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

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.

going, going...

the other night, i had a red-letter moment.  as i've mentioned previously, i've taken advantage of the park a block behind julie's parent's house for the past several months by running around it repeatedly in an effort to get healthier.


when julie and i moved to arizona, i was weighing in at around 230 pounds.  for someone who is only 5'9", that's not good.  when i weighed myself a couple nights ago, i discovered i am down to 199!!  that's the 1st time in years i've been below 200 pounds in years.  it's a great feeling, realizing success like that.  while i'm not to my ideal body weight yet, i know i'm well on my way and can't wait to be there later this year.


i've noticed that i have 3 basic pieces that have made this weight loss process successful so far.  the 1st is regular cardio exercise.  by running for about an hour 3 times a week (at least), it's really helped me burn through calories and keep my metabolism up.  the 2nd is portions.  i've paid a lot more attention to how much i eat, realizing i don't need 2nd helpings all the time.  the 3rd is watching what i eat.  i still eat sweets and drink sodas.  i just have less of them.  this process may not work for you, but it has for me.


what i've learned (so far) in this process is that real weight loss is about a lifestyle change.  i don't use any special diets, aside from making sure i eat vegetables and fruits everyday.  and i cut down on carbohydrates.   but it's really deciding each day that the goal of losing the weight is more important than the short-term satisfaction of that candy bar...or bag of potato chips...or eating fast food.


i also want to thank julie for pushing me along in this process and encouraging me to get out and run regularly.  especially in the beginning.