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!

Minimal Change Disease and Nephrotic Syndrome

Hi all!  Although there are many articles out there, here is one about Minimal Change Disease (MCD) that is pretty helpful.

And another article on Nephrotic Syndrome, which MCD causes.

Good News!

Hi everyone,

Well it's been a crazy week!

I went into the ER at the county hospital on Sunday July 18th with some pain in my left arm, a rapid pulse and a hard time breathing.  we decided to head to the ER to be checked out since my health has not improved and, to be quite honest, we were tired of waiting for answers when i have to deal with pain and discomfort every day because of my health problems.   after the staff at the hospital brought me into the ER, they gave her an EKG, a CT scan, an ultrasound and ran some other tests. 

from the ultrasound, they saw that I have fluid around my spleen, liver and lungs but not my heart.

from the CT scan, they determined that i have a rather large blood clot in the aorta leading to my right kidney and I also have Nephrotic Syndrome, which can be caused by a number of things.

after a kidney biopsy they drs determined that I have Minimal Change Disease, which causes the Nephrotic Syndrome.  It can be treated with a host of medications but I should hopefully start seeing some progress within 12-16 weeks and if all goes well and my body responds positively to the treatment, should be good by the end of the year.  There is a good chance that I'll relapse within the following 6 months after that (Jan-June 2011) but we'll see.  I'm on steroids to help calm down the kidneys.

i also had a filter inserted to keep the clot from traveling to my lungs or heart or brain.  if the clot stays below my knees, then that's good. but its still in my kidney area.

once/if my kidneys start to calm down and become less inflamed, then the other issues should start to go away and I hopefully, will be able to wean myself off of the medications.

High Cholesterol - because my kidneys are inflamed, my liver is freaking out

Swelling (Edema/Anasarca) - bcz of kidneys not holding protein, i'm retaining fluid, but this should even out too - I switched diuretics and this one seems to be helping.  I've lost 12-15 lbs so far!!!

Thrombosis (blood clot) - same with kidneys, if I have a predisposition to clotting, and my blood protein isn't able to even out the clotting factors because there is no/little protein in the blood, then I could keep clotting. but again, once the clotting evens out because of the blood thinner, then hopefully that will be ok. I will probably have the filter out in the next 6 mo.

I was released on Friday July 23 and will have many follow up appointments and a rigorous medication regimen.  I will keep you posted as my progress continues!

Brian and I have been very impressed with the treatment I have received at the county hospital in phoenix.  the staff have been courteous, compassionate, caring and thorough.  we're grateful we are finally getting some answers on what's been going on!

Thank you to all of you who visited me or Brian in the hospital. It was so reassuring and uplifting to have your presence with us.  We also thank you for your prayers for continued wisdom on the part of the doctors and nurses who are taking care of me.  And for your friendship and love for us - we are so loved and blessed by you!

thank you for your care and love,
Julie and Brian

many, many things...

i'm sure you've noticed the past couple blog updates, but you may be wondering what else julie and i have been up to over the past couple weeks.   i'll try to do this chronologically.  :)


julie and i celebrated our 2nd wedding anniversary on november 3.  one of the things we did was go to the tempe improv a few weekends ago and saw comedian ralphie may put on a show.  he was quite funny, even heckling some of the audience members.  that following weekend, julie & i had a fun time in payson, az and flagstaff, az celebrating our 2nd wedding anniversary and my new job.   this was my first time to flagstaff.  it was nice and cold there, since it's high up in the mountains.   when we arrived in flagstaff, our 1st stop was at the beaver street brewery for lunch.  we had some great, yummy, sweet chili that hit the spot. we then went to the museum of northern arizona, where we learned about the history of native americans in the area, as well as a bit of cowboy life.  we also ate at a couple places that have been featured on diners, drive-ins & dives.  


we spent thanksgiving weekend here in phoenix.  julie's aunt kathy flew from washington d.c. for the holiday.  it was the 1st time since spring 2006 that we had seen her, when we went to d.c. to see her.  naturally we had lots of turkey in the midst of a very full house.  we also watched the detroit lions do the 1 thing they are very good at...lose.  saturday afternoon we went to the final arizona state football game of the season, when they played their rivals the university of arizona.  what did they do?  they lost, too.  walking into the game was fairly entertaining, as julie's dad trash-talked some U of A fans on our way to the stadium.  and yes, her family is VERY passionate about ASU.  i find it quite entertaining.


