Saturday, July 24, 2010

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