MY LIFE WITH IMMUNOLOGY AND NEPHROLOGY

MY LIFE WITH IMMUNOLOGY AND NEPHROLOGY

Here soon will be growing number of posts on how thinking like an ecologist and exploring the wilds of a medical research library led me to a French pathologist whose observations and ideas on an autoimmune disease led me to find a radical cure that saved my kidneys and my life…

Today it’s been nearly 20 years since I was given a prognosis of living only 6 months to 2 years. Without finding my French medical researchers spoor in dusty stacks of the Stanford medical library I’d be long and most miserably gone.

Over the course of the months during which I discovered and effected my cure I shared what I was doing on my first web site. That was almost two decades ago and sharing my story on the net resulted in many others finding the path to life as I did. Over time as my health mostly returned and that renewed life offered and demanded of me, the web site became a challenge to maintain and I let it slip away.

I now realize that the information and point of view of my old IgAN site presented has not resurfaced on the Internet since I allowed it to lapse. Without my little effort I am ashamed to think of the numbers of people who may have not found the way I found to save their life.

So here I am again, doing what I can, trying my best. I hope it helps.

My hero

My inspiration, French doctor Berger, he left a very fine trail to follow.

OK what’s nephrology? It is the science of kidneys and I’ve had a particular interest in kidneys as mine tried to stage a coup which I barely managed to survive. But in doing so I discovered a cure for one of the most prevalent causes of kidney failure. It’s a cure that has been and is known but is rarely prescribed.

The reason being that it’s yet another victim of so called skeptic science. For decades skeptic nephrologists have raised arguments incessantly over the use of this incredibly inexpensive and effective treatment. The alternatives are truly onerous treatments that are poor at forestalling years of fantastically expensive and dangerous dialysis and even more expensive organ transplant. Every kidney patient is a gold mine in the practice of medicine, so what’s the harm in strident skepticism.

For me it all began one day back in the early nineties when my wife who worked for a major pharmaceutical company came home with news that the company was providing a great additional perk for some of its people, she was one. They were offering a company paid life insurance policy on spouses and all that was required of the spouse was that they take an insurance medical exam. OK so what’s to lose and we signed up.

A short while later a phone call came and the doctor who would do the physical exam telephoned me to say he could come to my house to do the simple exam which proceeded with no surprises. The doc took away a bunch of standard measurements along with blood and urine samples. More than a month passed and the doctor called back saying the lab had messed up the samples and he wanted to come by for more blood and urine, OK no problemo…

Then another month passed and the same telephone called, once again the lab had “messed up” and soon more blood and urine were taken and sent to the lab. Then another many weeks passed and we’d had no word, my wife checked with her company human resources people who informed her “sorry your husband doesn’t qualify for the company life insurance.” Why of course was our question and the reply was “he didn’t pass the physical.”

What? I was just fine as always and had no symptoms. We asked for clarification and the insurance company refused to talk, they said they had no obligation to inform us of their findings. We protested and many weeks late an envelope arrived at the door from the insurance company. In it was a single sheet of paper that had been copied on a xerox machine. Clearly the page had text on the top two thirds of the page but the insurance company had laid another sheet of paper over that top text part to block it out. All that remained was a table with letter id’s and numbers, it looked like a medical lab report but I had no idea of what the codes and numbers meant.

biopsy tool

The Biopsy “Ice Pick” Tool

I scribbled on the top of the page, “Hey Doc, why was I refused life insurance based on the lab data below.?” I put in in the fax machine and sent it to my doctor at Stanford clinic. Minutes later the phone rang and my doctor was on the line, his words stopped me in my tracks, “I am sending an ambulance and will meet you in the emergency room.” A brief discussion followed and I protested that I felt just fine, he disagreed but allowed that if I would drive over to his clinic and couple miles away he would have his clinic lab run some tests STAT. I did so and as it was I was indeed very very sick and just didn’t know it.

Over weeks to come I was poked and prodded and gave up endless samples of bodily fluids. Then I was asked to agree to a biopsy of my kidneys which I was soon to discover amounted to lying on ones back on an operating table while a team of doctors guided by ultrasound drove what to anyone but a kidney doctor would think was a hollow ice pick into my lower back puncturing my kidney.

The stab resulted in a core sample of my kidney being removed for study by a pathologist. The location of the stab was all draped and prepared for surgery and this is done because some people tend to hemmorhage from such back stabbing wounds to vital organs through which 1/3 of your body’s blood flows. Just lying very still for a few hours would allow the wound time to clot or if not the surgeons could quickly fully sedate me and go in with scalpels to repair the hemmorhage. I was lucky no hemmorhage.

