written on July 22, 2014

My wife has been reading these blog entries for me, to make sure I have a consistent theme that I’m following and not straying too far from. She suggested I write one about my initial diagnosis and how I got this kidney disease that destroyed my kidneys. Brilliant idea, I thought, and told her so. I hadn’t really thought about relaying the past, but sometimes it helps to know how you got somewhere when you examine where you’ve been.

My problems with my kidneys started in January 1995. I don’t know why I remember that. It was the second week of the spring semester of my junior year in college, probably around Jan 18 or so. I woke up really sick one morning – so sick, my then-girlfriend had to take me to the student health center on campus (I didn’t have health insurance at the time, so the health center was my only option). I felt horrible – like a really nasty flu had taken over while I was sleeping. My fever was peaking at around 105, so I knew something was wrong. (I don’t remember if I started feeling sick the night before, but I’m sure I did.)

At the health center, the first thing they wanted to do was take my blood; I remember they had me sitting in the chair and I kept telling them they couldn’t draw my blood while I was sitting because I would faint and they thought I was kidding. So they stuck the needle in my arm, I fainted, slid through the opening under the arm rest and ended up on the floor, with the needle sticking out of arm. That was fun (it also caused me to get light-headed and faint anytime anyone drew my blood for the next seven years).

Once the results came back, they noticed I had a kidney infection. Caused by at least one kidney stone. The stone itself was so small, cat scans and ultrasounds couldn’t see it. But it was there. For the next three years, it would cause me great pain anytime I had to go to the bathroom. Turns out it had gotten stuck in my ureter, just outside my bladder. And when I say stuck, I mean stuck; it literally jammed itself into my ureter wall. I needed surgery to remove it, which happened in October of 1998. Let me tell you how not fun it is to have a kidney stone surgically removed – they put you under general anesthesia because they go in through the only opening to the bladder you have beneath the waist. The surgery only took like 15 minutes – when I woke up I had metal strings hanging out of me that sent uncomfortable spasms into my lower abdomen anytime I touched them. The strings were attached to a stint that was in my ureter to prevent any scar tissue from forming.

The strings had to stay in for 3 days, after which I went back to the doctor’s office. He had me lower my pants and he grabbed the strings and pulled them out – no anesthetic, no warning, he just tugged and out they came (now, the anticipation of that moment was far scarier than the reality – it did not hurt to have them pulled out, but boy did it freak me out).

Turns out the stint they left inside had created a blockage in the ureter and for the next ten days my left ureter wouldn’t allow any urine to pass into the bladder. My kidney was getting backed up and it hurt like nothing I’ve ever felt. Everyone says the pain from a kidney stone is bad – let me tell you how painful it is when the urine backs up into your kidney while it’s trying to make more. Really not fun.

Finally, on the tenth day, when I went to my doctor for the third or fourth time, the pressure and pain I was feeling was so intense. He wanted a urine sample, so I went into the bathroom and I felt something give and all of a sudden the pressure and pain went away and I pee-ed an enormous amount of “stuff” into the toilet. The relief I felt was amazing! That was the end of the pain!

After that I was pretty much fine for about five years. I would get a lot of infections in those five years – sinus infections, chest infections, prostate infections. But other than getting sick every couple of months, I was fine.

In July of 2003, I flew over to the Czech Republic to spend some time with a woman I was dating who was working on the movie “Hellboy” over there. I was crazy excited – my first time outside the United States (except for my college senior year trip to Vancouver) and I was visiting a film set! Awesome!

But not so much in the end. On the way over there, I sat in my seat on the airplane and never moved – not once. Never got up to use the bathroom, never walked the aisles. I made it to Prague and felt great for the first 9 days. The night of the 9th day, I started feeling like I was coming down with the flu. The next morning, at like 2 am Prague time, I called my doctor’s office and said I felt horrible. My fever was high, 103 or 104 and I had to visit some foreign medical center where they spoke Czech, German, French and English. They sent me to Charles University, where only one doctor spoke English, and not well (everyone says that everyone in Europe speaks English just fine – this is not true, at least in my experience in Prague it was not. There really are people over there who do not speak English at all). He told me I had a urinary tract infection, then he gave me an antibiotic and sent me on my way. But I had to stay in Prague for 3 more days before he’d let me fly home.

Once home, I went back to my urologist, who said it was a prostate infection instead of a urinary tract infection. He gave me a different antibiotic and sent me on my way. But the infection moved into my lungs and for the next month I had a lot of lung-related problems. My general practitioner got worried – he saw the lung infection, I had blood in my urine (I’ve had blood in my urine since I can remember – it’s microscopic, so I never see it, but it is a condition called hematuria). I also had protein in my urine, which is not good. I had a few other symptoms and he got freaked out, telling me he thought I had lupus.

Well that was not good news. And I didn’t have health insurance at the time, so I had to play the game for over a year of trying to establish a new doctor and new medical history so I could get approved for health insurance and not be disallowed coverage for lupus or lupus-related problems (that wonderful pre-existing condition problem). After almost 18 months of playing the game, I finally got health insurance coverage, then scheduled a kidney biopsy in February of 2005 that confirmed I did not have lupus (whew!), but I did have a condition called IgA nephropathy (read about it here: http://kidney.niddk.nih.gov/KUDiseases/pubs/iganephropathy/index.aspx).

