Last clinical trial visit : FSGS Sucks

I went to Cincinnati today for what will be my last in-person visit with them. Standard stuff for my last visit....blood work, first morning urine, vitals....the usual.

I won't necessarily miss any of that in particular, but I WILL miss the people there. It has been so great to bounce things off of them. I can ask a ton of questions and they are always willing to spend the time with me explaining things. I'll not forget the explanation Dr. Goebel gave to me regarding how different diuretics target different areas. He even drew me a picture on a napkin!

Even today he was answering questions about Rituxan and Acthar for a friend of mine. It's not part of the protocol, but he took the time, and now I have a much better understanding than I did from the hours I've spent searching Google.

The great thing is that I know that I can always contact them if I have any questions. And I'll keep doing my best to inform people of the clinical trial.

I also had a bunch of labs done this morning. I had done a 24-hr urine yesterday, and for those of you kidney peeps that are familiar with the bonnet you put over the toilet (OK, it's probably only the ladies who deal with this), but I overflowed it TWICE in the middle of the night last night. It's 800 freakin' ml, and I overflowed the damn thing. Filled up the collection jug completely too. I am a peeeeeeeeing machine! I think I should be pretty thankful for this, because I'll be missing this when my kidneys start to go south.

I have figured out this whole diuretic thing a bit better though. I time it better, because I know that I'm gonna have to go REALLY bad within an hour of taking them, so that's helped a bit. Now, if I could just remember to take it earlier in the evening so I only have to get up once in the evening.

The swelling seems to be abating too. I just got out of a super-hot bath so I think that helped. I've been resorting to oatmeal baths because I had another allergic reaction to the compression stockings. I wore them Saturday, and the bright red band is visible again. Oatmeal baths provide some relief thank goodness. I emailed the company to find out more about the materials and to see if they had any hypo-allergenic options.

Another thing I love about Dr. Goebel and Barbara at Cincinnati....they didn't yell at me when I told them I ate nothing but buttered popcorn and tomato juice for 4 straight days :)

I wish this were Photoshop trickery : FSGS Sucks

But it's not. I have no ankles.

Sitting at a computer for nearly 8 solid hours is doing awful things to my body. My ankles do not appreciate this.

Enormous : FSGS Sucks

Why is this post titled "Enormous"?  Because, my dear friends, that is EXACTLY how I feel.  I have felt this bloat coming on for a few days now, and I've dreaded it.  I've had a good run of being "skinny" and I knew it had to end sometime, but I secretly harbored the hope that maybe...just maybe....the swelling would be merciful and forget about me.

I started to notice that my ankles were a bit larger on Sunday....then it was harder to bend my knees yesterday.  I woke up this morning and my stomach was a bit distended, which is odd considering how good it's been for the last 3 or 4 weeks, and today, I sat there feeling miserable as my rib cage swelled to the point of making my bra too tight.  It's hard to breathe right now.  It's been fa-reaking awesome.

I'm just wondering why this always seems to happen right before I have to go see my clinical trial folks (which I'm doing tomorrow).  This is the last appointment that I have with them in Cincinnati, and I was SO hoping that they could see me as "normal".  Well, hopefully they'll keep reading this blog after I'm done bothering them :)

And hopefully I'll feel better tomorrow.

Well that didn't take long : FSGS Sucks

I swear, my body does not like work.  Whenever I'm working, I'm swollen.  No work = sexy ankles.

It's been an absolutely blissful Christmas vacation in regards to my lower-extremity swelling in that it's been essentially non-existent.  But 2 days into working and it was back.  I took my shoes off last night and was surprised at the indentations in my foot...surprised because it'd been awhile since I saw them.  Sleeping didn't do too much to equal it all out, so now here I am, sitting at my desk, with these DAMN thigh-high compression stockings that are squeezing the crap out of my legs, just waiting to go back to the hotel so I can peel them off.

And I'm thinking that I should wear these on the plane tomorrow because I fly in the afternoon, which will only make it worse.  Suckage.

Checking in : FSGS Sucks

Hi everyone!  Long time no bitchin'!  HAAA!  My absence isn't due to the fact that I don't have anything to complain about, because I admit to having the type of personality that can ALWAYS find something wrong.  Sadly, I HAVE been sick since my very last day of work.  I've had it all....a classic calamady of maladies, including nausea, vomiting, diarrhea, sore throat and sinus infection.  But the one thing I haven't had is SWELLING!!!

