End of meds, cankles and a clinical trial!

Let's review, shall we?  Living with this kidney disease has been....let's just say "challenging" as of late.  I never know what physical freakiness I'm going to wake up to anymore, which might be part of the reason that I dread waking up.  Every single morning starts with a slight headache and swollen feet.  Thankfully, the headaches have been easing up, but the swelling is not.

Sadly, most people can't even tell that I'm living with this crap.  Look at this picture below....can you tell that they're swollen?

Can you tell now?

Nearly every frickin' day I deal with this...some days are worse than others..I just never know.

Some good news, though, is that I'm done with prednisone...and pretty much any other immunosuppresant in thee near future.  I will slowly start to feel more like myself again, and THAT'S something to look forward to.

And some GREAT news is that I started screening for a Clinical Trial.
How interesting is it that one of the drugs in the study is produced by Eli Lilly?  I found this out today and thought that was pretty cool.  I'll be going through Cincinnati Children's Hospital for the trial (which is funded by NIDDK).  The overall duration of the study is 5 years with 178 patients (hopefully :) with the trial part of the study lasting 6 months.  Today was the screening, and then there will be 2 baseline appointments, and then the trial begins.  Today was a lot of blood work and medical history, as most of the visits will be.  Hopefully I can do some of this through work to cut down on travel and missed time at work.  I met the regional study coordinator and the lead Nephrologist, and they are both fantastic!  So friendly...and so far I've got nothing but positive things to say (which is MUCH different than my frustrating experience at Cleveland Clinic).  I'm excited and cautiously optimistic.  Even if this study doesn't help me, the data gathered can be used to help others like me, which is also incredibly important.  We'll be waiting for IU Pathology to get my biopsy slides to Cincinnati, and then we'll go from there.  I hope to get today's lab results by Friday.  Knowing my numbers makes me feel like I have the tiniest sliver of control.

I'll keep updating here as the study progresses.  Wish me and the study luck!

More funky funk

I got my most recent test results back last Friday.  Needless to say, they were surprisingly bad.  My protein has shot up from 7.6 grams to 16.5, my albumin is around 2, and my creatinine is 1.06.

I've been mulling this over for days, and I've gotten nowhere.  Don't know what to think....don't know what to do...don't know even what to say anymore when people ask.  I say "I'm waiting for my kidney's to fail", and they look at me strangely.  But it's true.  That's what I'm waiting for at this point.  This damn FSGS is PISSING ME OFF!  I'm not sad (thank you Welbutrin and Lexapro)...but I'm PISSED at everything this disease has taken, and will take, from me.

I've stopped taking Prograf.  It was preempted by the awful (yet completely unsurprising) experience with our new mail order pharmacy company that my insurance/work is shoving down my throat).  I'm weaning off of prednisone still...have about another month or so to go.
The most ridiculous thing is that the doctor I saw at The Cleveland Clinic LAST NOVEMBER FINALLY called me...on Friday.  He may be a fantastic nephrologist...top of his field, but his bedside manner could use an overhaul.  Needless to say, after reading my biopsy samples, he agrees with everything that's been done so far, but would recommend me going back on prednisone.  When I asked him why, after going on it already at 70mg/day for 6 months, did  he think trying it at 125mg/every other day would yield different results, he said, "I don't know if it will.  But why not give it a try.  It's safe".  He seems to be completely convinced that I will experience no side effects by taking it every other day.  Here's the thing...he doesn't have one shred of data to back that up.  There is absolutely NOTHING that can convince me that I won't experience those awful side effects.

I've spoken with my nephrologist at length on Friday and Monday, and I still have no answers.  And I'm tired of it.  Just tired.  Every time I do labs I think, "This is it.  Now I'll have an answer."  And it NEVER EVER happens.  There's always something else they (they being the medical establishment) throws out there.  My neph is no different...I really like him as a doctor, so please don't miscontrue...he's just doing his job.  He said, "What if it works?"  And that's the kicker.  That's what they keep throwing out there.  And that makes people like me feel like fools if we don't try ONE MORE THING.  And if my kidneys fail then it'll be all my fault because I didn't try this toxic medication ONE MORE TIME.  I freakin' hate it.  I've tried the drug, it didn't work, but I'd be CRAZY to not try it again...doesn't make a bit of sense.  So what the hell am I supposed to do?

