Ouch : FSGS Sucks

A nice, HOT soak in an Epsom salt bath is the only thing that sounds good right now. Damn you Jillian Michaels!!!!

Because I don't have any more excuses : FSGS Sucks

I don't like the way I look.

I'm certainly not exactly happy with the way I feel.

And I have no excuses for it anymore.

So I took the first step today....I started working out again.  I already hurt.  It was hard as hell to breathe, but I finished it.  And I'm going to do it again tomorrow.  Because I don't have any more excuses.

LOTS o' docs! : FSGS Sucks

So, in the last 8 days, I've been to 4 doctors.

Last Thursday:   GI doc
Monday:  Clinical Trial doc
Wednesday:  Kidney doc
Friday:  Family doc

And, lucky me, I get to get another pap next week on account of the abnormal pap from a few months ago.

So, let's recap everything, shall we?

My GI doc is pretty sure I have IBS (irritable bowel syndrome) as well as collagenous collitis, due to the fact that I have fairly regular nausea nearly every morning, along with all of my other symptoms.  So, he's had pretty good experience with his patients taking Xanax in order to "calm the bowel".  I know...sounds strange, right, but I'm game to try it, as long as I don't become some sort of numb zombie.

Then on Monday, I had my last in-person appt. with my clinical trial doc,which I've already written about.

Since that last post, I've gotten my lab results back, and they pretty much suck.

24-hr proten:  12865 mg/24hr
Albumin:  1.5 g/dL
Creatinine:  0.9
Potassium:  3.1 meg/L
Calcium:  7.5 mg/dL
Cholesterol:  401
Triglycerides:  220
HDL:  58
LDL:  300

Holy hell.  LOOK AT THAT CHOLESTEROL NUMBER!!!  And I'm already taking Lipitor.  THIS number scares the hell outta me.  I don't wanna die of a heart attack!!!!  I've always had a higher-than-normal cholesterol number because my HDL was always so high, so I didn't freak out all that much if it was over 200.  But for some reason (damn kidneys) it's dropped by almost 100 points and my LDL is skyrocketing.  I kinda knew this was happening, but it's scary to see the actual numbers.

My nephrologist kinda wrapped everything up.  Nothing's changing too drastically.  With a creatinine of 0.9, I still have good kidney function (and it was 1.09 back in October, so it's getting better).  The albumin number is extremely low (as indicated by the bold EL on my lab sheet), and that's why I have so much swelling...nothing new there.  My proteiniuria is relatively stable (October it was 14880), but my potassium and calcium are dropping....likely due to the extraordinary amount of diuretics that I'm on.  No matter how many tomatoes I eat, it's just not going to be enough.

I went to see my GP this morning to go over my cholesterol results and create a plan of action.  So now, I'm going to add another cholesterol med to the mix (Zetia), double my potassium, religiously take my calcium pills that I routinely forget about, and switch my Lexapro for Xanax.  He prescribed an extended-release form of Xanax since I'm using it not necessarily for the mood properties, but to calm my gut.

The doctor's office today doesn't have electronic records yet, so I wanted to show you the size of my file.  My nephrologist file is like this too (they're in the middle of switching over), but it's twice as thick.  I was a little embarassed when the elderly woman in front of me had a smaller file than I did.

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 :)