Wooo hoooo!  I'm edema free right now.  I've no idea why, although I haven't been eating much of anything the last week and a half.  I've spent a LOT of time lying around doing a whole lotta nothin'.  Maybe that's IT!  The cure for my edema is EXTREME LAZINESS!  I wish I would've thought of this sooner!

Seriously, I feel like I have my body back right now.  I want to savor this because I don't know how long it will last, but I can FEEL the difference.  It's easier to walk, to breathe....my bras don't hurt when I wear them, socks don't cut off circulation to my feet....it's AMAZING!  Ahhh...it's the little things, isn't it?  I didn't ask Santa for a skinny Christmas, but I got one :)

I am starting to get a bit nervous about my new job and what's going to be required of me.  My last employer was VERY understanding when it came to my FSGS and the limitations it sometimes imposed...I'm not sure how my new employer will take it.  I'm still extremely tired, and I've been getting lots of sleep.  Hopefully it's because I'm recovering from all of the sickness, and not my true state.

And I'm trying to get all of my prescriptions from Express Scripts (which is the mail-order pharmacy that I was forced to use) to my local CVS for fulfillment until we move.  I'm pretty sure this is a futile mission, and I'll probably just end up asking my doctors to write new scripts, but I thought I'd give it a go since I'm pretty much stress-free right now.  Wish me luck!

And please pray for some kids fighting kidney disease right now.....Zachary, Zion and Donovan and Evan and Ciana and Macy.  These kids have been through hell and back, and they deserve and NEED our prayers right now.  Thank you!!!

Dragging : FSGS Sucks

It doesn't take a set of scales to know that I've gained all of the weight that was lost the last few days. I feel it in every step I take, and anyone can clearly see it in my cankles. And I was just getting comfortable again. It's my own fault, I guess. I've been lax about my meds these last few days, including my diuretics, so I guess I can only go a couple of days without them before this kicks in again. Good to know.

I'm done being sick now : FSGS Sucks

I don't think any of this is FSGS related, but this is my bitching forum, and I've got some bitchin' to do.

So last week was hard.  The stress leading up to my actual last day at Lilly was huge, but I knew that once I walked through the doors for the last time that I would be fine, and I was.  My dear friend, Rebecca, and I went out for some drinks after it and I was all better.  Unfortunately, I woke up on Friday feeling like death.  I was nauseous, had a headache and my skin hurt, AND I had a low fever, so I'm thinking it's some sort of bug.  A friend of mine thought it might be all of the stress too...the letdown of it all finally caught up to me, and there's probably something to that as well.  I tried to get up for awhile, but ended up back in bed by 5:00pm and stayed there the rest of the night.

Woke up Saturday to pretty much the same thing.  I showered, hoping that would make me feel better (no such luck). I was tired of lying in bed, so I moved myself to the spare bedroom and watched old movies all day.  No food sounded good...only tomato juice, grape powerade and popcorn.  I have absolutely no idea WHY it was only those three things but that's what it was.  Oh, wait...and CLEMENTINES.  Thank GOD for clementines this time of the year.

So I'm thinking that I SURELY will feel better on Sunday, but no.  Diarrhea.  Yippee.  I was able to force down some soup, more popcorn, clementines, tomato juice and powerade.  We all took a fabulous nap (sadly, during the Colts' first win of the season), and then I was in bed again by 9pm.

And so this morning, when I woke up and wasn't nauseous, I was pretty excited.  I had breakfast (first time in 4 days) but I was SO freakin' thirsty...I think I filled my belly with water.  I headed out to the mall to pick up a couple of things and was going to get a mani/pedi before my husband's work Christmas party tonight, but I started feeling so bad in the mall that I just headed home.  My tummy was so rumbly that I was afraid what would happen if I stayed!  That's probably TMI, but skip over that part if it offends.  I headed home, laid on the sofa and called the babysitter we had lined up and my husband to let them know that I wouldn't be going to the party tonight.  I feel so guilty, but there was no way I could've sat through that dinner...all of the smells would've sent me running to the bathroom I fear.