The only reason I'd even think about trying it again is if Joacim would agree to having another baby.  That's the ONLY reason at this point.  Remember earlier when I said that I just felt that I'd be OK through pregnancy?  Well, that's shattered.  Done.  Gone.  It would be irresponsible at this point to try to bring a healthy baby to term....LOTS of risks to a fetus...let alone me.  And this drug would have to provide a miracle for me to even think about trying to conceive.  It was different when I was spilling 5 grams, but 16.5 is a whole different level, and it's just not safe.  So I'd have to take prednisone for 6 months (assuming it put me into remission, then wean off for another six months, and then wait another six months to see if I remain in remission.  Do the math.  I'd be pushing an age where I'm not sure I'd be comfortable having another little one.  I know that physically it's possible, but maybe not for me.  Kidney disease takes a lot out of me, and it's unlikely to get better.
So, again, what the hell am I supposed to do?  I'm looking to anyone for some perspective...not ADVICE.  What am I missing?  How can I interpret this differently?  Please understand how terribly grateful I am for Izzy...I cherish that little girl, but please also understand how I grieve for the brother or sister that Izzy will never have.  That doesn't make me a bad person...that makes me human.

Now my neph is talking about putting me on blood thinners because my risk for clots is rising.  This can't be good.  I can't bring myself to look up the drug for fear.  I just can't deal with it right now.

The depression is growing, but I'm aware of it.  I'm going to start seeing my therapist again...try to make sense of it all.  There's just so damn much to think about, and I need some help sorting it out and putting it in to perspective.  So Judy, if you're reading this, expect a call very soon :)

And if anyone has some perspective...some sage words...some happy thoughts, please, comment here.  I could use a rally :)

Nephrologist appointment today

Writing these updates about my doctor's visits is a little like torture sometimes.  It's hard to keep everything straight in my head, and then to try to regurgitate it all in a readable manner sucks.  Medical jargon sucks. 
How do you think it feels when I Google my newest medication and the first thing I see is this:

Sadly, I don't even bat an eye at these anymore.  I'm just taking it all as it comes.  Why the new medicine?  Well, the current ones aren't really working, but this one works with a different mechanism...what that is I cannot describe or pretend to understand fully.  I DO know that this is a diuretic, which might help with my swelling.  It might also help lower my blood pressure.  A BIG negative is that it can increase my potassium, which means I'll need to watch how much potassium I intake in my diet...and this includes things I LOVE like bananas and tomatoes.  Sucks.  Sucks.  Sucks.

Here's the scoop from today:

1.  My protein went from ~10g to ~7.6g.  Good, but not really good enough.

2.  My cholesterol is at 342.  Yes, 342....no typo there.  I'm on a very low dose of Zocor to control my cholesterol.  We're going to increase the dosage of this because it's rising, but we have to be careful because the effect of statin drugs can be multiplied when mixed with my other meds.

3.  My albumin is at 2.3.  Normally, it's been between 4 and 4.5.    Here's a little blurb I found that gives a fairly technical explanation of what albumin is:   

"Albumin is essential for maintaining the oncotic pressure in the vascular system. A decrease in oncotic pressure due to a low albumin level allows fluid to leak out from the interstitial spaces into the peritoneal cavity, producing ascites."

Albumin helps keep fluids in your vascular system.  When albumin is low, fluid starts to "leak out" which causes swelling.  You might remember me posting about my ankle swelling?  Well, this is likely the reason.  To make a long and complicated explanation short, it means that I'm slowly becoming malnourished.  So, my doctor has suggested that I start drinking high-protein Boost drink supplement to add more protein to my diet.

My doctor says that I'm starting to show the signs of nephrotic syndome:  rising cholesterol, lowering albumin, edema, protein >3.5g.  

Ok, was there anything good out of today?  Well, yes...I've lost a bit of weight (although not as much as I had hoped, but isn't that pretty typical too? :)  My kidneys still are functioning just fine (hard to understand sometimes why I'm going through all of this if they're OK, but we're trying to prevent/postpone the inevitable).  The best news is that I'm going to start weaning off of my prednisone, which is WONDERFUL for me.  That means that, hopefully, the weight will start coming off faster.  I'm watching what I eat and exercising 5 days a week, so that should happen quicker I hope. Plus, once off the prednisone, then I can start weaning off of the crazy pills, and that's great because then the night sweats will subside.  These are the most miserable thing I'm dealing with right now, so to have that go away would mean quite a lot.  I wake up frequently and have to change clothes..sometimes put a towel down to sleep on because my sheets are soaked...flip my comforter over because it's also soaked through and it feels gross to lay in bed.  Yes, probably too much information but it's there...it's real...it's my life right now.

