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.

the debate is getting violent

unless you've been hanging out in a cave lately, i'm sure you've noticed the debates that have been going on across the country about the healthcare reform president obama is proposing.

i don't know where you stand, but i am completely for healthcare reform. what that means to me comes down to several things:

1. quality healthcare available to everyone, all the time. no exceptions.
2. insurance providers that are care-based instead of profit-based
3. no one gets denied coverage because the insurance considers the treatment "not medically necessary" or it's considered a pre-existing condition
4. you have healthcare simply because you are alive, not because you have a job

i see it too often where i work where people are denied treatment for these reasons, and some others that are made up by health insurance providers as a method to deny coverage (that the patient is paying for) so they can increase their profits. i think healthcare is a human right, not a privilege only for those who can afford to pay for it out-of-pocket or for those who have jobs. you shouldn't have to be concerned about going bankrupt because of a complication during pregnancy or because you or your spouse gets cancer.

a lot of the talk about healthcare reform has been based on some people thinking the single payer option is "socialist". for that argument, i encourage you to look at this link. we're already close to it. i don't say that as a warning, but it's not as bad as people think. especially when i read a thread like this one on reddit that has people from iceland, france & canada chiming in about how incredible their healthcare systems really are. the US has the one of the worst healthcare systems out of all the developed nations. and we claim to be the best country to live in? if you're healthy, white and male...that's very true.

it's become really obvious to me that most (if not all) of the people who are protesting at these town halls and healthcare debates across the country fall into this category: white, middle class, and republican. most of them, from the points they bring up, have not even read the actual proposed bill and are only listening to people like rush limbaugh (and others who are only trying to push their own agenda) and are not listening to both sides. check out this interview with frank schaeffer (a christian activist) as he talks about this issue.

since a lot of this has become politicized, i encourage you to read the bill for yourself. i'm tired of hearing things like it has a "death panel" or other such nonsense. that was made up by a certain vice-presidential wannabe to get some press. be informed.

Text of Proposed Healthcare Reform Bill

this post is my small effort to dispel some of the myths, etc that are being spread about this issue. i encourage you to honestly research this and what it could really mean for you. not based on fears or what someone else has told you. unless that someone else is an expert in this area.

EDIT: i just came across this post from Tim Wise on facebook about the whole healthcare as an equality issue.