Clinical Trial visit : FSGS Sucks

I can't believe it's been a week already since my last clinical trial appointment!  It seriously feels like I just went there yesterday!  And once again, I was reminded why I like them all so much at Cincinnati Children's Hospital....it's because they're FANTASTIC!  Ok, I can't speak for every single person that works there, but I can easily say that for everyone I've met because of this clinical trial.

I love Barbara because she's:  nice, intelligent, reads my blog, can answer my questions, completely in charge, makes me feel appreciated for participating in the trial, gives Izzy prizes, etcl.

I love Dr. Goebel because:  he listens,  he explains things in a way that make so much sense (must be from usually working with children :), is my metolazone advocate :)

I love Christie because:  she remembered giving me my first injection, she makes me laugh, and I think we'd be best buds outside of the hospital.

Ok, back to the trial.  I brought my first morning urine, and got the requisite blood draws/vitals.  Barb then gave me the rest of my supplies that I'll need until my next appointment (meds, syringes, alcohol swabbies, pregnancy tests, etc.).  Joacim and Izzy came with me this time too, so we spent some time chatting about how awful Barb's evening before had been (flooded basement....I DO NOT ENVY :).

Dr. Goebel made his way in too.  He had a very busy day as there were two transplants happening that day, but he managed to squeeze me in.  He checked everything out, including my swollen ankles, and that's when I started pegging him with questions about metolazone and increasing my dosage.  You see, it's not working as well as it did when I was on vacation...I mean it's essentially not working at all.  I wanted to increase my dose, but considering the last visit I had with my neph, I was nervous about even asking before I had a chance to talk to Dr. Goebel about it.  Sadly, I'm wishing I was 18 again so he could be my doctor.  He's that great.  Anyway, he pulled up info about metolazone and explained the dosage I'm on and how it wasn't a big deal to double it, which still puts me well within the normal dosing. He also helped explain to me why I've been craving salt and water so much.  I seriously thought it was all in my head, but it's not.  it's all about the amount of water in my blood and my body's thirst mechanism.  It's registering that I'm thirsty because there's less water in my blood since it's leaking out, which makes my brain think I'm thirsty.  Here's a great article I found that helps to explain the edema and whatnot.   He also gave me some great tips to help out:


1.  Restrict my fluids - I can't remember the EXACT reason why, but I'm trying.
2.  Restrict my salt - RIDICULOUSLY difficult, but I'm working on it.
3.  Double my dose of metolazone, that way I'll have evidence if it works to go back to my neph with.
4.  Change lasix dosing - I usually take 40mg in the morning and 40 at bedtime, but lasix is actually a 6-hr drug, meaning there are several hours in the middle of the day where I'm not getting the most benefit, so he suggested I split my dose into 3 different doses to give me the most benefit.
5.  hot baths - again, gonna have to research the EXACT reason, but there was something about hormones and how they'll work when submerged in hot water.
6.  swimming - the pressure of the water helps to normalize the fluid retention in my body, plus the exercise is great for me.

Armed with this information, I feel better.  Sometimes that's all it takes...knowing that I might have a chance at changing some of the things that are making this disease unbearable for me.  I can't imagine having this level of swelling until my kidneys fail...that could be YEARS!  And Dr. Goebel said that that's why FSGS sucks...and I couldn't agree more.

I'm trying not to panic : FSGS Sucks

And this doesn't really have anything to do with FSGS  per se, but this is my outlet, so here goes.

I've been looking into getting an IUD since July.  My doc said that they like to do it within the first 3 days of my cycle.  I couldn't do it in August because I was on vacation, and I couldn't do it in September because we were in Minneapolis.  I started my cycle on Saturday, so I called my gynecologist first thing this morning to schedule it.  When I was on the phone with the scheduler, she asked me if I had gotten my last Pap results back, and I realized that I hadn't.  She said that she'd look them up and call me back. 

She did call back, but not with the results that I had expected....she told me that it was abnormal.   And I'm freaking out.  I've never had abnormal pap results.  NEVER.  She said that the doctor messed up and never got the results sent out, so she's glad I called.  Seriously???

Of course, the first place my mind goes is cancer....because apparently kidney disease and colitis aren't enough  And I start thinking about Izzy and Joacim.  And then I start to spiral.

My brain is working overtime on this.  I'm still getting the IUD tomorrow, and they're going to do another Pap test to see if it's changed since Friday.  I should have the results back by next Wednesday, so I'll be pacing the floors until then.

