Kidney Stones and Lithotripsy: More Lessons Learned about Healthcare
Posted Aug 29 2010 12:35pm
Yes, there will be blood!
You know, the older I get the more I am inclined to believe that heart disease is just another symptom of a more systemic problem - getting old! Since I became consumed by heart disease I have gone down the rabitt-hole of thyroid function (Hashimoto's in my case) and diabetes (currently prediabetic with Impaired Glucose Tolerance and an HbA1c of 5.9).
So now what? KIDNEY STONES!
Ole, HeartHawk finally went in for Extracorporeal Shock Wave Lithotripsy (ESWL) for a collection of stones in my right kidney that I have known about for over two years. A visit to the emergency room with nasty renal pain several weeks earlier prompted me to visit my urologist to reschedule the lithotripsy I postponed the previous year.
I want to take this opporunity provide a series of bullet-point observations about my personal experience with kidney stones and ESWL and use them to further illustrate even bigger observations about the shortcomings of traditional healthcare (just do what the doctor says) and the need for everyone to practice what I call "Informed Self-directed Healthcare" (ask many questions, do your research, get many opinions, don't blindly trust any single doctor) no matter what condition you are treating!
1. I discovered my kidney stones quite by accident during an ultrasound for a still undiagnosed (despite repeated scans and tubes shoved up and down both "ends") bouts with episodic and debilitating stomach pain. The test showed a 16mm stone.
2. After an ER visit for another bout with whatever was ailing my stomach, a CAT scan confirmed the stone but put it at 8mm. By the way the gastroenterologists finally decided that what I had was Cyclic Vomiting Syndrome which is thought to be a "migraine" of the stomach. The pattern of attacks, symptoms (no vomiting actually) and fact that I had a history of migraines all contributed to the diagnosis - although they don't REALLY know but I haven't had an attack in over a year.
3. I saw a urologist who wanted to perform a KUB (Kidney, Ureter, Bladder x-ray) of the stones. When I asked why - noting I have a CAT scan of the damn thing he suggested the KUB was a "better modality" for "seeing" the stones. After the KUB this doc wanted to do a percutanous nephrolithotomy (PCNL) where they cut into you and extract the stone(s) with a scope. This is an invasive 1-2 day surgical procedure which requires a stent in your incision to drain the kidney for 24 hours - hence the hospital stay. This same doc then wanted to do a CAT scan before the procedure. When I asked why he said because it provided better information about the stones than a KUB - ahhh, wait a minute - I thought you said ...! I dropped this doc like a hot rock!
4. I saw another urologist who suggested ESWL so I decided to research lithotriptors. I chose the Storz Modulith SLX based on a combination of treatment efficiency and ability to pulverize stones. Here is a link to one of the studies I reviewed. You CAN dictate which machine will be used by your doc. I actually had it written into the waiver I signed at the hospital. Now, it does complicate scheduling because the machine needs to be available (more on that later).
5. After procrastinating for a year I ended up at the ER with renal colic (pain) that is typical of the stones I KNEW I had. Right lower back pain that was bad but not the "child birth like" torment I had heard - but still bad enough to take the morphine they offered! At the ER a nurse showed up to take me for a CAT scan. I refused. Wouldn't a much lower radiation dose KUB confirm things? Hell, one urologist told me (at one point) it was superior - and certainly cheaper (another example of why healthcare is so expensive)! I actually sat in the imaging room until the attending physician came in. After a brief discussion she agreed with me!
6. I scheduled a followup with my new urologist who says the stone "cluster" now looks much smaller (possibly to small for lithoptripsy - or GONE) and wants to do a repeat KUB. Right now I feel like an x-ray pin-cushion. I suggest we first verify it with ultrasound (no radiation) and if we find something then do a KUB. He agrees. See a pattern here? Seems like docs are handing out radiation like candy. Why?
7. The first ultrasound tech (who was a trainee) had equivocal findings so the test was repeated on the spot by a more experienced tech who found the stones so I had the pre-procedure KUB (this would be the fourth).
8. The doc says the stone "cluster" is now only 4-5mm and is marginal but suggests going ahead with the ESWL to avoid future problems and I agree. I go several rounds with the schedulers to get a Storz SLX-F2 lithotripter in a hospital setting as the procedure is done under general anethesia (I won't settle for receiving general anesthesia anywhere but in a full hospital).
9. I get to the hospital and everything goes smoothly until a nurse shows up to take me for - ANOTHER KUB! Of course, I refuse (I always like the look of bewilderment on the faces of medical staffs when I do this - they are practically speechless). I just had one a week ago! So they call the urologist who agrees to bring the last one to the hospital. After a little prodding of the staff it became clear the final KUB was ordered simply for the convenience of the urologist! Let's see, I get another blast of x-rays so the doc can squeeze in another latte? Bite me!
10. Did I mention an ESWL is done under flouroscopy (x-ray) so they can aim the lithotripter? I was not amused when the lithotripter tech could not tell me what my radation exposure would be (mSV) but noted that my doc put on a lead flak jacket as I was dozing off.
11. The rest of the procedure went well with little pain but I am starting to get concerned about "peeing cherry Kool-Aid" (blood in the urine) for two and one-half days post procedure. I heard it can last a week but usually subsides in two days. The doc called and said I'd received the the max number of shocks (about 3000) so I am certain my guts got a little "tumbled!" Still, somehow I doubt I will ever get used to red urine!
12. Of course, I also have to strain my bloody urine for three days. What fun! No rocks yet which may mean the stones got completely pulverized but it could also mean they're stuck!
13. Now, here is the kicker that REALLY pisses me off. I am doing some post-op research about how long to expect blood in the urine and come across another study that suggests ESWL greatly increases the risks of diabetes and high blood pressure. WHY IN GOD'S NAME WAS THIS NOT DISCUSSED WITH ME PRIOR TO THE PROCEDURE? This is unconscionable! I am prediabetic with heart disease! Ya think this might be pertinent to my decision? To be fair there are competing studies that found no such association but that is beside the point. It should still be disclosed!
14. So here I sit, three days later, peeing red into a bucket, and wondering whether the "benign" procedure I just had is going to raise my blood pressure and accelerate my diabetes years down the road. Sometimes I wonder - maybe ignorance is bliss - NAAAHHH!