This is my pile of prescriptions.  

I had to get all new ones from my doctors because my wonderful insurance is now forcing us to use mail-order pharmacy for the cost savings.  I'm all for cost savings, but in this case, it's at the incredible expense of good service and convenience.  It take 2 weeks to get scripts filled, that is unless I want to "expedite" more order for $20.  Scumbags.  I've TRIED to use mail-order pharmacy...really tried, but if there is ANY sort of a problem, their customer service is just not going to help. Plain and simple.  The ATTITUDES that I ran in to when I used it last was unbelievable AND unbearable.  So it's worth the extra cost to me to be able to get what I need.  ARGH........

This is the list of instructions from my doctor that I left with

It reads:

1.  new medication -> spironolactone 25 mg daily

2.  increase simvastatin to 10 mg daily (please call if you begin having muscle aches, dark urine)

3.  start weaning prednisone 2mg every two weeks -> call when you're down to 2mg daily

4.  labs in 1 month

5.  see you in March.

So, new drug, watch my potassium, cut down on tomatoes, wean off of prednisone, and pee in a jug in another month. 

You know that saying "Just what the doctor ordered"?

Well, I'm thinking my doctor didn't order this, because I could tell he was surprised by my test results too when I saw him for my follow-up appointment today.  There's no rhyme or reason why my protein is going up...nothing's changed for me physically...he lowered the dosage of one of my meds so I get fewer headaches, but that's about it.
So, what's the plan for me?  Well, I guess I'm going to continue taking tacrolimus (which is the immunosuppresant that we're using in order to stop the progression of the kidney disease) for 2 more months.  Why 2 months you ask?  Because 1 study done in 2004 with a whopping 16 patients used 6 months as a baseline minimum.  This is what I'm dealing with...I mean, in my engineering brain, there's no logic to this.  I've been on this medication for 4 months, and my protein has gone up from 4.7 grams to 10.6 grams.  I don't understand why I'd stay on this medication, but I will...just because.  I'm also getting my blood pressure medications increased.  My doctor wants it so low that I'm nearly falling on the floor (sounds great, right? Friends, please keep an eye on me...this freaks me out).
I'll do another 24-hr urine test in January, and if the results aren't what we want (in otherwords...SOME reduction in my protein), then I'll stop taking the tacrolimus and slowly wean off the prednisone again.  At that point I'll be out of options, and will be waiting for my kidney function to decline.  We'll just try to maintain my blood pressure as low as possible in order to ease up on the work my kidneys are doing.  The good news (albeit still a bit confusing to me) is that my kidney function is really good.  I'm only at Stage 1 of kidney disease (out of 5), so I've got a ways to go, but there is no telling how quickly I'll get there.  My kidneys are working very hard to filter everything right now, and with 10 grams of protein loss, they're function will decline faster, but how fast that is is hard to tell.
And I didn't even discuss the 2nd baby option, as it just seems like it's not an option and I can't bear to hear/deal with that right now...just too painful for me.
What I'm most frustrated about, I think, is that I know no more now than I did before I went into my appointment.  There's a plan, but not a great one.  No one has any idea of what's going to happen to me or when.
And I'm angry.  I thought about it today, and Izzy's life growing up could very easily be clouded by my disease.  How do I explain to her that Mommy's sick?  How do I deal with that?  It's not fair to her...I wouldn't wish this on anyone, but especially not my little girl.  No, I'm not angry...I'm pissed.  I'm pissed because my doctor doesn't get how freakin' tired I am...don't tell me it's not because of the protein spillage because you're data says it's not...LIVE IN MY BODY FOR A WEEK and tell me it's not related.  It's an indescribable tiredness, that's all I can say.  He could be right about one thing though...and that's that I've been dealing with a chronic illness for 5 years...seriously for 18 months, and it's starting to wear a little thin.  The limbo...the waiting for the other shoe to drop...it's exhausting.
Thankfully, my doctor knows that he doesn't know it all, and has suggested (again) that I get a second opinion.  He trained at Ohio State, and he's going to set me up with one of his mentor's there to discuss my case.  Thing is...he's already seen my files.  He's not going to tell me anything different.  My doctor is hoping that he'll know of a study or clinical trial that I could get involved with..My question, and Joacim's, is "Can't he just call him and ask?  Rather than me driving there to hear the same schpeel?"
So, in light of that, I've put in appointment requests at both The Cleveland Clinic and Mayo Clinic.  I find it hard to believe as I type these words that my condition requires Mayo, but I guess it does.  My grandpa went to Mayo when he was fighting cancer...THOSE are the patient's that I think of when I think of Mayo, but at this point, I'm out of options.  They may not be able to tell me anything different, but it's a whole different set of eyes on my problem, and both centers have EXCELLENT reputations, so I gotta give it a shot.  Still seems  ridiculous though.

