Stayin' alive with ESRD

Article published: Oct 29, 2007

Stayin' alive with ESRD

By Kathy Alter
GazetteOnline
kathy.alter@gazettecommunications.com

Ceder Rapids I’ve got my Halloween costume picked out for this year. It’s a no brainer.

I’m going as a zombie.

I won’t have to buy a cheesy costume or use garish makeup or masks. I’ll just be me because what me is of late could be classified as the living dead.

I’m a kidney dialysis patient and if it weren’t for a mechanical Dutch housewife scrub-a-dub rubbing my blood clean three times a week, I would have been ashes in my urn last March when my kidneys finally gave up the ghost and quit working.

It’s all new to me, this End Stage Renal Disease (ESRD) – how’s that for a fear-inducing diagnosis – but I’m not the only newbie, not by a long shot.

Take a look at some facts from the National Kidney Foundation.

# 20 million Americans - 1 in 9 adults - have Chronic Kidney Disease (CKD) and another 20 million more are at increased risk.
# Heart disease is the major cause of death for all people with CKD.
# Hypertension causes CKD and CKD causes hypertension.
# High risk groups include those with diabetes, hypertension and family history of kidney disease.
# African Americans, Hispanics, Pacific Islanders, Native Americans and the elderly are at increased risk.
# About 200,000 Americans suffer from kidney failure and need an artificial kidney machine to stay alive.

I would be in that last group.See that insidious word, diabetes, tucked in the high risk groups? Type II Diabetes is my personal nemesis. But I’m not alone. It is the leading precursor to kidney failure accounting nationally for nearly 45 percent of new cases, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

More than 150,000 people in the U.S. are living with kidney failure as a result of diabetes. There were 570 dialysis patients -- as of June 30, 2007 -- living in the 17-county Gazette coverage area, according to the Heartland Kidney Network. Add the Scott County total and the number tops 700.

Diabetes injures the small blood vessels in the body and when the vessels in your kidneys are damaged the kidneys cannot clean your blood properly.

Cut to the chase: Diabetes is the enemy. If you have diabetes or think you have diabetes, or close family members have diabetes, do something about it. Being Cleopatra, queen of denial, is a sure ticket to many, many aches, pains, ills and deteriorating health, a slippery slope that can end in ESRD among other nasty and deadly things. Just ask me.

When the kidneys stop functioning, your body retains more water and salt than it should, which can result in astounding weight gain and ankle and leg swelling, pressure on your heart and more discomfort than you can imagine. You may have protein in your urine. Not a good thing. Also, waste materials – toxins, a literally sickening situation -- will build up in your blood.

Within a few days you will die. Period. The only choice I and those 699 other Eastern Iowans have – a choice more and more are facing each year – is Renal Replacement Therapy. Translate that as some form of dialysis or kidney transplantation.Even though I did my best -- I think (There goes that nagging self-flagellation over self-compliance: “Is this my fault? Did I do THIS to myself?”) – diabetes still fried my insides and killed those dear little isles of Langerhans that manufactured insulin in my pancreas and then, by mid-March, dealt the final death blow to my kidneys.

“Tag,” diabetes screamed, “You’re now dead … or soon could be.” And I would be if it weren’t for three-times weekly 41/2-hour dialysis treatments that clean the excess fluid and waste materials from my blood.

How the ESRD spiraled down, how frightened I was, how sick I was and how dialysis feels and affects me … the personal view … is another story -- or blog fodder (Stayin' alive http://stayinalive.wordpress.com/) – but three months into hemodialysis, I decided I wanted to explore a kidney transplant.

Dialysis is hard on the body. The “routine” questions asked prior to each treatment indicate some of the common problems that dialysis patients live with day in and day out. They sound almost like a Pepto Bismal commercial: “Have you had any swelling or edema? Shortness of breath? Nausea or vomiting? Increased thirst? Loose stools? Any concerns for the doctor?”

For all that I’ve suffered answering yes to several of those questions, I feel at least 75 percent better today than I did a year ago. I owe that – and my life – to the adult umbilical cord that connects me with the beeping, dinging, whirring and chugging computerized artificial kidney at my side 131/2 hours a week.

I am grateful I live in an age that allows me to take advantage of the medical miracle these blood washing machines are, but the restrictions they demand on my life, my energy, my diet, my fluid intake, and frankly the butt-numbing 41/2-hour treatments -- though tolerable considering the alternative – are things I would wish gone from my life. A kidney transplant could grant my wish.

ESRD has put me in the waiting room, literally and figuratively: I wait for my weekly treatments and I will be waiting – I hope – for a kidney transplant once my initial assessment appointment, three to five days of testing beginning Nov. 6 at Mayo Clinics in Rochester, Minn., is completed.

It’s liable to be a long wait, probably multiple years. The latest statistics (Feb. 16, 2007) from the National Institute of Diabetes and Digestive and Kidney Diseases show 74,000 patients on the wait list for a kidney and 2,457 waiting for kidney/pancreas transplants.

I’ll be blogging during assessment testing and what comes next no matter the assessment’s outcome and also about where to find help dealing with the problems kidney and diabetes patients face.

It isn’t a path I’d choose for myself, but destiny says otherwise so I’ll share it. I know it will help me deal and if it helps other kidney patients, family and friends, “It’s all gravy, Baby.”

http://gazetteonline.com/apps/pbcs.dll/article?AID=/20071029/NEWS/71028001/1002/NEWS

PHOTOS: (Lindsay J. Carmack/The Gazette)

1. Sue Hubacek of Cedar Rapids, a RN and CDN (certified dialysis nurse), cleans her hands after connecting Kathy Alter of Cedar Rapids to a dialysis machine at the Council Street Mercy Health Plaza on Tuesday, October 16, 2007.
2. Kathy Alter begins her 41/2-hour dialysis treatment. Televisions are supplied at each treatment station to help patients pass the time.
3. Kathy Alter of Cedar Rapids laughs with Sue Hubacek of Cedar Rapids, an RN and CDN (certified dialysis nurse), during Alter's outpatient dialysis treatment. The red blotch is a disenfectent used to cleanse the site of a catheter in Alter's jugular that provides a connection with the machine that acts as an the artifical kidney.