September 12, 2011

Kidney Update - Updated!

Well, the good news is that I did not get punched in the face.
I had my first visit with my new nephrologist in Missouri, a little bit more than a year after we have moved. I told him the whole story of my life, or at least what he deemed pertinent to my health overall with a few snippets tossed in for fun.
I forgot how long it takes to get a specialist to actually show up for an appointment, but that is another post for another day. I was extremely nervous going into this appointment, but can say with manly pride that I did not cry or pass out, just had a bit of a headache from getting myself worked up.  (See previous post for details on why I was so nervous, but bottom line is I self-weened all of my medicines a year ago and have a long-term, chronic Kidney Disease called FSGS.)
When I was talking with my new doctor this morning and told him the saga of being medicine-free and needing to take that step to feel good about my self, physically and mentally, after years of being on gross medicines. I told him he was welcome to take one of two positions:
Say, hey, that's cool with me
Punch me in the face
I braced for a solid left hook, but it didn't come. He talked about the academics behind FSGS versus MCD (Minimal Change Disease, which is more common than my disease but usually starts at a younger age than mine did.) We talked about possible triggers and such. He looked at me and sort of took my side on the whole matter saying I had taken a "calculated risk" but had covered bases nicely with an out clause insisted on by Anny.
In other words - no harm, no foul.
Now comes the fun part - seeing how much harm I may or may not have done. I am slated for a11 blood and/or urine tests at some point in the next two weeks*. (All at once, I just have flex on when I get it done.) I did double take, twice, as he was checking things off left and right on the order sheet!
Without those tests there was very little that he could tell me from today's visit from a kidney point of view. I do not have much swelling at all, and have not for a long time. (Certainly not compared to my friend Jenn - check hers out!) I have lost about 15 pounds over the last year, but I attribute that mostly to cutting out soda and going off of the medicine, we will see how the next year goes. He did note that my Blood Pressure is a bit high, which is not surprising considering I have been off of my meds for more than a year. (130/100 for those who care to know, and for record keeping purposes.)
When I left I was given the list of 11 tests and a "see you in a month" from the doctor. That will give me two weeks to get the tests done, two weeks for him to look them over (uh-huh, sure) and we will come back and develop a plan of attack. Right now I am open to anything and committed to doing whatever we agree is right for my long term health. I dread the idea of going back on steroids, but it has been more than ten years and maybe it's time for another kick of that. I am open to trial medication - someone has to be a guinea pig, why not me?

So, that is the story of my doctor's visit today.
*One of those is a 24 hour urine sample, and any of my friends in the Nephrotic Community can tell you how "fun" that is! Actually, he suggested setting up for a Sunday and just say "well, I'm tied to the house, darling, and have to stay home and watch football today!" Guess he does not realize that works for me on any Sunday already. :)


  1. Hey Rob! Glad you finally made it to the doctor Sounds like, at least initially, that you found a good one that didn't get all preachy with you. That list of blood tests can be scary... First time for me it was 9 vials of blood...that's a lot when it's sitting on the table in from of you! Good luck!

  2. I'm glad to hear you found a doctor who is willing to work with you rather than tell you that you're doing it all wrong! I think ultimately our state of mind has a lot to do with our ailments and if you feel better off meds then it is probably helping one way or another!

  3. Well, that's an awesome start! Good for you! :-)