The trifecta (but not in a good way)

This day has been a challenge....a challenge to see any good in ...a challenge to "see the bright side" of anything.

I got my 24-hr urine test results back, and they were not what I expected...they were worse.  I went from spilling around 5.5 grams of protein to spilling 10g..WHILE ON MEDICATION.  I was pretty sure that it hadn't gotten better (not to gross anyone out, but a sign of protein leakage is foamy urine...and I mean foam that doesn't disappear) but my worst fear was that it had gotten worse.  What does this mean for me???  I have no idea.  I have an appointment on Monday, but I'm going to sit here and stew about it until then.  And I think anyone that knows me knows that I don't deal well with limbo.

Shortly after receiving my test results, I got a message from my Grandma to call her back as soon as possible.  Ok, for me, that's like the dreaded phone call in the middle of the night.  I knew it was about Dad because I had spoken to him earlier this morning.  He called to see if I had my test results back, and he mentioned that he was having chest pains and was going to all the doctor when they opened.  I'm not sure of the exact details, but eventually he made his way up to medical at work, they took his blood pressure and wanted to all ambulance.  I guess his blood pressure was somewhere around 160/120.  But Dad doesn't roll like that...no ambulance for him, so he called my stepmom who picked him up and took him to the emergency room.  He's at the hospital right now for observation...they did a CAT scan on him and discovered that he had an enlarged aorta.  At 5.5cm they need to replace it, and he's at 4.5 right now.  Not exactly sure what the plan is...they're still trying to get his blood pressure down.  I'm just waiting to see what we need to do.  I really want to take Izzy up there so he can see her...so he can remember why he needs to do EXACTLY WHATEVER THE DOCTORS TELL HIM TO DO, because he is the most stubborn man I've ever known.

And then, after all of that, I'm at home getting Izzy dinner, and Joacim calls me to tell me that he was rear-ended about a 1/2 mile from home.  He was stopped waiting to turn left, and some woman rear-ended him.  Luckily, he saw her with enough time to take his foot off the break, or he might have suffered some whiplash or something, but he seems to be fine.  The poor Volvo, however, is not.  Thank goodness the chassis is built like a tank, but not so much for the bumper.  It's literally hanging off the back of the car, with the sensors dangling.  It's a very very sad sight.

So, there's my trifecta.  They say bad things come in threes, do me and my family better be done.

You know...I'm kinda pissed about all of this right now.  Numb too...a little.  I mean, I've tried sooo hard to cultivate good karma. I recycle, clean up my dog poop, donate to charities, photographed 5 charity events this summer....and this is how karma responds????  I don't get it....I JUST. DON'T. GET IT.

Tired

I'm tired of being tired.

I'm tired of hearing myself talk about being tired.

I'm just......tired.

Seriously..the last couple of weeks my arms have felt like lead. I actually get tired when I'm putting Izzy's hair up in the morning, and I think this is most bizarre since I've been going to yoga for 5 weeks now and have been feeling stronger with every passing week.  But it doesn't seem to last long.  I get a great buzz from my workout on Wednesday night, but by Thursday morning I'm draggin' ass again.

I hate being this size physically.  I won't say "fat" because I know I'm not...I'm just not happy with my current size and I want desperately for it to go away.  I hate watching what I eat because I'm terrible at it.  Well, let me re-phrase that..I'm great at watching it, I'm just terrible at stopping it.  I have a great day and then I cave at night and ruin it all.  It's like self-sabotage or something.  I hate feeling this way, which makes me depressed, which makes me wanna eat, which makes me hate feeling this way...etcetera, etcetera.