I talked to my dear dear friend, Emily, tonight, who is always a voice of calm and reason.  She talked me down from the ledge I was on,  I really don't know what I'd do without her...seriously.  She's coming down to Riley to take her son for an appointment with a specialist (pray that all goes well and normal), and then we're going to take our kids to the zoo to spend the day. 

I have so much to do at work, and we've got our big Lilly Day of Service on Thursday (which I'm a leading a team this year) so it's probably not a great time to take a day, but it's so necessary for my mental well-being.  Besides...I'd just sit there spacing out all day anyway.

Pooped : FSGS Sucks

No, this isn't a post about my colitis issues (although those are not so fun either) but I got so tired of writing the post title "Tired" that "Pooped" was something different.

I stayed home from work today because I have been UTTERLY EXHAUSTED the past couple of days.  I slept until noon this past Saturday (thank you, Joacim) but it just isn't enough to try to catch up on the weekends sometimes.  I slept until noon again today, and I'm STILL tired.  I think I could lie on the sofa the rest of the day, floating endlessly in and out of sleep.

Funny thing is that I think the need for sleep indicates something for me.  My voice has turned quite manly in my slumber, and my eyes are, once again, puffy and swollen.  Super.

And I was just telling Joacim the other day how good I've felt lately.  I had been feeling like I have a lot more sustained energy lately, but that's all gone today. I thought if maybe I did some yoga that it would trigger some energy...still waiting to see if I can summon up enough energy for a downward-dog...gotta be careful that my eyeballs don't pop out of my head!

Why I love my friends : FSGS Sucks

Because as soon as I put the call out for donations, I raised $815.  So far.

But I'm not done begging yet.  I want a t-shirt...and that only comes with $1000....

Yeah, I'm greedy like that, but I also want donations to help find a cure for this damn disease.

Our 2nd annual Nephcure Walk is going to be held on October 22, 2011 at Garfield Park, on the southside of Indianapolis.  I'm soliciting donations AND friends to come and join me.  It will be a small affair, but a very important one for me.  I had dear friends and family attend last year, and I hope to see the same and MORE!

Click on the red thermometer to the right to sign up and donate!

Overwhelmed : FSGS Sucks

I think I've recounted a gazillion times about how tired I am. Here's a list of what's going on in my life right now:

1. Mom to a 3-year old
2. Wife
3. Full-time job leading a $1.4 million project that is being implemented into next year.
4. Getting our home ready to sell.
5. Finding a new home.
6. Team captain for Lilly Day of Service
7. Organizing 2nd annual NephCure walk (which is October 22, btw)
8. Owner of 3 animals
9. photographer
10. self-appointed life-documenter

Thankfully our home is FINALLY on the market

Http::/www.6713.isnow4sale.com

We're having an open house this Sunday, so hopefully we'll get some interest from that.

I mistakenly thought that things would calm down a bit once that happened, but it doesn't appear that's the case. As I'm writing this, I'm on a plane, flying to Minneapolis to look for houses. We had a mad dash around the house this morning to make sure it's sale-ready (which is no easy feat at 6:30 in the morning).

It's all becoming too much. I'm forgetting appointments, feeling like I can't take any time during the work day to go to the chiropractor (which I desperately need right now). I forget to complete paperwork...still need to call for the mortgage pre-approval that I was SUPPOSED to do on Wednesday but forgot. I'm overwhelmed.


- Posted using BlogPress from my iPad

Metolazone update : FSGS Sucks

Sooooooo.....down 9 pounds since Saturday morning!!!!

Woooooooooooo hoooooooooooooooooooooooo!!!

Still, it's going a bit slower than the last time, but I'm guessing this is, in part, due to the fact that my ass has been firmly planted in front of a computer A LOT recently.

WTF??? : FSGS Sucks

After yesterday's crying session, I knew I was in for trouble.  My eyes started to get really dry and irritated.  By 9:00 my left eye looked like this:

 And by bedtime, it was this:

 I got a LOT of sleep last night...it was about 11:25 before I got it, an the only reason I got out of be was because we had an appointment with our realtor.  And when I went to the mirror in the bathroom, THIS is what I saw.  Holy.  Shit.

My left eye was swollen nearly shut...so much water under the skin that it actually pushed up my eyebrow (which is why they look so crooked).  Yeah, this sucks.  And even now...nearly 12 hours later, it's not a whole lot better.  I didn't even leave the house today.  The ONLY good thing about today was that little metolazone pill I took this morning.

