.  It took an entire year for me to get with the program.