So I thought I dodged a huge bullet (lupus is a debilitating autoimmune disease – your immune system essentially starts attacking your muscles and organs). My nephrologist (kidney doctor) at the time figured if I would lose my kidneys, it would be several years (more than 20) before that happened, because most people diagnosed with IgA don’t lose their kidneys. (in case you didn't click the link above, IgA nephropathy essentially causes your kidneys to allow protein molecules from your blood to pass through the kidney filters, which is bad. The protein molecules are much larger than the filters, so they damage the filter on the way through and the damage eventually becomes scar tissue, which eventually kills that part of your kidney. For most people with nephropathy the damage is very slow so the loss of kidney function takes many years).

For some unknown reason, in 2010, the nephropathy took a turn for the worse and got very aggressive. I flew to North Carolina for my sister’s college graduation and got off the plane with some serious edema (water retention). My legs, starting from knees down to my feet, were just filled with fluid. It looked like the bottom of my legs were solid poles – no delineation between the width of my kneecaps all the way down to my feet. It didn’t hurt, but putting my shoes on was very difficult. It persisted until I got back to LA, then it naturally went away. Unfortunately, that was when my creatine level jumped from 1.8 to almost 3.

Creatinine is a waste product that your kidneys get rid of (normal levels are below 1.5). I’ve been told by a few doctors that the jump from 1 to 2 means you’ve lost more than half of your kidney function, anything over 2 is just degrees of function being lost. So in the span of that weekend, I lost a huge chunk of kidney function. Still don’t know why. My nephrologist scheduled another kidney biopsy for July and we confirmed that I only had about 35% of my kidney function left.

A year later, the spring of 2011, I joined a boot camp fitness routine (6 am, five days a week). I started to look good, feel good, and then after 7 weeks, the edema returned. And my creatinine went up again. Still not sure why – my best guess is I was burning through so much protein that my body didn’t know what to do with it, so it dumped it into my kidneys, which had so much damage already that they just let the protein molecules pass through (not good). So I took another hit that spring.

That fall (fall of 2011), my doctor stumbled upon an old drug that a company was trying to market as an alternative to prednisone in treating kidney disorders. A drug called Acthar, which is really just ACTH, a hormone that the human body makes naturally. Unfortunately, after using the drug for four months, my edema returned and we had to stop the treatment.

Things seemed fine (one thing to know about chronic kidney disease – you don’t show any symptoms, except for foam in the urine, until it’s too late). Then in May of 2013, after a routine blood and urine test, my doctor got panicked because my creatinine was up to 6 and my GFR (glomerular filtration rate – the percentage of kidney function left in your kidneys) was 11. Anything less than a GFR of 15 means you’re in End-Stage Renal Disease, which means your kidneys will fail soon.

My doctor sent me to the Transplant Center at Cedars-Sinai, because he had nothing left to do for me. The doctor I met with there said I should have another kidney biopsy (my third) and he discovered that I had more kidney function than the GFR was showing, but it was still really low (around 20%). He said that he couldn’t do anything for me – the disease had progressed too far. The only options were to put me on transplant medications which would suppress my immune system and thereby slow down the disease progression or find a living donor and wait until my kidneys failed.

I decided to look for a donor (thankfully, my wife is able and willing!) and we’ve been waiting. And then, in May of this year, my kidneys failed. Now I’m here, sitting in dialysis writing about how I got here.

It’s been a long process of waiting for my kidneys to fail. I still wonder how it happened. Modern medicine has no idea what causes IgA, they have no cure or even treatment that is successful (the best treatment options they have are to shut down your immune system to try and prevent progression of the disease – but they’re not 100% certain it is an auto-immune disorder, it just presents itself that way.)

One of the first questions everyone asks is “do I have a history of kidney problems?” And the answer is no. I don’t know if there is a genetic component to this disease or not, but I’m hoping not. My family doesn’t have a history of kidney disease that I know if. But if there is a genetic component, that would mean my kids have a good chance of getting it and that’s really something I hope never happens.

There’s still a possibility of recurrence of the disease after I get a new kidney. According to some research I’ve done online, since my donor is not blood-related (heck, she has a different blood type altogether), the chances of recurrence are very small. Which is good – hopefully my immune system will never recognize her kidney tissue as kidney tissue and therefore won’t try to attack it with nephropathy. Although the tell-tale sign of nephropathy is protein in the urine, I wonder, if I still have some of my kidneys left after the transplant, will I still get protein in my urine? And if I do, will that somehow negatively affect the new kidney?

That’s the other thing to know about a kidney transplant – they leave the old kidneys in you and just wait for them to shrivel up and die. But what if, after the transplant, my old kidneys manage to hang on for a few more years? Will that cause any problems?

I definitely don’t know the answers to those questions. I’m pretty sure my doctors don’t either. There’s a lot of unknowns in this whole dilemma – hopefully if I can find the answers, it won’t be a detriment to my health.