Clinical Trial week 8 visit : FSGS Sucks

I had my 8-week follow-up appointment in Cincinnati on Tuesday. I was fortunate enough to have lots of company on this trip. My little sister is coming on vacation with us so she's staying with us for a few days before we leave. And, of course, if Auntie Bri is coming with then Izzy is too. And I also had my friend, Emily, and her 6-month old son,Will, came along too.

It was a rough drive because Emily and I stayed up WAY too late the night before making baby food for Will, and I was exhausted, which is why I'm so glad that I had everyone to entertain me and keep me awake.
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The visit was good and quick. They took my weight (gained 3 kilos....damn water retention), height, blood pressure (100/63) some blood and a random urine. Dr. Goebel came in and did a physical exam, which consists of him asking me how I feel and me bitching about my swelling:). He always says that he's seen worse, but for the life of me I can't imagine...ok, I guess if my skin starts to split then THAT would be worse, but it's still pretty crappy.

He talked about metrolazone and how it works differently than lasix (lasix works at the loop and metrolazone works on the proximal and distal regions). Okay, I may not have the regions named quite right, but the general idea is that they can work nicely in combination. My neph wasn't a fan of it, but I bugged him enough yesterday to prescribe it to me. He's very worried about me becoming dehydrated and ending up in the hospital (and judging by the sheer volume of pee overnight I can see why :).. And from what I've read, I need to watch out for hyponatremia, which is too little salt in the body. It's a tenuous balance it seems, but I feel fine so far. I'm drinking plenty of fluids but no reduction in the edema yet.

My last set of labs (taken at week 2) were:
Creatinine 0.7 mg/dL
Random urine 274.6 mg/dL
Albumin 1.9g/dL

This weeks labs aren't great...in fact, they're pretty terrible:
Creatinine 0.8
Random urine >700
Albumin 1.6

And here's the strangest part... I did a 24 hr urine on Sunday...labs came back from that. The first time did a random test instead of a 24 hr, and it came back at 304. When I got the 24 hr results back today, it showed that my protein had dropped by 50%!!! From 16500 to 8767.

I wish I could be excited, but the huge discrepancy between the tests that were run only a day apart just leads me to more questions. Again, I'm still not sure what it all means, and that's what I really need right now...some understanding of the direction that my kidneys are headed. I'm frustrated...again. Every time I get labs done, I hope for answers. But lately, all I get are more unanswered questions.

Thank You, Trista!!! : FSGS Sucks

I feel so rude since I haven't given Trista a proper "Thank You"!

So thank you, Trista, for writing a post on my blog! Isn't she awesome? I "met" her through Facebook, and having her write on here made me realize that one of my deepest wishes has come true. When I went through this the first time, I was DESPERATE to meet someone like me, but there wasn't anyone that I could find. I suffered through that basically alone with my awful thoughts.

But this time around it's totally different. I have a wonderful community of kidney peeps, both men and women, that I've come to rely on, and it's made a world of difference in my mental state.

Thank you to all of the other people with shitty kidneys...you mean the world to me!!!

P.S. If anyone else feels like telling their story on my blog, or just needs an outlet to vent, PLEASE let me know. I'm not selfish with this thing...I want us all to benefit if we can!


- Posted using BlogPress from my iPad

Introducing..... Trista

So thankful to Jenn for letting my vent on her blog! I was whining on FB the other day due to side effects of medication and she offered a guest appearance on her blog ( oooohhh doesn't that sound glamorous, guest appearance!)! Soooo my name is Trista and I am a 26 year old who has been dealing with Nephrotic Syndrome for 12 years now, I have been diagnosed with Minimal Change Disease, similar to FSGS, difference is my kidneys are not (yet?) that damaged. I may still outgrow this disease. The only thing I have been outgrowing thus far is my clothes! Anyway I have been treated with prednisone, cyclosporine, lasix, and ACE inhibitors. My biggest battle is with the... SIDE EFFECTS!!!! My most recent gripe is with a new disease I have come to acquire, Gout. It can be caused by lasix and cyclosporine, as well as weight gain (which is caused by prednisone and the disease itself). I had been having intense pain in my feet, especially my right foot and then it got really bad in my right foot, I could barely walk. I was waking up at night from the pain, blood tests showed my uric acid levels were super high and I was put on colchisine, which has yucky side effects, I can not keep anything in or down while I am on this med. The pain went away, but I had no other options because the other drug used to treat gout is non other than prednisone. So I am doing better the pain subsided, and I am no longer taking the colchisine. All these damn "wonder drugs" and the side effects suck suck suck suck suck! I do believe I am a strong and positive person but I get so frustrated with the side effects of all the drugs, it really drives me bonknanas. Last September I was hospitalized because another drug I was taking, a statin used to treat high cholesterol ( caused by the Nephrotic Syndrome). caused me to have rhabdomyolysis . My muscle fibers were being broken down by the medication, it happens in about 5% of the people who take it. My muscles were being broken down and I was in pain and could not even chew or stand up without assistance, I almost had to be put on dialysis. Thankfully I recovered pretty fast, but there went my muscle tone, boo, two thumbs waaaay down! See the freaking side effects are just as bad if not worse than the disease itself! I love Jenn for her honesty and the opportunity to express my feelings, the feelings of a crazy prednisone popper! So thank you darling. One more thing I would just like to say if prednisone was in human form I believe it would be a her, a crazy, bitter, vindictive, her who was very intelligent but hateful and I would love nothing more than to punch her in the throat!

My inspiration : FSGS Sucks

I want to tell you all about Macy...this beautiful, brave little girl who has become my inspiration for fighting this damn disease.  It's late right now, and I've got to get up at the crack of dawn to be at work for my own blood draws/turn in 24-hr urine tomorrow morning, so I'm just going to show you this...but I'll be following up with more Macy talk very soon....



And Kelly, if you're reading this, you're an angel too!