Neph appointment today : FSGS Sucks

I'll admit that I went to my appointment in a fighting mood about the metolazone, so maybe that started it off bad.  I told my neph that I wanted to talk about our last interaction because it left me a bit uncomfortable.  I felt as though he didn't think I was capable of taking care of myself while taking the metolazone.  And after experiencing the wonderful outcome of this drug (at least for me) I was angry that he hadn't given to me sooner.

I could go into a great amount of detail, but I've got to process it all a bit more first.  He aid things like he didn't know I was moving to Minnesota, and that he didn't know I was taking Humira.  Clearly, he's wrong, because we had conversations about both.

He was behaving as if somehow I'd hurt is pride...about the clinical trial maybe (again, total crap because I actually printed out the study and gave it to him LAST SUMMER to read...he did nothing, so I had to take matters into my own hands).  The way he said things led me to believe that he's pissed that some other doctor is providing me information..I guess that's how I'll break it down.  At this moment, I feel it's all total crap.  At the end of the day, isn't my HEALTH and WELL-BEING the most important???  Sadly, that's not how I felt when I left that appointment.  I left in tears....crying, sobbing in my car...clearly disappointed by the discussion.  I feel as though, since he knows that he can't do anything drug-wise to change the course of my disease, that he pretty much poo-poos anything that I bring up.

I don't understand what it is about some doctors, but clearly there are some issues.  He did something similar when I went to the Cleveland Clinic (only not as bad) which really threw me off because he actually suggested that I go for a second opinion....kept saying he was fine with it.  In all actuality, I don't think he WAS fine with it.  He probably would've been fine if I had followed his suggestion to go to Ohio State where he did his training, but I didn't think that was going to do me much good.  I wanted a brand new set of eyes on my health, and he told me several times that he had already consulted with Ohio State.  Why on earth would I waste my time if they already agreed with everything he said?  It didn't make sense to me, which is why I pursued Cleveland Clinic.  Looking back now, I feel he almost got some pleasure when I was pissed about how that whole thing went.

And now that I'm working with Cincinatti Children's Hospital and Dr. Goebel, and HAPPY with how it's going, he's not OK with it.  He was like, "I don't who this Goebel guy is".  Again, crap, because I told him several times who he is (btw..he's the Medical and Clinical Director of Kidney Transplantation).

When I mentioned Minnesota, he mentioned something about Mayo (which I already planned pursuing).  When it came up again about having another child, he made some snarky comment about how maybe my fancy doctors at Mayo would tell me something different.

Ok, as a doctor, I feel that this was TOTALLY inappropriate.  I truly don't feel like I'm reading anything more into this than what is truly happening.  Why wouldn't he be happy that I'm in a clinical trial and doing what I can to a) help myself and b) help others?  Why isn't he happy that I'll have a opportunity to be seen at Mayo Clinic, which has one of the WORLD'S largest group of nephrologists?  I just don't understand. I'm confused, shattered, and so sad.

I feel like I just lost someone working for my side.  I'm glad I got a prescription for metolazone, but the victory feels pretty empty.

Glad it's over : FSGS Sucks

This work week, that is.  It has been a DOOZY!  Tuesday night and tonight I worked until 7:00pm on some training...last night until 6:00pm...heck, I can't even remember Monday.

We have this ergonomic software at work that tries to prevent ergonomic injuries by forcing breaks during periods of heavy usage.  I can't even tell you how many of those breaks I had this week, bu it was a LOT.  And there are daily usage limits set up as well, and I've hit it every day this week by 3:00pm.

And when I finally have gotten home from work, I've had to do shit around here to get the house all ready.  To say that I hate cleaning out my pantry would be an understatement, and that's how I spent Tuesday night.

And to add insult to injury this week, I'm getting sick.  I've been sneezing, coughing, and have a killer sore throat right now.  It hasn't helped sleeping so little this week (now I'll take a little ownership on this one...I just don't wanna go to bed early enough) either.

But tomorrow I'm off.  I'm getting my hair colored (thinking something red and funky), have a chiropractic appointment/massage therapy, and then my appointment with my nephrologist.  It sounds like a busy day, but I'm thinking that it's a HUGE improvement over every other day this week.

