Friday, August 6, 2010

Health Update

After my doctor visits each day thi week, I'm happy to report that progress is being made!

My INR (blood thin/thickness) levels have evened out to a therapeutic level.  While for a normal person an INR of 1.0 is normal, the goal is to keep my INR between 2.0 and 3.0.  On Monday it was 1.6. On Wednesday it was 2.1 and today it was 2.3.  I alternate dosages of coumadin every other day and hopefully this will keep it regulated.

I had a dr visit with the Rheumatologist on Tuesday to be able to rule out any rheumatological issues I may be having.  Originally back in June, some labs came back high in the rheumatory family so as a precaution, I had a visit with the dr.  Also, while in the hospital, one of the potential secondary causes of Minimal Change Disease (MCD) could be rheumatory/lupus related.  They did an initial lupus test that came back abnormal so they did a second, more specific one that came back positive.  At this visit, the dr explained that for something to be certainly, 100% lupus, there are 7 things/characteristics that they test for and a person must have at least 4 of them to be considered lupus positive.  I only have 2 of them. So they have ruled out lupus.

They dr did however say that I have Antiphospholipid Syndrome which is a clotting disorder most likely related to the kidney issues.  It can explain why I developed the clot, the MCD and why the rheumatological lab results were off the charts.  Fortunately, this is treated with the coumadin.  Also, with this syndrome, it can lay dormant and then within 1-2 weeks the symptoms can arise.  This is in line with what has gone on with me.

On Thursday I had a dr appoint with the nephrologist (Kidney dr) and found out a lot of good stuff.

While my thyroid and cholesterol are still really high, my protein in my urine has reduced dramatically! YAY! A sign that the prednisone is working!  A healthy person should have under 30 units of protein in their urine.  When I had the original lab the amount of protein was 7823 units.  As of this week, I have 851 units.  While still high, it's getting much better! I will continue taking the prednisone for another month at 60mg/day and then start to taper off of it after that.

Now that I'm down past my original weight before all of this started, I can stop taking the diuretic.

My blood clot is still there, most likely, as it takes a while for it to dissolve. The filter will stay in place for now.

In regards to my diet, there are no restrictions except to try to keep a low sodium diet since I've stopped taking the diuretic. No limits to water intake.

I'm still curious as to the cause(s) of all of this. While they don't have a primary cause, there are many secondary causes that could have contributed to MCD and Nephrotic Syndrome.  While we've ruled many of them out, there are still some that I wanted to explore. (Thanks Joely for helping me think of these!!!)

- Increased amount of metal toxin - this would be like exposure to mercury or lead
     - Only if I've been exposed would this be an issue and if I had, then my blood count would go really high. There has been nothing in my labs that have indicated an increase in metals in my system.

- Scleroderma - an auto-immune condition
     - My skin and joints would be pulled tight because of the vessels becoming fiberous.  This hasn't happened. Also, the rheumatological tests have ruled this out.

- Hodgkins Lymphoma
     - I would have white blood abnormalities, which I don't. Also, the prednisone would make the condition worse, which it hasn't.

- Lyme Disease
     - While the drs are skeptical of this because its uncommon in AZ, I've asked to have the blood work run to rule this out because of my living in Kansas City and Nashville.  I will have this done next Wednesday.

Ok, so that's all I know for now.  I am so grateful for all of your support and prayers as I continue to head to recovery.  Please feel free to talk with me about this.  It's a lot easier to update on the blog and I appreciate your warm wishes. Much love!

Monday, August 2, 2010

striking a chord...

even outside of "music city usa" my music passion flourishes.  while i haven't purchased a ton of CD's since we moved to the phoenix area last year, i have come across a bunch that i think should be shared.  keep in mind, these fall under the "new to me" category, although some are actually new-ish.  some i have come across thanks to the library system, so they are now on my iPod (which is named "medpod").  here are some of my favorite recent discoveries.

silversun pickups - "swoon":  i love the guitar effects this band uses.  while their 1st album, "carnavas" wasn't that impressive, "swoon" is full of stand-out tracks.  they have some elements of shoegazer (always a fav for me) with moodiness thrown in for good measure.  "panic switch" and "the royal we" are a couple favorite tracks.

bobby womack - "the soul of":  this is actually a best of collection.  at some point over the past year or so, i heard "across 110th street" (a song he wrote for the 70s blaxploitation film of the same name) and the chorus seemed permanently stuck in my head.  this meant only one thing.  i had to get the song.  i can't say i like every song on "stop on by", but bobby womack had a knack for writing great hooks.   the 1st song on the album, "daylight" i am completely addicted to.   simply great 70s soul. 

jonsi -  "go":  if you don't know, this is the 1st solo album from the vocalist of sigur ros.  their album "takk" is easily in my all-time top 10, so i was eager to hear what he would do on his own.  i became even more excited after hearing his interview on npr's "all songs considered" back in march.  he does so much with song textures and sweeping orchestral arrangements.  epically beautiful.  the songs "tornado" and "animal arithmetic" are great examples.

stavesacre - "against the silence EP":  alas, this very well could be the swan song for one of my all time favorite bands.  5 songs of bittersweetness.  i do realize that's not technically a word, but i'm going with it.  it comes very much in their recognizable melodic hardcore time signature.  my favorite song is "...the band played on", followed by "the dash on my headstone".

that's a small peak into my recent music addictions & i can't wait to hear what other ones i'll come across in the future.