What is normal anyway???



I am dragging...and limping...and hurting tonight!  I think I've overdone it a wee tad bit.  I know I'm in remission and all, but I suppose it is still possible to overdo things (?).  I think that's normal, but then again I'm not sure I've exactly figured out what normal is supposed to be.  I'm just now getting back to work full time on a somewhat consistent basis, and last week was a pretty big week for me being in the office every day as well as having something going on every night of the week.  I really wanted to get back into the gym after being sick and unable to go.  I think I ache as much from being in bed as I do from physical activity.  So gym...check.  Morgan's first night of a new ballet class (which actually turned out to be a tap-ballet combo with the first night being tap - whoops)...check.  Out for dinner for a friend's birthday...check.  Fall carnival at Morgan's school...check. 

Our little under the sea fairy

A what was I thinking 730 parent-teacher conference at Morgan's school to work to an after work appointment...check.  Race for the Cure at the butt-crack of dawn on Saturday morning...check.  For some reason I decided to jog even though I haven't gone jogging since I got sick.  Again what was I thinking.  Maybe these meds are affecting my brain more than I though.  Take Morgan to the park...check. 

I love when the slide does this to her hair!



Make Halloween cupcakes & go to a birthday party...check. 

She sings everything instead of saying it...my friend Shanna will vouch that I totally used to (still do actually) do this. 

Take Morgan to the zoo...check. It was a great day for the zoo, and I wouldn't take it back for all the aches in the world.  We got up close and personal to the tigers, zebras, and elephants.  And Morgan was doing a great job practicing her smiles for the camera.  Happy little girl!



The closest one of the Sumatran Tigers have ever been while there!

Introducing Sprinkles the horse to the giraffes

According to the guide on the train once, this species of zebra are actually aggressive.  Who knew zebras could even be aggressive and mean?!?





I just love her!

I digress...so back to this aching thing.  Here it is Sunday night, and my left knee is killing me.  My Achilles behind both feet are killing me.  My back is killing me.  Either my 30s are catching up quickly, my 40s are coming early, or my body just isn't really ready for the old normal.  Then again, maybe this is my new normal.  I guess we'll see.

A walk for a different cure

Fall is notorious (said in my head like no-no-no-notorious...as in the B.I.G) for fundraisers.  I've participated in a few walks and 5Ks for various causes, because well...that is the right thing to do.  You do what you can to help people who need help.  This year is no different.  I'm participating with my company in the Komen walk next weekend.  No big deal.

Well as of a few days ago, I've learned there is a new walk in town that is a very B.I.G deal - see Biggie Smalls reference above - to me and my family.  NephCure is a foundation that supports research to find better treatments, the cause, and hopefully one day a cure for FSGS and Nephrotic Syndrome.  That's the story of my life this year...FSGS and Nephrotic Syndrome.  I used to be a lover...now I'd definitely define myself as a fighter because of my run-in with this devastating disease.  Actually I technically am a fighter considering I started Brazilian Jiu Jitsu this morning, but we'll save that for another post.

Now if you've read any previous posts, you'll likely agree I've been incredibly blessed in my battle with this disease.  As of this beautiful 20th day of October, I'm completely in remission.  My protein loss is 34mg per day.  My kidney function is 100%.  My labs are completely normal.  You'd never suspect my immune system attacked my kidneys which in turn retaliated and tried to take my life!

I've learned during my brief experience with this disease that I'm one of the fortunate few that received the education and got the treatment from the specialists who could help to get me where I am 10 months later.  There are so many people that go undiagnosed or who don't have the opportunities that I had.  The worst part...this stuff usually attacks children. 

Ok, I'll stop with the sappy tugging of the heart strings.  All I'm asking is that you'll consider taking the time to look at my team page for the NephCure Foundation's Oklahoma Ghost Walk 2012 and donate.  To keep it simple (remember K.I.S.S. in school?) I made the team name The Bad Bad Beans.  We were unable to put together a physical walk this year but did not want to give up on 2012.  A ghost walk is a virtual walk where you can go online and make contributions to support something very near and dear to my heart...well ok to my kidneys but you get the point.  The link below can take you to the NephCure page where you can find information about the event in OKC as well as the foundation itself.  The "walk" is open until the end of November.  Anything you could contribute would be greatly appreciated.

