I have WHAT?!?!

Until 2012, I was a typical, healthy, working wife and mother.  My life revolved around my little 3 (going on 20) year old daughter. 

We had just celebrated Thanksgiving, our 7th wedding anniversary, and Christmas when I noticed my ankles were swollen at the end of the work day.  Well, old I must be if Thai food makes my ankles swell!  Little did I know I should be cherishing the last weekend I'd have with the balls of my ankles for the next 3 months. 

We made it through New Years, and then the real fun began.  I woke to go to work that Tuesday and threw up while getting dressed.  Get up and repeat everyday that week and by Friday I had an appointment with my physician who took some blood.

I was too sick to eat much less work the following week, but boy was I starting to notice that I was packing on the pounds!  My doctor called me and requested a urine sample because my blood protein levels (albumin) were low.  By the next day, she was referring me to a nephrologist.  Fast forward to the following Monday (Jan week 3) when my nephrologist - who just so happened to be fasting that day and agreed to see me at lunch - examined me and scheduled me for a kidney biopsy the following day.  From Jan 6 until Jan 16th, I had put on 14 lbs!  What?  I hadn't eaten in a week! My husband and I showed up the next day, had blood drawn, and the whirlwind began.  My potassium had skyrocketed, and I was changed to a full admit after my biopsy for the risk to my heart.  During all this they forgot to give me any Valium, so I got to experience the FULL joy of the kidney biopsy procedure. 

From here, I was too sick to remember much.  I went into acute kidney failure, and my husband and doctor decided to begin treatment for RPGN.  Any time an acronym begins with "Rapidly Progressing..." you know you're in for some serious business.  I was started on 500mg of Solumedrol which I don't recommend if you dislike vomiting profusely - which I did for the next 24 hrs.  By Friday, the results of my kidney biopsy revealed evidence of FSGS and MCD.  WTF  I was released from the hospital with improving kidney function on 60mg of prednisone.

At first it looked as though the prednisone was going to whip me back into shape.  Then February showed up and knocked the wind out of my sails.  By now I'm a whopping 30 lbs over my normal weight, and it looked like I was 8 months pregnant.  By March, I'd reached the end of the Prednisone treatment window, and my doctor was ready to start me on "Level II" immunosuppressants.  I made an appointment with a specialist at Mayo Clinic for the end of the month, and we all decided to hold off changing my treatment until I had that appointment. 

By the end of March, I was 50 lbs over normal weight and had to be hospitalized for fluid overload.  They did a paracenthesis and took 3.3 L of fluid from my abdomen...now what was I going to tell all those people I had given fake due dates for my "water baby"??  I also did a treatment of albumin injections and IV Lasix resulting in a total water weight loss of 44bls.  I could bend my knees, hurray!  Now we were ready to board a plane for Rochester, MN and Mayo Clinic.

We saw the Mayo doctor who was AWESOME.  He spent 1.5 hrs talking with us and went for the nuclear warfare approach.  He said, "It looks like a duck, quacks like a duck, but this ain't no duck.  We're not going to take a shotgun to this thing.  We're about to go nuclear on it."  Now we're in month three of this crazy mess.  Had he used the "nuclear" in January, I may have been hesitant.  By this point, I was like BRING IT ON!

We saw my nephrologist the same week, and he scheduled me for plasmapharesis in the hospital beginning the following Monday (April 2 ).  I had to stay for two weeks in the hospital, but it was so worth it.  I had put the water weight back on while at Mayo and checked in at 152 lbs.  By day 3, I was being re-weighed because I was down to 108 lbs.  WTH that is a lot of water.  And you know the only way for that water to come out is....well I'll let you think about that one but remember we're talking about kidneys here :)

Flash ahead to now where I'm considered in remission.  My protein loss went from 30g at Mayo in late March to 2 g at the beginning of April.  I'm not retaining water (holla!), and I have ENERGY!  Besides not being able to move easily the lack of energy was my biggest complaint during the whole ordeal.  I was just so tired.  Now don't get me wrong, I'm still taking naps like a champ, but I at least can get up and get dressed in the morning without needing to head right back to bed!  SUCCESS! 

And so now the road of remission begins...