Now What? 

Wow! It’s the last month of 2019 already. You may have noticed there was no blog post last week. That’s because I was unexpectedly hospitalized with just my iPhone on me and poor internet at the hospital not once, but twice. But I’m back in the office now.

Today is Dana’s turn to have his request filled. Although, I do wish the reader who graciously agreed to wait until after I’d recovered from major surgery to have her questions answered would contact me again. With so many people at my computer while I was hospitalized, her questions have been, er, mislaid.

Okay, Dana, back to you. Uh-oh, your messages have seemed to disappear, too. Well, I guess that’s the last time I allow anyone to use my computer. I do apologize. Please resend your questions.

Mind you all, I am not a doctor. I’m just a writer who’s taught research writing and been a Chronic Kidney Disease, stage 3 patient for 11 years. Anything I suggest – or that anyone else suggests, for that matter – should be checked with your nephrologist before you act on it

Hmmm, we have to hold off on both questions. Now what? I know. Let’s look at a rare kidney disease. Are you game? Well, will you look at that? I’ve already blogged about some of them on this list by the American Kidney Fund at https://www.kidneyfund.org/kidney-disease/other-kidney-conditions/rare-diseases/  Use the topic drop down on the right side of the blog if you’re seeking info on one of them or let me know if you’d like information about one I haven’t yet written about. Use comment on the blog so it doesn’t get lost.

Minimal change disease?  Whatever could that be? And why is it labeled in plain, laymen English rather than medical terms that we’d have to look up? Let’s find out.

According to the National Kidney Fund at https://www.kidney.org/atoz/content/minimal-change-disease,

“Many diseases can affect your kidney function by attacking and damaging the glomeruli, the tiny filtering units inside your kidney where blood is cleaned. The conditions that affect your glomeruli are called glomerular diseases. One of these conditions is minimal change disease (MCD). Minimal change disease is a disorder where there is damage to your glomeruli. The disease gets its name because the damage cannot be seen under a regular microscope. It can only be seen under a very powerful microscope called an electron microscope. Minimal change disease is the most common cause of nephrotic syndrome in children. It is also seen in adults with nephrotic syndrome, but is less common. Those with MCD experience the signs and symptoms of nephrotic syndrome much quicker than they would with other glomerular diseases.”

This is so logical it makes me wonder why the rest of medicine isn’t. I was referring to the part about the electron microscope. Let’s slow down a bit and take a look at “nephrotic syndrome” to ensure we fully understand what this disease is about.

The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/nephrotic-syndrome/symptoms-causes/syc-20375608 tells us,

“Nephrotic syndrome is a kidney disorder that causes your body to excrete too much protein in your urine.

Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. Nephrotic syndrome causes swelling (edema), particularly in your feet and ankles, and increases the risk of other health problems.”

Got it? Okay, then back to minimal change disease. How, in heaven’s name, do you get it? Hmmm, after surfing the internet for a while, it’s become clear the medical community doesn’t yet know the cause of minimal change disease, although the following may be involved:

“The cause is unknown, but the disease may occur after or be related to:

  • Allergic reactions
  • Use of NSAIDs
  • Tumors
  • Vaccinations (flu and pneumococcal, though rare)
  • Viral infections”

Thank you MedlinePlus (part of the U.S. National Library of Medicine, which is part of the National Institutes of Health) at https://medlineplus.gov/ency/article/000496.htm.

All right then, maybe we could move on to the symptoms. This is clearly one of those times I wish I could understand medicalese. The best I could figure out is that, while kidney function remains normal, minimal change disease leads you right into nephrotic syndrome. That is a conglomeration of symptoms, as explained by Merck Manual Consumer Version at https://www.merckmanuals.com/home/kidney-and-urinary-tract-disorders/kidney-filtering-disorders/nephrotic-syndrome?query=Minimal%20Change%20Disease#v761896:

“Early symptoms include

  • Loss of appetite
  • A general feeling of illness (malaise)
  • Puffy eyelids and tissue swelling (edema) due to excess sodium and water retention
  • Abdominal pain
  • Frothy urine

The abdomen may be swollen because of a large accumulation of fluid in the abdominal cavity (ascites). Shortness of breath may develop because fluid accumulates in the space surrounding the lungs (pleural effusion). Other symptoms may include swelling of the labia in women and, in men, the scrotum. Most often, the fluid that causes tissue swelling is affected by gravity and therefore moves around. During the night, fluid accumulates in the upper parts of the body, such as the eyelids. During the day, when the person is sitting or standing, fluid accumulates in the lower parts of the body, such as the ankles. Swelling may hide the muscle wasting that is progressing at the same time.

In children, blood pressure is generally low, and blood pressure may fall when the child stands up (orthostatic or postural hypotension). Shock occasionally develops. Adults may have low, normal, or high blood pressure.

Urine production may decrease, and kidney failure (loss of most kidney function) may develop if the leakage of fluid from blood vessels into tissues depletes the liquid component of blood and the blood supply to the kidneys is diminished. Occasionally, kidney failure with low urine output occurs suddenly.

Nutritional deficiencies may result because nutrients are excreted in the urine. In children, growth may be stunted. Calcium may be lost from bones, and people may have a vitamin D deficiency, leading to osteoporosis. The hair and nails may become brittle, and some hair may fall out. Horizontal white lines may develop in fingernail beds for unknown reasons.

The membrane that lines the abdominal cavity and abdominal organs (peritoneum) may become inflamed and infected. Opportunistic infections—infections caused by normally harmless bacteria—are common. The higher likelihood of infection is thought to occur because the antibodies that normally combat infections are excreted in the urine or not produced in normal amounts. The tendency for blood clotting (thrombosis) increases, particularly inside the main veins draining blood from the kidneys. Less commonly, the blood may not clot when clotting is needed, generally leading to excessive bleeding. High blood pressure accompanied by complications affecting the heart and brain is most likely to occur in people who have diabetes or systemic lupus erythematosus.”

So, while the name of the disease is written in plain language, it’s clear this is a more complicated rare kidney disease than that would suggest.

Until next week,

Keep living your life!