So Izzy and I have been hanging out tonight, making cookies for her Christmas party at daycare.  My taste buds are totally off so nothing tastes good or even remotely normal.  I'm trying to force down a salad right now because I know I've got to get SOMETHING in my belly or else I won't be able to sleep.  I just feel awful.  So bloated, gassy and distended as to be uncomfortable.  And now the sneezing has started.  And sneezing for me only leads to one thing...a sinus infection (eventually), so I've got that going for me.

HELLOOOOOOOOOO????!!!  I've got THINGS to do.  PEOPLE to see!  LUNCHES to have!!!  MANICURES to get!!!!  Can someone please FIX this?

HTML Challenged : nothing to do with FSGS but it STILL sucks

I think I spend an inordinately LARGE amount of time "tweaking" this blog whenever I decide to change it, mostly due to my lack of knowledge about the whole HTML/CSS crap.

If anyone cares, or feels generous this giving season, PLEASE HELP ME.

There is no rhyme or reason : FSGS Sucks

I feel like all I ever do on this blog is bitch and complain...but hey, it's my blog and that's EXACTLY why I started it, right?

But...WOOOOHOOOOO...I'm not complaining today!  And do you know WHY???  Well, it's because I didn't remember how beeee-utiful my feet were, but now I do, and do you know WHY????  Well, it's because, inexplicably, I have no swelling.

This just proves to me that my diet has little impact on the swelling.  I have eaten like complete shit lately...it's not as easy when my husband is away, and he's been traveling for the past 2 weeks (just got home on Saturday)...  Now, I realize that if I were to suck on salt cubes, then that would probably cause some problems, but hey...eating like shit is apparently good for my swelling

 Yes, last week = tree trunks.  Today = skinny minny

I even got to wear my new Ugg boots that I've been coveting in my closet since September....

Oh yes, my friends...I'm bringin' sexy back.  Oh no..wait...no I'm not...I've got colitis too, and it's making it's presence known lately.  I guess I can't ever everything :)

And OMG...has anyone else's skin been itching lately????  The last 3 nights have been absolutely hellish for me...I'm scratching all night...so much until it bleeds (yuck, right?).  I had this when I was a little kid too, and eventually was diagnosed with eczema.  I don't have the kind that causes visible rashes or changes in the skin...it's silent, but debilitating.  And THE ONLY way to make it go away is an ice pack to numb the pain and something stiff to drink to sleep through it.  Tonight I had a soak in an oatmeal bath...keep your fingers crossed that I don't want to rip my legs off and beat myself over the head with them....mkay???

FSGS Sucks...it just does

Izzy and I headed to Cincinatti on Tuesday for what I thought would be my last in-person appointment from the clinical trial.  Luckily, I get one more visit with these amazing people!!!

It was a good visit...did some psychological surveys, turned in the rest of my drugs that I couldn't take due to stopping the Humira, and just talked.  Barbara is A-MAZING with Izzy...she had her eating out of her hands within minutes.  And I LOVE that these people talk to me...to see how I'm doing both physically and emotionally.  I truly, truly believe that they care, and I can't tell you want a difference that makes.  THEY care about my quality of life.  As soon as I start talking about my leg swelling, Dr. Goebel hops on the computer to see how high I can go on my diuretic dosages.  Mind you, he's not the one that prescribes these, but he gives me information to take back to my nephrologist to help me.

The swelling is getting old.  I'm tired of talking about it.  I'm sure you're tired of hearing about it.  I think at some point pretty soon I'm going to have to come to the realization that this is not going away...no more drugs or anything is going to "fix" it.

Dr. Goebel commented again on how well adjusted I am, considering how ugly this disease is.  I thanked him, because, for starters, everyone wants to be acknowledged for being normal :)  And secondly, it gives me the motivation to keep going.  This doctor has seen the worst, and he knows the struggles that we go through, so that makes the meaning much more.

I'm embarrassed to say this, but here goes, because I'm wondering if anyone else has felt this way.  Ok, so I've got this shit disease that's getting progressively worse.  I've exhausted drug therapies, tried a clinical trial, spend 100% of my time swollen and achy...that all sucks.  But I know people out there who have it SO much worse than me.  However, I often wish that these things would just get it over with and fail.  My neph's main goal is to keep my kidneys as long as possible, and I'm thinking, "Why the hell would I want to do that???"  I mean, this is no picnic, people.  I put on a happy face, I bitch and moan and get it all out, but I still suffer.  Daily.  The extra water weight I carry around sometimes becomes unbearable.  I feel sluggish, wiped out.  I'm frustrated that I can't wear the clothes/shoes that I want to.  I'm angry because I'm too tired to work out, which leave me little outlet for stress.  And, let's face it, these buggers aren't going to get better.   I often wish they would fail and I could just get a new kidney.  There.  I said it out loud.  I feel better.  I don't care if it's rational...I don't care what anyone else thinks.  It's honestly what I think.