NephCure Foundation's Oklahoma Ghost Walk 2012

I'm part of a committee that is working on 2013 and 2014 benefits for NephCure.  Stay tuned for an actual walk or maybe even a golf tournament!

Adventures with a Little Tea Pot / Mourning my Morning Coffee

I had a consult with a holistic kidney doctor last week who gave me quite a few recommendations.  Some of the supplements I am going to run by my doctor before trying.  Some I'm a little weary of anyway.  I'm just not sure about taking melatonin up to the point that I get a "melatonin hangover" and then backing off to find the appropriate dosage.  That just freaks me out a touch.  Mostly I wanted to get an idea of the good and bad foods and other natural methods of helping my kidneys stay healthy. 

Most of the good foods I already eat and love...berries, cherries, apples, grapes, celery, garlic, yellow onions, red onions, green peas, cauliflower, grass fed meat (in small portions), organic blue corn, curries, ginger, lowfat yogurt, and green tea.  Mmmmmmm....garlic. 

The hard part is the foods I should avoid, and number one on the list is coffee.  If you know me at all, you know that every morning I can be found either 1) at my desk with a cup of coffee within reach or 2) on the patio before Morgan wakes sipping a cup of coffee and listening to the birds.  Now since the whole kidney thing started, I have made the noble switch to decaf.  Giving coffee up altogether...now those might just be fighting words.

Ok, we'll back up.  I am willing to do ANYTHING in my power to increase the odds that what I went through at the beginning of this year does not happen again.  There are studies that show coffee can increase proteinuria.  I will even admit that if I have multiple cups of coffee without drinking any water, I see an increase in bubbles...pee bubbles that is.  For the people who aren't sporting a knowing smile at the moment because you've never had the pleasure of spending time examining your urine in hopes that it will just look normal for once...more bubbles equals increased proteinuria.  It's just that I please want to have a cup of coffee in the morning.  I really like the taste of coffee with just a splash of cream.  It's good, and it is a taste I associate with both motivation and relaxation if that can even be possible. 

Some of you may think I'm crazy, but I am going to continue to have my coffee.  I will limit myself to no more than 1 cup per day with an occasional second cup only if separated from the first by a bottle of water.  So there is my vow.  Now I have to figure out a way to fill a couple more cups.  This is where the recommended foods come into play.  I've decided to give tea a go.

Green tea is the one everyone keeps telling me to drink.  I think if you like the taste of a fresh cut lawn diluted in some water, green tea is where it's at!  While I do get excited about rocks & soil, grass I prefer to smell rather than taste.  Besides, it makes me itch if I roll around in it.  I'm willing to do anything though, so I did a little research,  got a cute little red tea kettle, and ordered a few different teas.  You'll note there is a strainer. I meant to go pick up a tea ball infuser, but I forgot. I wasn't going to let a little thing like that stop my efforts at kidney therapy, so I pulled out the strainer, steeped the tea in a measuring cup, and strained it into my tea cup. 

Remember the grass comment? I mean it even looked like I was brewing up a cup of lawn clippings.

Yep, tasted like grass in a glass.  It's for my own good, right? Yes, good for me.  Ok, whining over.  I'm switching, I'm switching already.  Ummmm...yum? At least I know I like chamomile. 

Nah, Nah, Nah, Nah....Nah, Nah, Nah, Nah...Hey, Hey, Hey...Goodbye

Today was the last injection of Acthar.  I've been reading up on cortisol, you know, just in time to go off of this drug.  These injections are similar to the Prednisone I took earlier this year except that the Acthar acts one step earlier in the chain. I like to think about it like this...