OK so next comes the results. Indeed the diagnosis was dire. I had rapidly progressive IGA Nephropathy. By the time I got this definitive diagnosis from my nephrologist he had already put me on the kidney transplant list, just to get me started in a position on that list which has far more people waiting for a kidney transplant than there are donors available. Then with that bit of news from the specialist I ask uh… before we talk about the transplant treatment tell me about what other treatment options there are and my prognosis.

Oh he says, “I thought you GP might have told you, there are no treatments available, we’ve already got you on blood pressure meds which are sort of controlling your bloodpressure but its bound to keep rising. ” ” But, hey he says, perhaps you might be willing to enroll in our Stanford study of people with rapidly progressive IGA Nephropathy, you are a perfect candidate and we have a hard time finding subjects.”

OK I say the study is great the more data the better, but tell me about my prognosis.

“Oh” he says again, ” I really did think they’d told you, you’ve got a very rapid form of the disease, there are no treatments that appear useful, and so you’ve got 6 months to 2 years.”

It was a moment in my life that I have come to view as a true epiphany. Death was very near and the finest doctors in the world were all in agreement and eager to watch and study me as my life waned. The doctors were neither optimistic about my likelyhood of receiving a transplant in time nor of my chances, for a variety of reasons of having a successful transplant. Further the step wise option dialysis many times each week was surely soon to begin and I was told to plan to get the arterial surgery as soon as possible to build the access graft to my circulatory system that would allow for the inevitable and imminent dialysis.

I walked out of the medical wing of Stanford Hospital across the walk and into the med school library. I told the librarian my tale and he authorized me as a “visiting scholar” to do the “reading in the nephrology research collection” I asked to be permitted to do. I spent a lot, really a lot, of time over the next many weeks buried in the stacks reading everything I could about my disease and nephrology in general.

After a time I found an interesting trail, poorly and obscurely reported on but it looked like real data to me. Being an ecologist my life has been all about living within a field of science where your can never think you will have definitive answers, ecology is all about subtle clues and hints, it like trying to find a rare and shy animal in a uncharted jungle. There is as much instinct as there is knowing. So in this jungle of nephrology and as it turns out immunology I was somehow at home and comfortable with tracking down an elusive thing, it was after all not just any new life-form I was looking for, I was on a trail looking for my very own life.

What I found prowling the jungles and deserts of medical science was that doctors are unbelievably conservative, if they were out in my world in the wilds of forests or deserts or on the open sea they would never in a million years actually take a chance at looking behind where the tracks of a grizzley bear lead or dove under the boat to untangle the rudder after being dogged by sharks for a days because the dang boat was going so slow and would steer easily. Sometimes there is no choice, it is do or do not. A simple choice of seeking life or a finding a miserable death. What I also found was a very promising trail to a cure for more than myself alone.

As my life was so consumed by this medical discovery it’s not surprising that everything else was pushed into the background. A terrible bicycle accident left me waking inside a CAT Scanner and with agonizing  shattered bones. A divorce followed very quickly. It was also a time when the Internet was just beginning to become prominent and useful. The combination of a personal life or death medical quest, a personal nature as a science geek, personal tumult, and the crazy all powerful internet made me into a bit of a strange bird.

I discovered early on that my condition looked to my reading to be an autoimmune disease. This was and is now pretty well accepted in the medical community and some treatments for my condition were to simply bash the daylights out of your immune system. The first choice hammer for this bashing were steroid treatments and when I say bashing I mean it. The side effects of high dose steroids are not at all pretty, one is called “moon face” which describes how ones face balloons into something resembling a man in the moon cartoon. All manner of other physical and worse psychological symptoms are common. Ewww, not a first choice for me.

Then there were other immune suppressing drugs like the ones use in transplant patients to prevent rejection of foreign organs, many with similar side effects to steroids. There then hove into view another problem, very few doctors were willing to prescribe such dire medications.  It was clear with a little research that much of this hesitancy over treating IgAN was due to the high rate of legal claims by patients and families who suffered under such medical treatments the results of which resembled assaults. I was keen to try but my doctors were very much not.