UGG : FSGS Sucks

Ugg.  I can't fit into them.  No, seriously..I can't fit them over my swollen ankles, or rather I should say that I can't bend my ankles enough to shove them in.  And anyone that has ever worn, or even tried on, a pair of Uggs, must realize how big shit is in order to make this an impossible task.  I was just trying them on..seeing if I could do it.  Epic failure.

It's been a rough week, especially at work.  Both feet are enormous..my calves are so tight from all of the water...my feet tingle now, and they itch like crazy.  I'm at my desk for 8+ hours a day..solid, which isn't helping, but my project won't wait for me to feel better, so I'll do what I can, which is pretty much propping my fat feet up on my desk for a few minutes when the tingling gets too bad.

And another thing that I'm finding that's both weird and troubling is that it's taking forever for wounds to heal.  Little scratches like this one are taking weeks

Oops...that's not a great photo, but here's another one.  You see, I got in a fight with a box grater on Saturday.  I was trying to make homemade coleslaw...needless to say, the box grater won.

So it's been 5 days now, and it STILL hurts like crazy.  It's very red and swollen, and it throbs whenever I take the band-aid off, so I always keep one on.  The point I'm trying to make is that, in the past, I was a pretty quick healer.  By now, this would've been a scar, but now, for some reason, it's still a pretty fresh wound.  Can anyone tell me why this is?  What is it about kidney disease that could be causing this, because I've got no clue.

End of my rope : FSGS Sucks

I am sooooo nearing the end of my rope right now.  It's a daily battle just to make it out of bed, and every day I look forward to the day where I can just sleep.  All day.  Uninterrupted.

Since we got back from our wonderful vacation, it's been a whirlwind of "things to do" at home.  First, it was trying to empty out 3 bedrooms and an office in order to prepare for new carpet which was installed this past weekend.  For anyone that REALLY knows me, they know that this was a huge struggle for me.  I don't live well in a state of chaos (mental OR physical).  And having everything in our home crammed into our living room and sunroom drove me crazy.  Seriously..I couldn't even get to the back door of the house.  And the day of the carpet installation I felt like a caged animal...caged because we had to put a gate up in the kitchen to contain the dogs, and because the kitchen was the ONLY place in the house that had a place to sit down (besides outside, and it was 90 degrees that day, so no go there).  And I pushed it VERY hard, physically.  Friday night and Saturday morning were spent getting the last few things out of the rooms, like our bed.  And once the carpet was installed, we spent the rest of Saturday trying to put everything away, which we mostly accomplished.  Sunday we did yard work, trying to clean the place up to get photos taking for the upcoming sale.  I could go on and on, but you get the picture.

I'm tired.  So tired.  And I can't sleep when I finally get to lie down at night.  And if I DO get to sleep, then Izzy inevitable wakes up at 2:00am screaming OR I have to go to the bathroom from all the damn useless diuretics I'm taking, one or the other, or both.

Work is crazy.  I spent HOURS sitting in front of my computer, which makes my legs swell even more.  Yesterday, but the end of the day, my capri pants were actually stuck on my calf of my left leg because they were so swollen.  There's just no end in sight to this.  Everytime I think I can take a day off from work, someone schedules a meeting.  Everytime I come to work for an early meeting, I get here and see that it's been rescheduled.  I swear, I'm wallowing in my self pity (but that's pretty much what this blog is for ;), but I just can't seem to catch a breather right now.

I keep thinking that, once the house is on the market, it'll slow down, but I'm fooling myself.  Then it's a constant battle of keeping it ready to show at a moment's notice.  I'm working a lot, and working late, so if this happens and I need to get outta here, I'm not sure what I'll do.  We've got to get the dogs AND the cat out of the house (and the cat is no easy creature, judging by the battle we had to undertake to put him in his carrier before vacation).  And we still have to FIND a new house, which means a trip to Minnesota.

I need a mental rejuvenation, at the very least.  And for me, this means being able to go out in the evening, drive around in the country and take photos of the big, beautiful evening skies that I've been seeing lately.  But I can't do that right now...can't afford to spend that time, and that makes me feel even more down.

And the swelling.  It's just monumentally bad right now.  It's like carrying two milk jugs of water around right now...literally, with the amount of weight I've gained since I got back from vacation.  I have an appointment with my neph on Friday, and we're gonna have a "come to Jesus" about the metolazone.  I need it.  Plain and simple.  I need it to gain some traction back in my life.

Whine, whine, whine...I know...but I just need a break.