When I tell people about my husband's health problems, I notice there seems to be little knowledge of End Stage Renal Disease (
ESRD) or Chronic Kidney Disease (
CKD), aka kidney failure, and dialysis treatments.
(Please keep in mind that I am not a medical professional. My perspective is that of the wife of a man on dialysis for the last 10 years.)
According to the United States Renal Data System (
USRDS),
"1 in 10 American adults, more than 20 million, have some level of CKD". The most common causes of ESRD are diabetes and high blood pressure.
Mark was diagnosed with Type 1 Diabetes just after he turned 9 years old. By the age of 25, when I met him, his kidneys were functioning at about 20-25%. About a year and a half later, he needed to start dialysis.
The main job of the kidneys is to clean wastes and extra fluid from your blood. If your kidneys fail, you will need dialysis or a kidney transplant to live. These are treatments to help replace the job of the kidneys.
Dialysis is the artificial process of getting rid of waste (diffusion) and unwanted water (ultrafiltration) from the blood. This process is naturally done by our kidneys.
People in kidney failure cannot filter toxins from their blood and cannot produce urine. Thus, toxins and fluids build up in the blood stream. This makes one feel run down, sluggish, achy, bloated, and can cause shortness of breath and nausea. Someone whose kidneys have failed will die if they do not receive treatment. ESRD is considered a legal disability.
There are two main types of dialysis -- hemodialysis and peritoneal dialysis. Hemodialysis involves being connected to a machine which removes, cleans and returns the blood. Peritoneal dialysis involves using a sterile solution rich in minerals and glucose inside the abdominal cavity where the peritoneal membrane acts as a filter.
When Mark first needed to start dialysis, he chose peritoneal because it affords much more freedom to the patient since it is done by the patient at home. It is a great option. However, it turned out not to be the best option for Mark. He was not getting adequate treatments and just got sicker and sicker. Unfortunately he did not have a very good doctor at that time and this went on for 4-5 months before it was determined that Mark needed to be on hemodialysis.
Fortunately, it was only about another month before he received a dual kidney and pancreas transplant (Easter Sunday, April 7, 1996) at UCSF. Mark's transplant was successful treatment for six years before the organs rejected. He returned to being insulin dependent and on hemodialysis in February 2002. He is on the transplant list at UW, however his first transplant caused his body to create antibodies to the majority of the population, making him a difficult match. Also, his heart problems have forced UW to have Mark bounce back and forth from active to inactive several times. Your heart needs to be strong enough for the transplant surgery.
Dialysis is essentially a form of life support. Many people have chosen not to receive dialysis treatments and let their condition take its natural course, meaning death. Further, many people skip treatments regularly. Mark and I cannot understand why anyone would want to skip dialysis and make themselves feel crappy. Dialysis doesn't replace normal kidney function as it is, and the constant up and down imbalance of electrolytes causes complications (such as Mark's heart problems). The need for dialysis is not something to take lightly. Mark has NEVER skipped a regular treatment at his clinic, unless he was in the hospital, and then they dialyze him there.
Being on in-center hemodialysis is equivalent to a part-time job. The usual schedule is three times a week for about four hours, which equals twelve hours every week. Mark does this, plus an extra treatment on Saturdays, equaling 16 hours a week.
Several years ago I read an essay a dialysis social worker wrote. She decided that in order to better understand the patients she needed to better understand what a dialysis treatment is like. With the help of the techs and nurses in the clinic, she performed an experiment on herself. She sat in a dialysis chair for four hours, with the lines taped to her arm. She simulated the fluid load by having bags of saline placed all over her body, and then slowly removed as her "treatment" progressed. She thought she could read a book, but her tethered arm made that difficult. She closed her eyes and tried to rest, but the beeping alarms of the machines kept waking her up. All in all it was a very frustrating experience and she came away with a new-found respect for dialysis patients.
If you've managed to get through this entire post, thank you. Now you know more about what dialysis is like. Knowledge is a good thing.
I can't close without also pleading with you to become a
registered organ donor. I believe it is our moral obligation to let doctors have whatever parts of our bodies they can use to help others after we die. Do you know they can use everything from skin to organs to the corneas of the eyes? There are so many people waiting for organs, my husband being only one. You can also donate parts of your body while you're still alive, such as blood, bone marrow, a kidney and part of your liver. Imagine being able to save a life! The key is to make the decision, and then tell your loved ones about your decision. They need to know because they will have to make the final decision for you.
OK, off my soapbox! Again, I thank you for reading this.
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