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.