 Prednisone from what I understand is cortisol.  You have to taper off of Prednisone, because you need to give your body a chance to start making its own cortisol after feeding it manufactured cortisol.  I was on the relatively high dose of 60mg per day, but even the little packet of Prednisone you are prescribed for a chest cold has a taper schedule.  Acthar on the other hand is an injection of ACTH (a hormone usually produced in the pituitary gland) which tells your body to produce cortisol.  Among many other things, elevated cortisol acts to suppress the immune system.  This is the reason I was prescribed Acthar.  It is an expensive one.  This one little vial represented 5 doses when I was at my max dosage.

Each month I received two vials which my insurance covered in full.  The cost of the two vials combined is $52,000.  No that is not a typo.  That would be $5,200 per injection.  Needless to say I couldn't have paid for the 4 months I was on this drug out of pocket.  Luckily I only had to do 2 injections per week.

I was also lucky enough not to get a great big moon face with this one.  I think it did help me gain back some of the weight I lost while swollen and on Prednisone which is a good thing.  Wait...what did I just say? :)

Just a little trip to the ER

As it happened, I got another virus.  I've had an upset stomach and a very mild fever since a few days before I went to Mayo.  Actually, my temperature was the only thing that wasn't normal when I was there.  I finally felt bad enough to take a little trip to the ER.  One benefit of being on immunosuppressant drugs was being sent to a smaller, private waiting area.  I was thankful not to have to wait in the usual holding pen with the dozen other patients and their germs who were there with me that evening.  Boy was this a familiar sight.

Notice the giant wad of self-adhesive bandage wrapped around my right hand.  The superstar nurse decided to draw one of my blood cultures from a vein just below my pinky joint.  I have a nice little bruise to account for it.  At least he did the other further up my forearm and then used the hole for my IV.  For the reduction in the number of holes he put in my arm, I will forgive the bruise.  Two bags of fluid, 2 fresh holes in my arm, $100, and 5-1/2 hours later, I was released to go home with a probably just a stomach virus.  My numbers all looked pretty good...no different from the previous week's numbers at Mayo with the exception of a slight increase in my BUN.  That is pretty typical of when I get dehydrated.  I'll chalk it up to good times while being immuno-compromised. 

Overdue Mayo Update

I saw Dr. Fervenza for a follow up appointment on July 30th.  My parents came out to stay with Morgan, and Michael and I flew up to Rochester, MN for a long weekend.  We were able to visit a friend from college and meet her adorable little one (miss you E!).  We also got the chance to meet two awesome ladies who are dealing with kidney disease.  It is always funny to meet someone in person after talking with them so much online and on the phone.  I feel like I've known these girls for a few months now, but on the other hand, I technically just met them.  Social interaction and making new friends when I was growing up didn't involve a computer.  It is a new experience for me, but one I am incredibly thankful for!! 

Dr. Fervenza was pretty excited by my labs.  He called them beautiful actually and kept grinning and crossing his fingers.  My 24 hr clearance results came back at 69mg.  I've gotten back spot rate checks in the last couple months that have been in the 80mg range, and that has been really exciting.  Anything below 150mg per day is perfectly normal.  Those were just spot rate checks that use a little math to calculate the 24 hr rate.  This 69mg result was the actual measured amount that came out of my body**.  Relief doesn't cut it.  I was spilling 27g at the end of March.  That is 27,000mg and 3 orders of magnitude larger!  My kidneys have recovered, and I am in complete remission.

I'm beginning a full blown medication taper now.  I am able to drop the lipitor, prilosec, lisinopril, and bactrim outright.  I am also taking too much Prograf and can drop to 6mg per day.  The injections I can stop in two weeks.  My discontinued medication box is overflowing, while my active medication box is nearly empty.

 

 

If my labs remain stable for the next 3 months, I can begin a 1mg per month taper of the Prograf.  This will be the tricky part.  If I relapse during the taper, the doctors can hopefully figure out the lowest does of Prograf to keep me in remission.  Granted staying on a drug that can itself be nephrotoxic for the benefit of remaining in remission for proteinuria is not optimal.  We'll cross that bridge and weigh those pro & cons when we get there I suppose.  For now, the important thing is that I am a completely normal person, and I have the lab results to prove it :)

 

 

 

 

**Side Note:  It was actually explained to me that the lab takes your, um, "clearance" and shakes it up in your little jug to get it nice and homogenous.  They then take a little sample, run their tests, and calculate the clearance using the total volume of the sample you provided to them.

