Sunday, March 26, 2017

The Sunday Wrap Up . . .

I mentioned the follow up testing I was having this week pertaining to The Kidney Stone Incident., and my friend, Ely, asked me this: "Is this amount of follow-up for stones the norm, or are these just preventative measures because the Drs aren’t sure why you got the stones in the first place??"

I've wondered about that myself, and the answer is that I don't know for sure.  Another friend who has had two stones told me that they were doing 99% more testing on me than she had had (she lives in another state), so there's that.

But I do know that there is a tremendous difference between the first urologist I had (who did my surgery) and the one I have now in terms of interest in my case/wanting to help me avoid another stone.  In addition, I have an excellent primary care physician - he's been on top of this since it started.  As well, I live/work in one of the largest cities in the country with some of the best doctors and hospitals in the world.  Having lived a lot of other places, I can say with certainty that the standard of care here is exceptionally high.

So - these are the tests the new urologist requested since I started with him:
  1. Urinalysis:  I had to pee in a cup there in the office for them to make sure there was no bacteria in my urine.  There wasn't.   
  2. Blood Draw:  My understanding is that the initial blood work I had when I met with the new urologist's physician's assistant a couple of weeks ago was necessary to rule out certain physical causes.  I didn't have any of them.  Yay!  It did show that I was just under the range for hemoglobin, and I was advised to follow up with my primary care doc - which I did.  Nothing to worry about unless it doesn't correct itself by the next time I have a blood draw.
  3. A Follow up Ultrasound: I had this on Thursday.  The first urologist had requested that I have one of these before I saw him again in 6 weeks, so I think this is common.  He never explained it to me however, just told me to get one . . . if you know me at all, you know that didn't go over well with me.  There is good reason for this test - it's to make sure there are no other stones hiding in my kidneys (I don't think there are - no one mentioned any in the ER or hospital), and also to be sure that there was no residual swelling or scarring in my kidney/ureter from the stone.  The one I had on Thursday was far more extensive than the ultrasound I had in the hospital prior to surgery, and the tech spent a lot more time on my left kidney (where the stone was) and looked at it in many more ways than she did the right.  This gave me pause at the time, but I know she can't say anything or she could lose her job, so I didn't question her.
  4. Two, back-to-back 24-hour Urine Collections:  This is the last test, and I've been doing it all weekend. To do this, you have to collect your pee.  All of it.  For two, 24-hour periods.  That means you can't pee anywhere but at home.  If you miss capturing your pee, the test is ruined and you have to start over again.  It's kind of a pain, but it's not difficult.  You just have to follow the instructions they send you with the kit.  I'll be FedEx-ing my samples back to the lab tomorrow morning.  The first urologist mentioned it to me, but he didn't explain or tell me anything about how important is it, so I declined to do it.  The new urologist's PA explained it extremely well, and my own research made it clear to me how important of a test it is.
In fact, this last test is probably the most important one of all.  This is the test that should tell the urologist what caused my stone to form in the first place so he can tell me how I can hopefully avoid having a recurrence.  Unfortunately, once you've had one stone, you are at a much higher risk of having another.  So - four tests.  Is that a lot?  Again, I don't know.  I don't think so, though.  And are they preventive?  No - I think they fall into the diagnostic category.

There are also some additional circumstances that may (or may not) be contributing to the level of testing and care that I've received.  Again, I don't know if these things have any bearing on what's going on or not - but:
  • I couldn't pass the stone on my own even though it was of a size that 60% of the population, in theory, should be able to pass on their own.  Because I couldn't pass it, I had to have surgery to break it up and extract it.
  • I have a family history of kidney disease.  My father died at the age of 33 from kidney disease.  No one except me seems very concerned about this, but I tell every doctor, so maybe they are keeping that in mind.
  • I am extremely motivated to never, ever experience that pain again.  Seriously. Motivated.  I will do whatever they tell me I have to do to avoid another stone.
That's the update from here.  I've nearly finished working on my taxes (yes, I'm about a week behind in pretty much everything), and one load of laundry is done.  Time to get another load of clothes going, and I'm going to block my Hale-Bopp Shawl.

I'm in another 80s mood . . . Back to Germany days . . . bizarre video, he's a terrible lip-syncer (worst than Rod Stewart, and that's saying something  :-), but a super amazing tune.


Anonymous said...

It always frustrates me when the doctors and nurses can't take the time to explain why a procedure is needed and how it will be done. I've learned over time that I need to ask them. Why? and How? come out of my mouth very easily now. I've also learned that the people in the medical field are people, too. I'm no longer in awe of any doctor. I have high respect for them and appreciate their years of education.

I have also learned to speak up about my medical history, because they don't always read the file as completely as they should. I'm sure they just don't have the time, so it is a good thing that you bring up your dad's health history. Family history does play into your health makeup. I've gone back a couple generations for medical history and it has helped my doctors in prescribing meds or procedures.

I think it's wonderful that they are taking such good care of you and looking at every angle to give you a better quality of life. And it's also a good thing that you have good health care coverage. It's amazing how much some of those procedures cost!

You are in my prayers, Annie, and I hope that you will have answers soon and that your health will improve and that you don't have to fear ever having another kidney stone.

Janice H.

A :-) said...

Janice, thank you so much :-)

Even though I've had these weird things one after another, I actually do feel pretty good right now. I'm as tired as I was - that makes a huge difference :-) There are two major reasons that I didn't want to continue with the first urologist. (1) He seemed insulted that I would question anything he said and he just didn't seem all that interested in me as a patient; and (2) he gave me a PRESCRIPTION (that Walgreens filled without question :-S) for something that was available over the counter. I paid nearly $70 for something that costs about $6 bucks. I mentioned this to him and he was like, Oh, I think you can get that over the counter. And I was was like, why didn't you tell me that?? That would have been very good to know.

So it goes - I am a good advocate for myself and I'm never afraid to question something I don't understand. Again, many thanks for your kind words and thoughtfulness :-)

A :-) said...

That should have said I'm NOT as tired as I was :-D

Michelle said...

I am an outspoken advocate for being your own – an your loved one's – best advocate! Question everything, research everything; be an educated consumer of medical services. (That's part of what makes my dad's situation so frustrating; I am not allowed to be involved, to learn, to advocate.) Thanks for sharing your journey with us; it helps educate us all! (Glad you're not as tired.)

candy said...

Shame on Walgreens for filling it and not giving you a heads up. Doctors don't have every medicine's cost memorized, although I have been told by a doctor if it is available OTC. My doc also recommended I download an app onto my phone called GoodRX. You can search for your medication and then find the cheapest place to get it. It's not insurance, it's a coupon, and you still need a script from your doc. Example, I have a script for a tier 4 asthma medicine my insurance refuses to cover. GoodRX shows that although I could get it for $61 at Walmart, I can go to Walgreens and get it for $33.90 (over half off). All I need to do is show the pharmacy the coupon in the app.