We're not all on vacation

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.

Hi and welcome, MMiller. It wasn’t one of the moderators who would have said “we don’t pee,” because none of our moderators have kidney disease. Are you sure that wasn’t another site? You are right about many of the things you say–kidneys do much more than make urine, vascular problems are a real risk, and many of the folks you say have lost limbs etc. (about half of the people whose kidneys fail these days have diabetes, which is one of the biggest risk factors for limb loss.) Not everyone is traveling. By continuing to share your perspective, you can help make this a website for people like you.

We really haven’t had anyone describe what it feels like to have PKD. Though the PKD Foundation puts out an excellent book that we keep as a reference in our office, it is NOT the same as living it. The plus of PKD is that folks who have it tend to be otherwise healthy (their blood vessels are not affected, unlike folks with diabetes or vasculitis as a cause of kidney disease), and they tend to make their own EPO so they’re not as anemic. The downsides, as you’ve noted, are pain and infection from the cysts, ignorance on the part of medical personnel, and the physical space that the enlarged kidneys take up. There is also the potential for PKD cysts in the liver and brain, and the concern about passing the disease to ones’ children.

Not everyone on this site or doing home HD travels. I know of folks who still just don’t feel comfortable away from home, even with a transportable machine. Some do, though. Some work, and some don’t. (We’d like to see more folks working and a new study finds that those who do are less depressed). Longer and healthier is what we’re going for–the rest is gravy. But please do keep sharing your experiences. We can all learn from them.

I’d say that this site has done an important job well: HDC has let people know that there is a healthier alternative to incenter dialysis. That’s a pretty straight forward message that has the advantage of being absolutely true.

From what I’ve seen there are nothing but sites for people who are having a hard time using dialysis. People who have other significant illnesses in addition to CKD have a tough row to hoe no matter how often they dialyze. That said needing dialysis should not in itself prevent you from living the life you were set to live before your kidney’s stopped working.