Speaking Up About a Silent Killer
Kidney Disease Poses a Big Challenge, but Dialysis Gives Me Hope for the Future
By Frank Sietzen Jr.
Special to The Washington Post
Tuesday, July 22, 2008; Page HE03
[SIZE=3]My response to Frank Sietzen’s article
Dialysis is the true gift of life
I know what Frank Sietzen Jr. is going through. It was only seven years ago that I lost the full use of my kidneys. At age 36, I was working full time as an environmental consultant, finishing my Ph.D., and raising my one year old son along with my wife of thirteen years. The life that I had known and worked so hard to create - disintegrated. The many fears and concerns described by Mr. Sietzen became my reality. I too thought that, “dialysis was a drag.” But, fast forward seven years and I now find myself in a very different place than what Mr. Sietzen describes.
After two failed kidney transplants, the first from my wife, and years of experiencing every form of dialysis available, I now find myself living a very full life. It is different than what I had earlier where I thrived on juggling numerous responsibilities with a cavalier just in time attitude. But in new ways it is fulfilling.
Since the onset of my disease, I have learned that a kidney transplant is not necessarily “the ultimate solution for failed kidneys,” as described by Mr. Sietzen. I and thousands of others, for numerous reasons, will rely on dialysis for the rest of my life, making dialysis the true gift of life. As Mr. Sietzen describes, without dialysis for a few weeks I would expire. But because of dialysis, I have gained the rest of my life. A viable kidney transplant may not be in my future, but I sure am not just hanging out waiting for the “Grim Reaper,” as Mr. Sietzen put it. The time that I spend on dialysis, which is significant, is not time lost but ultimately time gained.
While on peritoneal dialysis, a type of dialysis where liquid is placed in the abdomen through a catheter to dwell, I adopted my daughter as a newborn baby. Over 150,000 patients undergo this method of dialysis which they can do in their homes, in their cars or wherever life takes them. While in the peritoneal cavity which lies in the abdomen, the liquid draws salts, fluid and waste products across the peritoneum membrane. This mixture of dialysis liquid, water and waste products is then emptied from the abdomen through the same catheter. People who undergo this type of dialysis spend about twenty minutes four times a day doing this. Some also do it overnight using a machine to gently pump the dialysate in and out of the abdomen. This type of dialysis can certainly help one to lead a very active and independent lifestyle. For me though, after a while it was not effective and I returned to in center hemodialysis.
While undergoing in center hemodialysis I read about a form of short term daily hemodialysis in an issue of Nephrology News and Issues that could be done at home. With a then six year old son and two year old daughter I knew that I had to find out more because like Mr. Sietzen, I found very little to like at hemodialysis clinics. I yearned to spend more time with my children. That was over two years ago.
The biggest hurdle I faced going from in center hemodialysis to home based short term hemodialysis was putting those 15-gauge needles into my own arm. I knew that was my ticket home, cannulating myself. It took a lot of courage, but I just envisioned the smiling brown eyes of my two young ones, and from somewhere deep inside found the ability to press those sharp pieces of metal into me. From that moment on it was a piece of cake to learn to do home hemodialysis. That single act changed my world again, taking me from dependent forlorn patient to being an independent take-life-by-the-horns kind of guy. Close to the guy I used to be.
Each day, six days a week, I find time in my busy schedule to hook myself up to my little eighty pound dialysis machine. I run the machine for about 2.5 hours. Sometimes I leave the machine in my den where I can post to my Blog, [I]Tasty Kidney Pie /I, read or play computer games with my son or daughter. Other times, I roll the machine out into our living room to have movie night with my family or to chat with friends or family who visit. The time commitment may be a bit more than three times a week in center dialysis, but the energy that I receive from doing dialysis more frequently similarly to how kidneys work (which is all the time)- is extraordinary. Additionally, the diet that Mr. Sietzen laments virtually disappears as do the fluid restrictions.
The piece de resistance of using this daily dialysis machine is that I can put it in our car or pack it on a plane and take it with me. No more having to leave the Magic Kingdom to go to a dialysis center for four hours in the middle of the day. Instead, I can dialyze in the comfort of my room at the Wilderness Resort at the end of the day or whenever it fits my family’s schedule. My family and I just got back from staying in a cabin in northern Michigan for week. After playing on Torch Lake all day, when the campfire was done, I’d hook up in my bedroom for a couple of hours and be ready for the next day of fun.
Research is now showing that the survival of patients on short daily hemodialysis may be 2–3 times better than that of in center three times weekly age-matched hemodialysis patients (http://ndt.oxfordjournals.org/cgi/content/abstract/gfn210). That same study found that survival of patients dialyzing at home was similar to that of age-matched recipients of deceased donor kidney transplants. So, in addition to spending time with my family, having more energy, taking less medicine, and eating and drinking more freely, I may live longer. That is what I call dialyzing for the prize! Life.
I still do not have the energy that I need to get back my hectic just in time lifestyle, but I have enough energy to lead a very fruitful and thankful life with my family and friends. Over the past seven years I and a number of friends have raised over $50,000 for the National Kidney Foundation of Michigan. I am my son’s Cub Scout Den Leader. I am my daughter’s primary caregiver while my wife works full time. I volunteer to help others who struggle with kidney disease and dialysis issues. I make jewelry and write.
With the passage of time I find that I can’t agree with Mr. Sietzen’s conclusion that “life with kidney disease isn’t easy.” For me, my dialysis machine is nothing more than a glorified toilet. I spend as much time thinking about it as I would a urinal when I use to make urine. Life with kidney disease is just my life. It is neither hard nor easy, rather it is just the life I have to live. Though, I will agree with Mr. Sietzen that, “life is well worth living.”
To learn more about the various modes of home dialyis I urge you to check out http://www.homedialysis.org/.