Then one day I finally came to be reading all about the history of immunology and the human immune system. My ecologist mind, typical of all ecologist, is to be a lumper and reach for broad explanations of complex systems as opposed to waiting for precision knowledge of a thousand factors. It seemed to me life on earth, including me, has evolved two immune systems. One is the primitive immune system that is common to us and everything one every other branch of the evolutionary tree of life right down to round worms. This primitive immune system evolved eons ago before worms became man. It did a good job and Nature has a rule in evolution, “if it ain’t broke, don’t fix it.”

The primitive immune system is a tough customer. It began and still lurks in the front end of life, in a worms and in our mouth and nearby. As that is where we take in almost everything into our bodies that is where a simple hammer and anvil approach to dealing with good vs. bad is a good evolutionary invention. Bad things get hit very hard and fast by big mean anti-body molecules, some of those big bad molecules are named IgA. The more modern immune system also makes IgA molecules but as evolution learned sometimes you can do the job with a tiny jewelers hammer instead of a 20 pound sledge hammer and damage fewer good things in the vicinity.

I had found the trail to a French pathologist, a man who studied biopsy samples, and in my case the guy name Berger had named a kidney diseased that was know to French doctors as the kidney disease common to men with frequent sore throats. The disease became known as Berger’s disease but her in North America we call it IgA Nephropathy. Berger had the cure but as one of his colleagues told me the problem was that in the many patients that they treated they found one consistent theme.

The hopelessness and despair of the diagnosis of having the disease was so great that inevitably when the patients had the tonsillectomy treatment and were cured they were so focused on getting away from the dark despair of having the disease that they never wanted to see another doctor again. Thus the required detailed clinical follow-up on the success of the treatment was always found lacking by their critical and skeptical colleagues. The treatment looked simple, an hour in surgery, a week of recovery, and if all went as Berger had observed I might never want to see a Nephrologist ever again.

So tonsillectomy it was…. but wait it was not so easy. First thing that happened was my kidney doctors objected. Too much risk they said, adult tonsillectomy sometime have complications. Then it was “it is not an approved treatment for your disease.” Then arguments about how it could not work, even challenges to me, not a doctor, coming up with this treatment regime, I could not possibly be competent to understand the intricacies of their guild. After much trying I was perfectly shut out of being given a tonsillectomy.

After a time of frustration turning into depression I managed to come up with a path.

So I go to my general practitioner – ” Hey doc I say what can you do for me about snoring.”

“Oh he says let me look in your throat…. You’ve got a nice pair of tonsils.”  Then he says, “I’ll refer you to one of our ENT’s” an Ear, Nose, and Throat specialist.

Some days later I meet the ENT, he says “what’s up,” I tell him about my “snoring problem.”

I don’t tell him that I’d been back to the Stanford med school library and discovered that tonsillectomy is one of the most common elective surgery’s in adult men and is routinely prescribed to treat snoring.

He looks in my throat and says, “OK I see you’ve got big tonsils, we could take them out and it would very likely clear up your snoring.”

“What a great idea I say when can you do it.” It’s a Monday and he walks out to check with his nurse, he comes back in to the exam room and says. “How about this Thursday in our out patient clinic?”

“Great I say, what should I expect?”

“It just takes an hour for the surgery, we’ve learned how to do this so well the new techniques have almost no complications at all. You’ll not be happy for ten days, the recovery is quite painful, but well controlled with pain medication. You need to plan on being out of commission for those full ten days.”

I leave the clinic, wow just a few more days, this feels right.

The surgery takes place. The doctor was spot on, there is a lot of pain and I am not at all able to do much of anything but lie around in great discomfort for ten days.

Six weeks later I go back to Stanford where I have been going for months as one of their volunteer lab rats in the study of people with rapidly progressive IgAN. There I expect my regular full day with IV’s in both arms, being force fed liquids laced with all manner of strange research chemical markers including radioactive tritium. They are forcing my kidneys to make as much pee as possible and taking every drop for study along with plenty of blood. I have perhaps the most intensively studied kidneys on the planet.

Some weeks pass and the word comes to come in again… the tests are run all day. More days pass. Then the call I have been waiting for comes, it seems my blood and urine chemistry is rapidly improving and nearing normal levels. Could it be that I’m cured.

Well here I am many years later, fare  beyond my doctor declared “best by date,” I’ve avoided dialysis, no kidney transplant, none of the moon faced emotional tribulations of steroids…

I’m also willing to confess I’ve not gone back to those doctors so they can track and report on my case in the medical literature. Life has somehow become more precious than I could ever imagine. I need to spend every day with good intentions.

 

 

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