Sunday, August 29, 2010

Kidney Stones and Lithotripsy: More Lessons Learned about Healthcare

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!

Looking out for your health (and mine),


HeartHawk

82 comments:

Anonymous said...

Interesting account of your ordeal.

Have you read the reader discussions a while back on Peter's Hyperlipid blog about a theory concerning kidney stone symptoms and low carb/low insulinogenic diets? The theory is that many on the SAD/western industrial diets are walking around blissfully unaware they have huge asymptomatic kidney stones. For one reason or another, a LC/Low Insulinogenic diet is commenced and maintained for a while, and then, wham - kidney stone pain starts. Uh, oh, LC/low insulinogenic diets cause kidney stones. Or does it?

The theory is that the improvements from the LC/low insulinogenic diet allow the kidney stone to start to dissolve, eventually becoming small enough to move and cause pain as it tries to pass into the ureter. Your stone certainly was shrinking, I noted. Reversing Heart Disease also means reversing mineralization of soft tissue, too.

What do you think?

http://high-fat-nutrition.blogspot.com/search/label/Renal%20stones%20and%20the%20OD

http://localnourishment.com/2010/03/05/kidney-stones-juice-sugar-and-brain/

HeartHawk said...

Anon:

Thanks for the links. I think these are intriguing theories that bear more investigation. They seem to make sense and I'll keep them on my radar. Feel free to chime in anytime!

HeartHawk

Anonymous said...

Have you been tested for celiac (because of the Hashi's and how autoimmune conditions cluster?) I doubt you eat any gluten, but that isn't quite the same as being gluten free, supplements in particular.

Do you avoid iodine because of the Hashi's, per Dr. K's advice?
http://drknews.com/

Just curious. quite new to this topic...

Ed Terry said...

I've refused CT scans in the past because the doctor could not provide a compelling case for one. Like you, I find that doctors are surprised as hell when a patient starts asking questions demonstrating they did their homework.

I recently has what I thought was my second EBCT recently. After the procedure I casually asked the technician how many other EBCTs were in the Washington, DC metropolitan area. He stated that he didn't know of any! I then verified that the scans I had received were multi-slice detectors CTs and he said yes. EBCTs have 1/10 the radiation exposure that Multislice Detectors do. I was furious. He said that whenever the receive an order for EBCT, they just perform the MS CT scan instead and don't tell anybody- neither the patient or the doctor.

A year ago I argured with my old cardiologist that I wanted to stick with niacin and not take a statin. He said that statins were superior at lowering LDL. I agreed but pointed out that there's never been a valid study showing the LDL reduction helped anyone. He grudgingly agreed and admitted that the useful properties of statins were probably due to their pleiotropic effects. He was also unimpressed that I had managed to double my HDL through niacin and low-carb eating.

My second recent CT scan for calcium scoring was inconclusive because of the limitations of muti-slice detector technology. Had I known that the scan were not EBCT, I never would have had a second one.

I'm surprised I don't have kidney stones as a result of eating all the healthy fruit for all those years. It's been demonstrated that fructose metabolism increases the catabolism of Adenosine diphosphate, leading to increased purine excretion. That also explains why protein restriction has little or no effect on kidney stones.

Thanks for sharing your experience with your doctors. I reinforces my belief that I'm the one who loses most when casual decisions are made about my healthcare.

HeartHawk said...

Anon:

I have tested negative for celiac but do refrain from all products that contain gluten as part of a low-carb diet.

I do get about 450mcg of iodine a day from kelp and in my case it seems to help. But, keep in mind we are ALL different. I do not dispute Dr. K's observations and they make sense. Unfortunately, as with manyy such observations, they are anecdotal - not untrue - just not rigorous enough to extrapolate to any sizable population or other specific individual.

That is why I prescribe to and shamelessly shill for programs like Track Your Plaque and Dr. William Davis. Like Dr. K. his theories (many subsequently proven) make sense but he imsists we are all different and must each become a "clinical study" of one carefully tracking our treatments and results.

Regards,


HeartHawk

HeartHawk said...

Ed:

Bingo! You completely understand my point and the EBCT example you site is classic! I also get heart scans and insist on EBCT. I mentioned Track Your Plaque inthe previous comment. It might be right up your alley if you are tracking heart disease. It is a membership site but has tons of free stuff as well.

Regarding the kidney stones I will also repeat, as I did above, that we are all different. Perhaps you can tolerate foods that I cannot. However, it is also a fact that a large number of persons have asymptomatic stones. I did not have my first symptom until age 56. I discovered them earlier quite by accident!

Regards,


HH

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That would be great news for the people who want to take proper health. Health care is the major concern of the person.

Gary Meyers said...

Having had kidney stones 4 times myself, including having to be flown out of the high arctic for treatment, you have my sympathies.

Have you considered a change of eating habits. I don't mean what the Heart and Stoke Foundation considers a change, but a real change to that of a Raw Food Diet. Check out Alissa Cohen's web site at www.alissacohen.com. You will find the effects amazing. I went from not being able to run for 5 minutes on the treadmill without coughing up a lung to running for 16 minutes without any difficulty after only 4 days on the diet.

HeartHawk said...

Gary:

Thanks I'll check it out!

HH

HeartHawk said...

Gary:

Thanks I'll check it out!

HH

John Crowley said...

Heart Hawk,
Love your blog. You are spot on about each of us having to take responsibility to take charge of our own health. And I would love to discuss the opportunity to have your perspective (like a guest post or something) on my site. Please shoot me an email at jcrowley at alliancehealth dot com

Anonymous said...

Boy you are on the money! I am always getting the "look" when I say no to unnecessary radiation.

If the doc cannot provide a credible rationale I will decline for myself and my loved ones. I try to spread the message that NO ONE will monitor your total radiation load but YOU.

As an RN I do catch alot of crap from other medical professionals.

HeartHawk said...

Anon:

It is unfortunate both that doctors have such little regard for how much radiation their patients get and that ptients have been so brainwashed to accept what docs say and do such little thinking for themselves.

This will only chnage over time if voices such as ours keep speaking out. It works. I have seen many people slowly come around. The key, as in any revolution, is to be relentless. You can only lose if you give up!

Regards,

HH

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These were really great information given by you, I really like all these information, well I think that many peopel who have kidney stones to break up the stones free of stones within three months of treatment. There may be fragments that are too large to pass after the operation. Can be treated with lithotripsy again.

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Best remedy for kidney stones has been documented just as effective as lithotripsy. And the best part about the natural treatment is that it is guaranteed, and costs a fraction of what surgery would cost.The doctors use x-rays to locate the stones in the kidney and apply external bursts of high-energy shockwaves to where the stones are located. Other method places the patient in a tub full of lukewarm water where the body will be placed in a position, which will allow the x-ray machine to locate where stones are situated.

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a LC/Low Insulinogenic diet is commenced and maintained for a while, and then, wham - kidney stone pain starts. Uh, oh, LC/low insulinogenic diets cause kidney stones

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