The Uuuups and Doooooowns

Things have returned to the hectic lifestyle that is our norm.  I'm trying to get back to 40 hour work weeks, but germs seem to like to get in the way of that.  Every time I get close and think it's going to happen, I get sick and feel like I have to start all over again!  For example, I made it through our entire cruise without getting sick.  Michael started the trip with an ear infection, and by the end of the trip Morgan was complaining of an ear ache.  We were skeptical at first, but when she woke the first morning back from the trip complaining about her ear first thing, I called her pediatrician. 

Now on a side note, we were talking about how nice her doctor is on the way to the appointment.  She told me she really liked Dr Redwine but Nurse Ashley is not nice.  When I asked her why, she told me that Nurse Ahsley scratches her throat with a stick and makes it hurt.  I couldn't believe she remembered being tested for strep last fall.  I reassured her that we'd only be looking in her ears, and Nurse Ashley definitely hates to have to put the stick in her throat and only does it to make her feel better.  I even asked Nurse Ashley about the strep test, and she also assured Morgan we would just be looking in her ears.  Of course when Dr Redwine checked her ears, nose, and throat she noticed some splotches at the back of her throat and swollen glands.  What did that mean...?  Poor Nurse Ashley had to come in and put the stick at the back of Morgan's throat!  Only ice cream would do after that betrayal!  To top it off, Morgan's strep test came back positive...and so did mine.

This strep has kicked my butt!  It has taken a full week to get over it.  Today is the first day I've felt normal again, and that was after 13 hours of sleep last night!  Sheesh.  I'm trying to stay upbeat about it though.  If I can make it through the crazy lows of the last six months, I can definitely make it through this little dip.

My meds are slowly diminishing.  Check out the two boxes in the picture below.  I had to swap the boxes for my active and inactive prescriptions, because the inactive box was overflowing!  The pink ones are the pills I'm currently taking, and the black one holds my old prescriptions that I've been able to drop! Also note the giant pee jug I have to fill when we make the trip to Mayo at the end of July...fun times.

My heart actually dropped when I got a phone call just before our trip.  My doctor called me after some bloodwork.  He never calls unless there is a problem, and I usually hear from the nurse if everything is ok.  He laughed and said there was no way he was going to let the nurse give me the best news yet.  He had spoken with the doctor at Mayo, and they both agreed they wanted to start tapering my drugs.  I've completely dropped the Cellcept from my daily lineup.  I just did another blood draw and spot check today, and if everything is stable, I can cut my Acthar injection dosage in half.  That would be awesome, because it takes me about 10 - 15 seconds to get the full mL into my leg.  My hand is always shaking by the time I finish....I think it is a mental thing.

I'm excited about the end of July and going to Mayo for two reasons.  First, if my test results are still stable, I can drop the Acthar injections all together!  On top of having to stick myself, it has the lovely side effect of weight gain.  I have found that sticking myself hurts a little less than having Michael do it...thanks to you for doing it for me though baby!  Second, when we go to MN, I'm going to meet some really cool girls.  Two of them I've met online through this ordeal, and they are also dealing with kidney disease.  Another is the tiny little Anwyn Grace whose mom is my dear friend from UNC!  I'm bummed Morgan won't be with me to meet her.  Morgan travelled to MN when Erin was pregnant with Anwyn for the baby shower.  It would also be cool for Morgan to meet the kids of the girls I've met online.  Their kids are also 4, and one of them was born the day before Morgan...kinda neat!  She'll have fun here in OK with her Grammie and PawPaw though.

Off to find Michael to drag him along to yet another appointment this afternoon.  I'm sure my insurance company has been just thrilled by my 2012 portfolio to date!

