Sooooooo tired : FSGS Sucks

I've been doing a little sleep experiment this week, to see if I'd be less tired if I got more sleep.  I'm here to report that it's been an epic fail.  I didn't think it was possible, but I've actually not felt this tired in A LOOOOONG time.  I've been going to bed early...getting around 7-8 hours of sleep a night, which is a HUGE improvement for me.  And I'm freaking exhausted.

I drag my sorry ass outta bed around 7:15am (alarm set for 6:00am) and stumble to the shower.  This, in itself, is a departure from my normal routine.  I used to be a night showerer, mainly so I could get more sleep.  But now, the only way I can wake up enough to drive is to shower in the morning, so that's why I do it now (that and the whole night-sweats :).  I don't even bother to put on mascara because my eyes are so puffy (kidneys or allergies, who knows).  People at work see  my tonsils more than anything because I'm ALWAYS yawning...on the elevators, during meetings, eating lunch...ALWAYS.  I barely remember the drive home.  And when I do get home, I've got to do some manual labor because we're getting new carpet on Saturday.  By 9:00, I'm so tired I can hardly stand it, and I head off to bed (tonight's a little later than normal, but I had a lot of blogging I wanted to do).

I could complain awhile longer, but my fingers are even tired, so I'm going to go to bed.  Now.  Nighty night ;)

Some good news : FSGS Sucks

Remember how I was worried that my work leave wouldn't be approved?  Well, it was APPROVED!  I just got the email notification, and I'm so relieved.  Just wanted to share a little bit of good news instead of bitching all the time :)

Since I've been home : FSGS Sucks

Changes are a comin' ; : FSGS Sucks

I had a wonderful vacation.....I truly did. And I feel that in large part, it was due to two things: constant activity and metolazone.

I pushed hard before I left and got my neph to finally prescribe it to me. I had talked with him about it before but he didn't want to give it to me. He's pretty conservative in his thinking, which I appreciate most of the time, and he's really worried about further damaging my kidneys or me ending up in the hospital because of dehydration. At my appointment in Cincinnati two weeks ago, the neph running the trial asked me why I wasn't on it ( after complaining for the gazillionth time about my swelling). He sat down and drew me a picture of how it works in parallel with lasix and treated me like an educated person. I told him about my neph's reluctance, and he seemed surprised. It's a drug he prescribes frequently to his pediatric patients and didn't understand why my neph was hesitance. Honestly, I didn't either. Several of my kidney peeps told me about it and how wonderful it was for them. So I was armed with a bit more information and immediately emailed my nurse to ask her to ask him to write me a script.

I didn't hear from him for a couple of days, but I knew that if my neph wouldn't do it then my clinical trial neph would.  I stopped by my neph's office on Wednesday afternoon to drop off my FMLA medical cert form to him and he ushered me in. He wrote me the script but was CLEARLY not happy about it. He told me to be super careful about maintaining my fluids so I didn't get dehydrated, and generally seemed kinda shitty, which I just hated. I mean, I'm only looking for something to help me freaking bend my ankles again!!!!

Anyway, I started taking them that night, and MN do they work fast. I seriously had to get up to pee twice overnight, and I peed A LOT! Didn't get much sleep, which wasn't great because we were trying to start driving at 7:00am (yeah, funny idea for a non-morning person like me:) but I could tell that something was happening, and that made me happy.

It took about two days before the I saw the effects, but that drug is nothing short of miraculous to me. Seriously, I had ankles, arches and ten individual little toes. I could point my feet again! I could sit on my knees on the floor! Ecstatic doesn't begin to describe it. I had a few issues with dizziness, but that was about it, and it allowed me to have a great vacation. For the first time in awhile I felt normal and pretty. I wasn't embarrassed to show my legs because they weren't freakishly swollen. I ran around on the beach with a confidence I haven't felt in a long time.

And now I'm home. And I'm not taking metolazone right now because he wants me to only take it temporarily. What that means, I'm not sure, but I have an appt. in two weeks to figure that out. What it means right now is that the swelling has returned, and I'm once again a freak. I did get 4 days of normal shoes, but it looks like I'm back to wearing the 4 pairs of shoes that fit me.  And sitting back at my desk every day for hours on end is not helping it either.  I was getting a pedicure tonight, and the guy actually asked me what happened to my legs....clearly it's pretty obvious that it's not normal.

