nerdy techy goodness

last week i had a bad situation turn into an incredible, thanks to the folks at apple, inc.

i've had the same macbook for almost 4 years now.  it's a great machine and has been incredibly reliable.  much like my honda civic.  last tuesday i'm online, putzing around on some websites when my macbook suddenly freezes.  i'm unable to get it to do anything so i shut it down then reboot it.  upon rebooting, all i get is a white screen with a folder in the middle that has a question mark inside it, blinking.  i do some research online (thanks to julie & i getting blackberries the previous weekend) and discover it's most likely a hard drive issue.  not good.  as in not $500 good.

as i researched more, i found out that in february apple issued a warranty on macbooks like mine for hard drive issues.  suddenly things looked brighter.  when i went to the apple store at san tan village (a shopping center near where we live), the genius told me the warranty ended on august 15.  3 weeks earlier.  my heart sank.  he quickly followed that up with saying since it was within 1 month he could extend it to me.  yay!  the next day i had my macbook back.  to top it off, it now has an extra 100 gigs of memory and they upgraded the operating system to OS 10.5.  I previously had 10.4.

the only downside is they were unable to save anything that i had save on my computer.  fortunately all my music, pics & important documents saved on an external hard drive.

apple definitely went out of their way to make a customer happy.  i now have, for all intents and purposes, a new computer that will hopefully last another 4 years.  and someone who will be forever loyal to apple.

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!

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.

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

Health

I know it's been a while since I've blogged but there’s been some stuff that's happened recently regarding my health.  I’ll try to make this an annotated summary. :)

At the beginning of June, I started having some swelling in my feet/ankles and woke up one day with a very tight chest and was short of breath. My stomach issues flared up and was uncomfortably bloated. My dr reconfirmed IBS and also prescribed blood work.

After various reactions to medicines and steroids, I found myself in the ER having more blood work, an EKG and a chest xray. Turns out, my sedimentation rate (how fast my red blood cells fall in a tube in 1 hr) is either high or low (can't remember right now) and so they think it could be something in the rheumatory family (arthritis most likely).  Urine tests show that I'm NOT pregnant.
 
Later that week, the dr said that the initial tests that they did came back slightly hyperthyroidism. They also said that I have elevated labs and that it's probably an autoimmune disorder. More of the tests they had run came back indicating an overactive parathyroid which could be causing the fatigue and swelling (edema).

At the beginning of July, the diuretic didn’t seem to be working so they upped the dosage and then still no results and then upped the dosage again (80mg/day). I have a Vitamin-D deficiency and am on a thyroid pill.

 
After even more blood work, my cholesterol levels are higher than they were 1 month ago.  My albumin and calcium is low as well. I've gained almost 40 lbs since the beginning of June and my joints and muscles are very tight and stiff.  It's quite uncomfortable!

A recent visit with the dr determined that my kidneys are not retaining proteins for my blood, rather I'm peeing the protein out.  And, I'm retaining the fluid and it's going into my blood which is causing the anasarca (localized edema).

They will measure exactly how much protein I'm releasing.  If it's more than 3 grams, then it could lead to something called Nephrotic syndrome.

They don't want to prescribe any more medicines at this point, even a cholesterol one. They want to try to address the underlying problem with my kidneys first. I'm still on the diuretic and vitamin D (for a deficiency), and levothyroxine (for thyroid). The diuretic doesn't seem to help relieve the retention, but at least it's holding it so that the weight gain has leveled out this week.

I have upcoming appointments with a rheumatologist and a Nephrologist (kidney specialist).

Since Brian is working at a hospital through a temp agency, he’s not considered a full time employee and therefore does not have health insurance.  I have a part time retail job but am considered seasonal/temporary and therefore don’t have access to health insurance either.  We applied for the state funded health care but because we make more than the allowed amount for a couple ($600/mo – which is ridiculous!) we are over qualified. We have a found a medical clinic through the state hospital that allows us to have treatment wit ha payment plan based on our income.

It's been a long journey and its not over yet.  Brian and I thank you for all of your prayers and encouragement.

disappointed

it's been 2 days, and i'm still feeling it.  the netherlands lost to spain on sunday in the world cup final, 1-0, in overtime.  i felt like things were going wrong for the dutch in the beginning of the 2nd half.  they amassed 9 of the 13 yellow cards handed out, including a red card handed to john heitinga (who plays for f.c. everton, the english team i support). 

i felt emotionally drained after the match.  i was quite excited to watch it, and was glad to have my fellow soccer dork, rex, join me.   by the end, after watching a great 0-0 game go to overtime, my frustration and hope had collided with each other too many times. 

the atmosphere in the pub we went to was good, with about 70% supporting spain and 30% for the dutch.   the netherlands definitely played a little dirty, which explains the amount of yellow cards they received.  i do still feel that howard webb, the main referee during the match, did a poor job.  he's the same guy who handed out 3 yellow cards to 1 player in 1 match in the european championships in 2008.  the rules state it's 2 yellow cards an you're out.  how he was able to ref the biggest sporting event on the planet after that display is beyond me.  

in the end, i'm not sure if spain were necessarily the better side.  thanks to the ref stopping the game so much to hand out yellows, neither side had a chance to develop their individual styles of play.  the netherlands definitely had their scoring chances, with 2 by arjen robben that he should have capitalized on.  but after heitinga was taken out it was simply a matter of time before spain scored.  the netherlands should have gone into the match with a better game plan than playing as dirty as they did.  i just hope this isn't going to replace the total football they are known for.