Nephrotic Syndrome

Because I have everyone's emails scattered around various accounts, and because some people have heard through the grape-vine, and others have gleaned information from my facebook status, I decided to just write a note, tag anyone I can think of and let everyone know what happened. Sorry it's such a random grouping. There's a lot of medical mumbo-jumbo in here--the important thing is that I'm alive, I'm in a fight to get my life back, and I would really appreciate prayer as this is one of the hardest things my family and I have ever faced.

On Monday, February 11th I thought I was fat. At 5'10 with a schedule that didn't allow for more than a few hours per week of excercise I weighed 173 lbs. I'd been sick off and on due to my hectic student teaching/class at night/Young Life girls/family- life but other than being in a constant state of recovering from a cold or fearing the stomach flu, I was healthy. By the end of my Saturday class on the 16th, I had gained 7 lbs and was a little bitter about it so I mentioned that I seemed "puffy" to my mom on the phone and was a bit nauseous. She and my dad came home early from a trip to CO the next day. I continued to swell and by Monday morning she packed me into the car with little complaint and took me to Saddleback Hospital's Emergency room.
God's timing was so perfect. We literally walked into the ER and 5 minutes later I was hooked up to an EKG. My veins were so small and my arm so swollen that they had a hard time sticking me to put in IVs (I was upset) and then when they put in the contrast dye to do a CAT Scan of my lungs my vein burst (and I was really upset) but we found out a few days later that if the dye had made it in it would have further damaged my kidneys. I was severely dehydrated so they began pumping me full of saline to get my blood pumping.


I got the last bed in the overflow ward which meant I had a private overflow Labor and Delivery (i.e. huge) room in a hospital instead of being paired with a noisy old lady with pneumonia. My kidneys were so bad on Tuesday that they started talking full renal failure and dialysis and my liver was bad too. I didn't realize any of this at the time. I was just mad that I was stuck in the hospital in the first place and they had to do all these "tests" to figure out what was wrong. I was then livid that they kept pumping me full of liquid when the diagnosis was that a vital protein in the body (Albumin) was not circulating through my blood, telling the cells when they were "full" of liquid--instead it was wrongly coming out through my urine. The phrase they used was Nephrotic Syndrome, the specifics are still up for grabs.

I stayed in that wonderful large room until the following Saturday---at which point I had gained a total of 41 pounds. Think Violet from Charlie and the Chocolate Factory. Because 50% of my kidney function had stabilized, they sent me home to recover, on a no-salt, low protein, low liquid diet, with a bagful of pills that they compared to a round of chemo. The hospital is not a fun place to be when you're on drugs that destroy the immune system, so I've been home for 5 days now, eating extraordinarily healthy food, leaning heavily on my parents for assistance with just about everything and learning to trust.

Tomorrow I have three appointments. The first is with the Nephrologist (kidney specialist) I saw in the hospital--who, with the results of my kidney biopsy from last week should be able to narrow down a cause for the problems, and a possible time when I'll be back to normal. I'm also meeting with my Internist from the hospital who will give me the results of some blood-work I got this past Monday. I'll also see my family doctor who has all my history before her and may be able to shed some light on why my kidneys suddenly shut down, I started losing protein and my cholesterol climbed into the 400's seemingly overnight. Oh--and what I can do to get rid of the 38 lbs that are still on my frame, despite the cocktail of drugs I'm on. I'll also be checked for possible reactions to the drugs, and to see if any of the liquid has leeched into my lungs, heart or brain. All I know is I'd like this to be over sooner rather than later.

While I was in the hospital I was bombarded with love and support--flowers, cards and reminders of who I was before this began. Since coming home I've retreated into my loving family's embrace and day-time Tv. I can't have visitors because of the lack of immune system, but if any of you have an encouraging verse or story to message me I'd really appreciate it right now.

Please pray that the doctors will be wise in my treatment. In my selfishness, i want them to allow me to use the tickets I bought to see Wicked for my birthday on Saturday, but I'll send someone in my place if they say I need to be patient. Patience is hard when life is scary, but I believe in a God who is not small and is not cowed by things like walking on water or kidney disease.

This is a link to a Christian radio program called Haven Today. Part of my story was featured last week and the message really helped me see some perspective. It shows up as a free itunes download.

http://www.haventoday.org/audio/022108-64k.m3u

God's not done with me yet---there are too many people I love and I have been shown so much love in the last week that I can truly say that despite this storm, I know that my Redeemer lives.

(I was going to upload an amazing picture of the size of my feet, but I can't quite figure that out right now)