All of this has pretty much just left me depressed and tired.  My intermittent leave is running out on the 20th, my neph is being a pissant about signing a new form, which I TOTALLY don't understand because he keeps telling me to elevate my feet as much as possible and take it easy.  Not sure how I'm supposed to do that. 

Here's the thing...I've had so many people/doctors tell me how incredible they think it is that I work a full-time job, have a toddler at home, try to run a photography business, raise money for nephcure..blah blah blah...all with a kidney disease.  And the thing is that I HAVE been able to do it, but it's not been easy, and those intermittent days have been a lifesaver for me.  They allow me to stay home, sleep, rest, elevate...rejuvenate, and without them I feel like I'm going to be tired for forever, and any little sniffle is going to turn into pneumonia.  I'm being dramatic, yes, but that's where my brain is right now.  What am I going to do if my doc doesn't sign the forms OR my FMLA isn't approved???

Did you hear the news??? : FSGS Sucks

I go on vacation and all sorts of crazy things happen.  They found a cause!!!!  Holy shit they found a cause of FSGS!  And my friend, Jennifer, who is also suffering from FSGS, was the first to tell me via a text message :)  I LOVE LOVE LOVE technology!!!

This article in Nature Medicine provides details, but even I have a difficult time figuring out what the hell it says.  All I know is that the very last sentence of an article I read on Nephcure.org reads, "Patients with FSGS and other glomerular diseases will benefit from our finding very soon."  And that, my friends, is all I need to give me a little hope.

Ok, I'm off to do a Yoga/Pilates fusion class..I know, sounds all new-agey and crap, but it's really just that I physically feel so good after coming back from vacation that I gotta see what my limitations are.  I want to post a little about my vacation, so I'll try to do that tonight when I get back....

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!

Peeeeeeeee! : FSGS Sucks

I'm getting all set up for to do a 24-hr urine test tomorrow.  I had a dream the other night that my protein had gone down, so I can only hope that it means something.  The last appointment I had was in March and my 24-hr urine was 16.5g.   Yes, that's a lot.  Back then my swelling was pretty minimal, so I'm curious as to what my neph will say when he sees my legs and feet now.  Granted, if he shrugs it off as if it's normal, I'll be pissed.  Even if it IS normal to him, it's not to me, and I hope he can sympathize with that and see if there's anything else he can do.

My intermittent leave runs out next month at work, and it makes me so nervous.  It's been such a relief to have those days available to me when I just can't get going...when I just NEED to rest and catch up.

We're getting ready to go on vacation, and I'm really worried that my swelling will have a negative impact on my fun.  We're driving to Atlanta and then Hilton Head...that's about 13 hours in a car, which is going to do awful things to my extremities.  I'm going to HAVE to wear those compression stockings, I think.  I got a pair that were toe-less because I hate how they crunch up my toes.  Unfortunately, the toe-less kind pushed out some of the swelling to my toes and became extremely painful, so I think I'm gonna have to deal with crunched-up toes rather than swollen ones.

I'm absolutely dreading putting this body in a bathing suit and going out in public.  For one thing...I'm 20 pounds heavier than I'd like to be, and I'm jiggly.  It's just gross.  The worst part, though, is how swollen my legs are...they just look so deformed to me.  It looks like I'm part elephant or something.  And I DON'T feel like I'm exaggerating.  I started taking the lasix again tonight in the hopes that it will have some effect on my swelling before we go.  Wish me luck tomorrow!

I miss... : FSGS Sucks

...all of my pretty pretty shoes that no longer fit on my chunky feet.  I'll admit it..I'm a shoe whore.  I LOVE EM LOVE EM LOVE EM.  And I love HEELS, especially.  That was always my favorite part of getting out those summer shoes that had been packed away all winter.....trying on all my purty shoes.

Alas, this year, it is not to be. I spend a lot of time right now trying to find shoes that will even FIT!  And I'll admit that I'm having less than stellar luck.  I normally wear a size 9 1/2 or 10..I've even tried on size 11s and they STILL don't fit.  Of course, there were a pair of $90 flip-flops that were heavenly, but even I'm not THAT crazy.  So, I'll continue to search and bitch about it.

I did, however, score some awesome Chuck Taylor's...surprisingly, these fit.