I'm pretty sure I'm depressed...I mean, who wouldn't be, right?  I've got this chronic disease that has some pretty devastating long-term consequences, but that, of course, cannot be determined for sure.  So it's like I live in this strange limbo...always waiting for the next blood or urine test to tell me something.  I've got one this weekend, as a matter of fact, and it's a biggie.  Essentially, at this point, if my protein level hasn't decreased after this 24-hr urine test, then I'm pretty much SOL..just waiting for my kidneys to poop out on me.  Unfortunately, I kinda think this is the outcome already, but I'm still hopeful.  What would be worse for me (and the possibility of having another baby) is if my protein level actually goes UP.  Then I have no idea what'll happen. 

I'm scared....scared of the results and the implications of those results.  I don't even remember what it's like to be me...to be normal.  I read about all of these people not letting their disease identify them, and I get that, but it doesn't feel like I've had that same experience.  If I had gone into remission quickly like the last time, then I might be singing a different tune, but that's not the case right now.  This IS defining a large part of my future and my family's future.  And it absolutely sucks that I don't get a say in all of this...that there is absolutely nothing that I can do (but if I read one more silly article about how baking soda can cure kidney disease then I think I shall FREAK OUT ON SOMEONE).

And all of this anxiety/depression is making me want to shop.  To buy myself pretty things to make me feel better.  It works for a short while :), but I can't do it all the time (especially since I just went SERIOUSLY shopping and came home with a purrrrrrty new Wrangler :).

So, anyone have any pearls of wisdom?  Any inspirational little nuggets that they'd like to share with me to drag me out of this funk?  Cause I could use em. 

On a mission....

This post is about me, or more importantly, my kidney disease and the effort I'm undergoing to raise funds for research.  I'd like to shed a little light for everyone on what this disease means to me on a daily basis in the hopes that you'll share this with anyone you know and encourage people to donate to the cause.

So, let's see...I think I'll first start with my list of pills that I take every single frickin day....

1. tacrolimus (Prograf) - This is an immunosupressant used to try to stop my kidneys from leaking protein
2. Prednisone - the only reason I can figure that I'm taking this AGAIN is because all of the studies done with tacrolimus also included prednisone
3. Losartan (Cozaar) - a blood pressure medication also used in aiding my kidneys to lessen protein leakage
4. Doxazosin - another blood pressure medication used to treat my high blood pressure, which is caused in part by the tacrolimus (I was getting severe headaches)
5. Buproprion (Wellbutrin) - because all of these drugs make me edgy
6. Lexapro - for those episodes where I want to SCREAMMMMMMM.
7. Lansozaprole (Prevacid) - heartburn
8. Sulfamethoxazole (Bactrim) - an antibiotic I take all of the time because, when on immunosuppresants, I am much more susceptible to infection (and having a little girl in daycare means I'm a MAGNET for infection at this point)
9. Singular - not kidney related, but another pill nevertheless
10. Lo-ogestral (birth control) because if I were to get pregnant while on these drugs, it would be a very very bad thing
11. Calcium - because these drugs leach calcium from my bones
12. Multi-Vitamin - because they're just good for you
13. Fish Oil Pill - heart healthy (and there's NO WAY I could eat that much fish to compensate)
14. Probiotics - because the antibiotic that I'm on has wiped out all the good bacteria from my system, so I'm taking these in order to try to restore some balance
15. melatonin - used to help me sleep

 Ok, so that's my list...at least I THINK that's it...it's getting harder to remember it all, quite frankly.  I think it's sad that Izzy has to see me taking all of these.   She's actually started to help me get my pills together every week....she's so happy when she hands me one of the bottles (and it's the only way to keep her from actually messing with the pills themselves).

There are soooo many things I hate about this disease, but the uncertainty is the worst.  I feel like I'm in a state of suspended animation...just waiting for the next set of labs to see what my future holds.  Did my protein go down?  Is the level of meds in my blood too high?  How's my liver doing, by the way?  Will I have to keep taking this, or am I out of options?  Will I get to have another baby?  Will Izzy get to be a big sis someday?  When will my kidneys start to decline?  Next year?  10 years?  Never?

Sadly, there isn't a definitive answer for the last few questions.  My doctors, at this point, don't want me to try to have another child...they say it's just too risky.  As for my kidney function...no one knows what will happen, or when it will.  Sometimes I wonder if it would've been better if I had never known at all, especially if I'm okay for 20 more years.  Life has not been what I imagined it to be since being diagnosed...it changed, and I feel as though I'm being cheated.