julie and i have decided on a church home.  we've decided on dayspring umc.  we've gone there for several sundays, and we like what it has to offer.  julie has known the senior pastor, jane, for quite a while.  i've found that i really like her sermons.  she doesn't do the normal sermon of starting with a story or joke related to the sermon, then transitioning into the meat of her sermon.  she seems to pick a topic or theme, and weave her sermon around that.  today's sermon was based on hope.  which was very topical, considering it was the 1st sunday of advent.   we thank you if you've been praying for us in our search for a church home. 

Ode to Phoenix

In less than two weeks, Brian and I will be moving to Arizona. We are thrilled to be moving and starting a new chapter in our lives. We are also excited to be closer to my family and their love, encouragement and support, although we aren't excited about Jay and Joely and Jalen moving to OK rather soon after we arrive. We do know this is a good and exciting chapter for them in their lives as well. We will DEARLY miss them.

As Brian and I have been physically and mentally been preparing for the move, we have been making a mental list of all of the things we are excited to see, do, experience, etc. upon our arrival in Phx.

Here is a short list of those things in no particular order:

• being close to my family, especially my grandparents
• reuniting with old friends and making new ones
• being in the desert climate
• being in the "west" where we can find solidarity with those who have more progressive views of life than the south
• attending ASU football, Phoenix Suns, Phoenix Coyotes, Arizona Cardinals, and maybe MLS games
• showing Brian all of the houses I lived in while growing up
• showing Brian the different schools I attended
• attending performances by the AZ Ballet and Phx Symphony
• having a strong support system
• spending time with my best friends
• spending time with my siblings
• swimming in my parents' pool
• exploring various parts of AZ
• exploring other parts of the west such as San Diego, San Fran, Anaheim, Portland, Seattle, Vegas
• taking Brian to Disneyland- the happiest place on earth and IMHO, much better than Epcot
• spending time in Sedona again
• hot air ballooning in Sedona
• helicopter rides over the Grand Canyon
• escaping the humidity of TN
• riding the light-rail
• going to SupperThyme/Dinner-a-Fare

That's all for now. We're counting down the days!!!

i'm sure you've noticed...

....but our blog looks different. we decided it was time for a change to the look of it. hope you like!

the times, they are a changin'

it's still a shock to me how quick time can go. it dawned upon me that it's been a bit since we posted anything here. so, i thought i could at least give an update on what's been going on in the life of Brian & Julie.

one of the biggest fun new developments is we now know where we're living next month. our lease on our current apartment ends August 30. we could have renewed our lease, but we decided we needed a place with more space. it looks like we've found that in a house not too far from where we are now. it's a rental...and in great shape. it has 1600 square feet of joy with a deck, a yard, & all the fixins'. yes, that was a bit a bit southern. but we're definitely excited about this place...especially since it's not too much more than what we're paying now for our 1000 square foot apartment.

right now, though, julie is in her home state of arizona enjoying some time with her family. they're renting a houseboat for a week and cruising along Lake Powell, which is near the border of arizona & utah. it's a much needed escape for her. she's had to deal with a lot of issues at work recently, and my only hope is that she comes back recharged & refreshed. why is brian not there, you may ask? simple. my employer would not grant me the time off to go.

so, as an antidote for missing my wife, i went on a bit of a shopping spree this weekend & purchased a bunch of wonderful new music. i love what i've heard of it so far.

1) R.L. Burnside - "Come On In"
2) The Avalanches - "Since I Left You"
3) Cadence Weapon - "Afterparty Babies"
4) She Wants Revenge - (self-titled)
5) The Appleseed Cast - "Two Conversations"
6) The Forms - "T.B.D."
7) Jimmy Smith - "Root Down (Live)"
8) Over the Rhine - "Ohio"

some of these purchases were steps in expanding my musical horizons. namely Jimmy Smith (jazz), R.L. Burnside (blues) and Over the Rhine (americana/bluegrass).

thanks for tuning in for another episode.

P.S> an imaginary gold star to the 1st person who comments with the name of the artist, album and year for the song referenced in the title. it shouldn't be too difficult.