Birthdays and Obstacles

Morgan turned 4 at the beginning of June, and I was thankfully well enough to be able to go on her Disney Cruise!  She warned me that if I wasn't better, I'd have to stay home...I warned her that if I wasn't better, she'd be staying home with me :)

Now true to our style, this trip wasn't without plenty of mishaps.  To kick it off, we sat down on the plane at 6AM, and I realized we had left the passports and M's birth certificate at home.  Michael had to jump off the plane before we pushed back to go home and get them.  He luckily got on a flight that put him in Florida by 5:30 that evening.  I had the pure joy of travelling with a very tired 4 year old while keeping up with all the carry-ons....her pillow, blanket, 3 stuffed animals, & backpack; my purse and the backpack Michael was originally carrying.  Man was I thankful that Disney took care of our checked baggage.  We finally made it to our hotel in Disney world around 2 in the afternoon.  We booked this hotel, because they had multiple pools with lots of water slides, a pirate ship, etc.  What I found out after walking 0.2 miles to our building and up two flights of stairs in the rain (after getting up at 4am CST I might add) is that the nearest food was in the pavilion another 0.2 miles away.  Morgan and I had shared some gum and some of the little cookies they give you on the plane.  Needless to say we were both a tad cranky.  She didn't want to walk any more, and I couldn't agree more after the morning we'd had...oh yeah, did I mention it was raining and Michael was somewhere over GA at the time.  I called trying to order room service only to find out it wasn't available for another 2 hours.  Dejected and a little perturbed, we headed out in the rain in search of some food.  Our options were calling for pizza (we'd have to walk the 0.2 miles to the bus stop, ride to the front office and back to pick it up), buying something from the vending machine at the bus stop, or walking to the pavilion.  We chose option number 3 and crossed the lagoon in the rain...oh lovely, let's throw some lightening in the mix...to the pavilion.  Let me just say I've had cafeteria food in high school better than the food we inhaled that afternoon.  After enduring a meltdown resulting from being told no she could not buy a new princess castle and more princess dolls (she has all of the above at home), we trudged back to our room through the storm to wait for Dad to arrive.  On the bright side, the rain did let up enough for us to take a freezing dip in the pool for about 15 minutes while waiting.  The fight to get her out of the pool was definitely worth her enjoyment while swimming...no really it was!  Dad was finally here...to the rescue!

Were were awaken by a disgruntled man wanting our bags to take to the ship.  Apparently they switched our rooms, and the note for us to have our bags ready to go by 8am went to the wrong place.  We had a nice breakfast in the rain the following morning, and then finally some sunshine!  We were able to swim in the pool, slide on the slides, and jump off the deck of the pirate ship before heading to the real ship. 

Wow what a line!  4,000 people is a lot of people to cram into a ship single file, but we made it on and tucked away those blasted passports.  We had dinner each night with two ofter families and discovered that Disney profiles their guests.  The other families each had only children who were also 4.  They were both from Texas and worked in the oil industry in some fashion.  The kids hit it off, and it was fun to bump into them around the ship.  Morgan loved the Mickey pool...a 2.5 ft deep pool in the shape of Mickey's head which (by the end of each day) was filled with a warm, cloudy mixture of chlorinated water, sunscreen, and piss.  I put my feet in, but Morgan and Michael enjoyed the experience of swimming under water...okay she was too cute doing this and absolutely LOVED it!  I'd like to point out that they each left the ship with an ear ache and strep.  Coincidence....I think not.  We found out that Morgan also loves rapids.  We got on the Lazy River at Atlantis Resort in Nassau (they define "lazy" in a different fashion in the Bahamas apparently, because this thing was M-O-V-I-N-G, complete with waves, rapids, etc), and she had a blast.  She was too short to ride the big slide on the ship by 1".  Michael and I did it...ehhh, she didn't miss much, but it looks cool.

Her favorite part was meeting Tinkerbell.  This trumped the 5 pack of princesses she met.  Amazing, I know.  She twirled with Cinderella,

showed Belle her dress,

charmed Snow White,

compared dresses with Tiana,

and learned to hold her hand like a princess from Aeriel.

