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!