dry weight, that elusive, magical number

The elusive dry weight. That magical number that controls every treatment. Take off too much and you can experience the dreaded cramping.  Take off too little and you leave with that heavy feeling, or even worse. The bottom line is that the kidneys control the fluid in your body, and how your body gets rid of it. If they are not working properly, your  body is going to have a  fluid buildup somewhere.

I experienced fluid gain all my life. By the time I was 20, it was nothing for me to gain up to 10 lbs. in a day,  then lose it by the next morning, and repeat. I consulted several doctors, but even with a childhood history of bladder infections and UTI’s they were not concerned, and preferred to diagnose me, at 120 lbs (5’2″ and a perfect size 8), as moderately obese.

Fast forward 30 years, and out of the blue, I experienced sudden, adult onset asthma, which would haunt me for the next 20+ years. It was the Fall of 1992, and I spent most of the next few years in and out of  ER’s and hospitals with severe asthma  attacks, bronchitis, and pneumonia. My weight shot up due to all the steroids and meds needed to control my asthma.  In 1997 I got my first elevated creatinine.

What does all this have to do with dry weight, you ask? Well, fluid is fluid , and if you are having a problem with it (either before or after dialysis), I suggest you and you doctor(s) dig deeper.

When my creatanine first elevated, I consulted with several nephrologists, had a kidney biopsy, and numerous other tests to find out what was going on.  The biopsy indicated that my kidney diseae was most likely caused by childhood reflux.

I asked my nephrologist, at one of the leading medical/research centers in the Midatlantic region, what this meant, he replied “Your kidneys are like a car. They run on 6 cylinders. Yours are running on 4. They won’t last forever.” When I asked him if this was his official diagnosis, he hung up.

My  family doctor  and I continued to closely monitor my kidney function for the next 10 years. I avoided most medications that might compromise the kidneys, ate a low protein diet, added sodium bicarbonate tablets to help flush the kidneys, and whatever else we could find to help extend the life of my kidneys.

But my lungs were the real problem, and it got to the point where I told my doctor that my lungs would eventually kill me, not my kidneys.

Little did I know.  as I have mentioned so many times, I lived with my head in the sand when it came to dialysis. Couldn’t even say the word, much less deal with it. But my lungs continued to deteriorate, refusing to respond to any medications, and my pulmonologist wanted to try one last ditch effort to see if he could provide me with some relief. Bronchial thermoplasty, an out-patient procedure used to cauterize the lungs, and alleviate the inflammation that causes asthma.

Now here is where it gets interesting. During the procedure I crashed, had to be intubated, and was admitted to the hospital. That was when I had to face the facts. I woke up staring at the nephrologist who explained that my kidneys were finished. Upon further discussion, he said that there were types of kidney disease that never presented with renal symptoms, but rather as pulmonary issues, culminating in fluid in the lungs.

Bingo! all those years I felt like some one had stuck an air hose in me, it turned out to be a garden hose, and I was literally drowning with each breath I took. My kidneys, not my lungs, were the culprit after all.

Here I am off the coast of Maine,  four years ago. This photo is exatly what it felt like all those years, to be a small island drowning in an ocean of water.

Which brings me back to dry weight!! Everyone retains fluid differently, edema, belly, ankles, fingers, and, newsflash, lungs! Within days of my first dialysis treatment, my lungs cleared up, and I lost almost 30 lbs. of fluid! I have not wheezed or been short of breath since!

I also lost physical weight in the first months of dialysis, as it was almost impossible to eat. Which made that dry weight number even more elusive. I would always go to in center dialysis under the weight I left after the previous treatment. So we would agree to just do a rinseback, until that inevitable day I felt a tingle in my foot, and within seconds, the cramping started.

Pain is not something I cringe at, but that first dialysis cramp brought tears to my eyes, and foul language to my lips. I was literally begging for mercy. Give me natural childbirth, but don’t give me dialysis cramps!!

They say one of the indications of retaining fluid on dialysis is rising blood pressures.  When I first started dialysis I was taking a Viagra, and a blood pressure med, and my blood pressures dropped from the scary 200/160 to a much more acceptable 140/80. But then it slowly started to rise again. If we tried to take off even the slightest fluid, .6 or less, the cramping would start. but I was ending sessions with a blood pressure of 170/100. This is because the more fluid you retain, the higher your blood pressure soars.

About that time I started home hemodialysis training on the NxStage. System 1. Within the first week, after only 4 treatments, my blood pressure had crashed, and I lost another 2 kilos of weight.

That is when I learned about fluid, and cellular fluid.  Nxstage treatments are particularly good at pulling fluid from the secondary, or cellular level.  After 2 weeks on NxStage I had a new dry weight, and since then I rarely take off more than .4, and most treatments, nothing.

This is what it feels like to be free of fluid, for a change, kind of like the rim of the Grand Canyon, where I lingered February 2012, with miles to go, before I drink!

Grand Canyon - Hermit's Rest 042

So why is it important to spend some time talking about dry weight? Because it is necessary,  almost critical, for you to learn the nuances of your body, and how, when and where fluid affects you. Everyone is different. Dialysis is not only not static, but like parenting, just when you think you’ve figured out what stage you’re in, it’s guaranteed to change. If you aren’t in tune with the nuances of YOUR dry weight, you could miss an important clue, and end up in trouble.

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