Morgan introduced Tinkerbell to Ashley, and I was really happy by how much time Tink spent talking to Morgan.

We had after all waited for 30 minutes on her sparkly rear. Apparently, Cpt Hook was causing trouble in Pixie Hollow.  Peter Pan came to deliver the message in person.  Morgan was a bit intimidated by his, ummmm, animated gestures. 

We got to know the ship pretty well while becoming a Mystery Mouse Detective.  We solved the case of both the missing puppies and the stolen paintings. 

Michael and I even had a little time to ourselves.  Morgan loved going to the Oceaneer's Lab to visit the Pixie Hollow room and the pirate room.  We went to Remy's, the french restaurant up on the top deck aft.  It was a 9 course first for us both.  Three hours later we were so full, we had to turn down the cheese tray just before desert....what!?!? 

The trip was fantastic.  I wouldn't trade a thing for the super huge grins plastered all over Morgan's face the whole trip.

We made it back to OKC through the flight delays and storms.  Our bags made it back a day later....hey never a dull moment with this crowd.

The Zero Club

I had my first follow up visit today since being released from the hospital.  My neph was pretty excited to show me a slip of paper with a giant N for negative written next to protein.  "You're fixed, see ya next month," he said with a smile.  That's right, I'm in full remission and hanging on to all the protein I've been scarfing down for the last couple weeks.  We celebrated with a meat-filled dinner...beef tacos with a side of beef-filled chili rellenos and beef quesadillas.  Actually, now that I think about it, all that beef (and cheese) probably won't bode well for the cholesterol test I have to take first thing in the morning.  So much for getting rid of the Lipitor pill :)  He also told me I'm tapering completely off the prednisone over the next 4 weeks which is nearly as exciting as not losing protein...well almost.  Even the thought of putting that small 5 mg pill in my box instead of 1/2 of a 20 mg pill had me so excited I had to refill the whole week's worth. 

Now onward to the day I can throw that box away...

Home, sweet home

I've been home from the hospital since April 13th. It has been awesome to be home and away from the steady stream of nurses and doctors in the hospital. I am also finally at home in my body again! I can squat! It is amazing how much I took the ability to squat for granted. You have to squat to do almost everything related to a 4 year old, get things from the bottom shelf at the grocery store (that is where everything I need can always be found), tie shoes (assuming I can tie them that day), and honestly the list goes on and on. I LOVE being able to sit on the floor again. Crazy I know.

So far the swelling has remained minimal to non-existent, and I'm gaining back the body mass that I lost while swollen. My energy has rebounded, but I still get tired pretty quickly. Nothing a quick three hour nap (whaaaaat?!?!) doesn't take care of :)

Morgan has been really excited now that her mom's legs aren't so puffy anymore. Now I can run almost as quickly as she can as she has pointed out numerous times. We've had a few girl's only days over the last couple weeks which also gives Michael a break. She is a great little shopping buddy!

I'm slowly easing back into work. I have a tendency to want to go full speed ahead, but they're great about reminding me to take it easy. The biggest problem is that I haven't figured out I overdid it until I'm beyond overdoing it!

For the next 5-1/2 months I'll be taking acthar injections twice a week on top of my daily cocktails of other meds. I'm tapered to 10 mg of prednisone now and will hopefully be off it completely soon. I'm at full dose of cellcept and prograff and now that the disease is in remission, my cholesterol and BP are back at healthy levels and not requiring meds! Michael has been so kind as to volunteer to stab me with a needle two times a week. Last Friday he was tentatively trying to stick me in the gut. It hurts less here as I have the most "padding" ;) I requested we do a count to 3, so I'd know when to expect the jab. He agreed and started with, "one (he inserted needle here), two, three, here we go!" I was laughing so hard by the time he got to two as I had obviously felt something sharp in my stomach that the puncture wound bled for 10 minutes. So much for that plan. He said he thought the stealth approach might make it easier on me. Ok at least we laughed about it :)