In reading the posts on this site, it seems that everyone is in good health and flying around the globe on vacations. The NxStage newsletters also paint a picture of ESRD patients as people who are always taking ocean cruises. The poster boys for kidney disease are millionaires such as NBA star Alonzo Mourning and TV most George Lopez, who had relatives who were transplant donors.
A few years ago, one of the moderators on this site actually stated that the only difference between ESRD patients and healthy people is that “we don’t pee.”
I have had ESRD/PKD for nine years and have done HHD for nearly eight years. I have spent a lot of time in clinics and hospitals. Generally, I have found that ESRD patients are a sick bunch. They seem to have multiple medical problems and most of them aren’t wealthy – they’re on Social Security Disability. Some are diabetic. Some have lost limbs. Some use canes, walkers, and wheelchairs. Others have vision problems. Thyroid and parathyroid problems are common. All have weakened immune systems which cause a host of medical woes, including infections.
I know that HHD patients are a bit healthier than their counterparts in clinics, but they are still people with a terminal illness. If dialysis is stopped, they would die in 7-10 days. They suffer many ailments as a result of dialysis – including insomnia, stiff joints, soreness, lethargy, infections, etc. They take a laundry-list of expensive medications. The kidneys do more than process urine. They play a major role in the immune system and the creation of red-blood cells and iron. This is why many ESRD patients have to take Epogen and Venofer. The lack of urination is really a minor issue.
Nurses in clinics and other medical personnel often are ignorant of the differences which exist among people with various types of kidney disease, particularly PKD. I once had an emergency-room doctor send me home with a 103-degree fever and a prescription for Tylenol. He said I had a sore throat and he didn’t believe kidney cysts could be infected. I later spent nine days in his hospital while a team of doctors tried to cure my infection.
The miraculous work performed by family members and caregivers to those with ESRD is a topic for another post.
Even frequent home dialysis doesn’t completely remove the damage ESRD causes to the vascular system. Over time, the yo-yo effect of putting quarts of extra fluid in the arteries and removing the fluid in a few hours takes its toll on the heart and other organs, even if you dialyze daily. I was one of the first 50 patients in the world to do self-administered HHD, so I am a believer. But even daily HHD is not perfect.
People with Polycystic Kidney Disease (PKD) have even tougher battles. Many of these patients have had massive strokes due to their disease. The females often are infertile. Their kidneys, and usually other organs, are filled with cysts, which are easily infected and require regular hospitalization. The kidneys can grow to be 15 pounds or more, causing the abdomen to protrude, resembling a pregnancy. This causes
stress on the spine, legs, hips, and feet. Eventually, the cystic kidneys have to be removed – a bilaterial nephrectomy. This is a high-risk operation as the patient can bleed to death due to pressure on the arteries following surgery. If the kidneys aren’t removed, the patient probably can’t get a transplant (due to limited space) and can die due to infections and other complications.
Home hemodialysis lets us live longer, healthier lives. But I think this website is a bit skewed when it comes to the realities of ESRD. We aren’t all flying around the globe on vacations. Many of us live very tough lives, day to day. I am just glad to wake up in the morning. I wish there was a website for people like me.