I think Dr. Goebel gets that.  He sees the changes in kids after transplants, so he knows the possibilities.  Now, I'm not going to do anything ca-razy...no worries there.  I'm not an idiot.  Let's just get this over with.

Judging by my lab results that I received this evening, maybe my kidneys are listening.  I compared my numbers with those from 6 months ago, and everything is moving in the WRONG direction (well, wrong if I want these kidneys to get better...guess I should clarify after my confession).


                                             May '11 Dec '11 Units            Ranges
BUN                                         16              23  mg/dL            6-19
Albumin                                     1.9             1.7             g/dL            3.8-5.2
Blood Creatinine                        0.7             0.9            mg/dL           0.4-1.1
RBC                                         4.02             3             mill/mol          4.2-5.4
Hemoglobin                               12.1            9.1            g/dL              12-16
Hematocrit                                35.6             28              %                37-47
LDH                                         250             312            U/L            118-273
Urine Creatinine                        56.8                            mg/dL
Total Protein (random)             274.6                           mg/dL             0-12
Protein/Creatinine Ratio             4.8                             mg/mg           0.0-0.1
Creatine Kinase (CpK)                                599           U/L             30-223

Now, I know that these numbers don't mean much to most people, so I'm gonna try to explain it as easy and as simply as I can.

BUN - measures nitrogen (urea) in the blood.  Urea is a by-product of metabolism of proteins in the liver, and the kidneys should remove it.  An increasing BUN means that my kidneys are not able to remove it as well, indicating decreasing kidney function.
Albumin - essentially, the reason I'm swollen.  The vessels in my body can't hold the water in, so it leaks out into my interstitial cavities (hence, the ridiculous edema).  Lower albumin means more swelling.
Blood creatinine - measurement of waste products in my blood
RBC/hemoglobin/hematocrit - all related to red blood cells in the blood, indicating that I'm anemic now
LDH - measure to check for tissue damage
Creatinine/urine numbers - harder to explain, but you can see from the ranges that I'm WAYYYY out of 'em
CpK - another tissue damage indicator....another HIGH OUT OF RANGE number.

This all sucks. I don't know what it all means, and I probably won't have any clearer answers when I show my neph.  He'll blow it off and be vague, and say something like, "Yeah, they're getting worse". Which will be TOTALLY not helpful to me.  Piss on it for tonight...I'm going to bed.

Please listen : FSGS Sucks

I had my last training session for NKF mentoring tonight, and one of the trainers read part of this poem.  I looked up the rest on Google because this poem captures what I've felt so often when dealing with FSGS.  Please take the time to read, and share.  I don't know the author, and apparently neither does Google, but if anyone finds out, let me know and I'll credit the author :)

Please Listen

When I ask you to listen to me
and you start giving me advice,
you have not done what I asked.
When I ask you to listen to me
and you begin to tell me why
I shouldn't feel that way,
you are trampling on my feelings.
When I ask you to listen to me
and you feel you have to do something
to solve my problem,
you have failed me,
strange as that may seem.
Listen! All I ask is that you listen.
Don't talk or do - just hear me.
Advice is cheap; 20 cents will get
you both Dear Abby and Billy Graham
in the same newspaper.
And I can do for myself; I am not helpless.
Maybe discouraged and faltering,
but not helpless.
When you do something for me that I can
and need to do for myself,
you contribute to my fear and
inadequacy.
But when you accept as a simple fact
that I feel what I feel,
no matter how irrational,
then I can stop trying to convince
you and get about this business
of understanding what's behind
this irrational feeling.
And when that's clear, the answers are
obvious and I don't need advice.
Irrational feelings make sense when
we understand what's behind them.
Perhaps that's why prayer works, sometimes,
for some people - because God is mute,
and he doesn't give advice or try
to fix things.
God just listens and lets you work
it out for yourself.
So please listen, and just hear me.
And if you want to talk, wait a minute
for your turn - and I will listen to you.