Unfortunately, there just isn't enough information out there about this disease.  And that's why I'm pleading with you to please consider donating to my fundraising effort for Nephcure.  We are holding a walk on October 16th, 2010 at Broad Ripple Park.  The walk is more symbolic in nature than physical, but it's so important to raise awareness about this disease and what Nephcure is doing to try to find a cure.  The NephCure Foundation (NCF) is a non-profit organization dedicated to finding a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS), which is the disease that I was diagnosed with most recently.

So please, consider donating to my cause.  I would love nothing more than to see you all out there supporting me on October 16.  You can register to walk with me at this link.  You can sign up and create your own team and spearhead your own fund-raising effort.  Or, if this is more than you have time to take on right now, no problem.  Just add yourself as a member to my team (Team Lilla Loppan).  There is no cost to register for the walk, but a donation to the cause is very much appreciated.  If everyone donated $5 or $10 dollars, it really starts to add up.  Please donate whatever you're able to.  This money goes directly to Nephcure to fund research.

We have a very small group here in Indiana right now...we've had a hard time getting it off the ground, which is why it is so important that this walk be held.  We need to raise awareness...we need to build a foundation for the future.  We need to be there as a source of support for all of the people that suffer from these diseases and their families.  I've met some wonderful people through this organization...people just like me. It's made me grateful to realize that I'm not alone, but also sad because there are truly so many of us out there.  The only way to find a cure is to fund a cure, so please, consider donating.  Thank you!

Save the Date! Nephcure Walk Indianapolis - October 16, 2010

Nephcure is the only organization in the world (that I know of) that is seeking a cure for my disease, FSGS, which is why I've become fairly passionate about it.  We've recently started a chapter in Indianapolis, and while it's having a rough time getting off the ground, I'm hopeful about the support it can bring in the future.

As part of the chapter becoming a reality, we're holding a Nephcure walk on October 16, 2010 in Broad Ripple Park.  I don't think we've nailed down the time quite yet, but I anticipate it being in the morning...when  I know I'll post it here.

Anyway, I'd love to have you be a part of this event.  You can form your own team and fundraise, or you can be a part of my team.  And if that's too much of a committment right now, hey, I've got something else...just donate to my team :)

Normally, I'm not really comfortable in the "asking for money" arena.  But this is for me.  This is for my future.  This is for Izzy.  There may not be a cure found in my lifetime, but hopefully there'll be a cure someday.  Looking at videos on YouTube of little kids suffering from this makes me realize that I'm pretty lucky to have the knowledge and maturity to understand it and "deal" with it.  But these little kids...wow....they just have to grow up to fast because of all of the "adult" things they're dealing with.  It's quite sad, really. 

So I'm asking any of you that can spare it to please donate.  There's a link to the right on this blog that you can click and donate to my team.  I'm also including a link in this post.  Thank you!!!

Here's the link to my donation site :  http://www.firstgiving.com/jenntrunk

Here's a video on YouTube that I found that gives a nice description of my disease in terms that anyone can understand...

HOLY CRAP.......medications aren't cheap

How do people without insurance survive?  I mean, I know that this sounds terribly naive, but I guess I am...selfish in that I've never put a ton of thought into what it would be like to not have it.  I believe everyone should have access to it, and I'm glad to see we're trying to finally do something about it in America.  I'm very lucky in that I haven't been in that position since I graduated from college.

But tonight, I think I got my first real sense of it.  I picked up my new meds tonight, and, with my insurance, I paid $107.  Without insurance, it would've been $969!!!!!  That means that every pill I take costs $15, which is STAGGERING.  That's an awful choice that some people have to make....take meds and go into unrecoverable debt, or don't take meds and have your condition possibly/probably get worse.

I'm glad that I've never been in that position, but I thought I might be with this new medication.  It's not FDA approved for my disease, and sometimes insurance companies won't cover that, but thankfully they are.  Can you imagine?  I mean, if this works, I'll be on it for at least 18 months.....that's $18,000!!!!  Holy.  Shit.

When it rains, it pours.......

Wow...not a good week/month to be a member of my family, healthwise, that is.


1. My Grandma is having surgery tomorrow to replace a vein in her leg (how awful does THAT sound!)
2. My Dad is having an angiogram on Thursday because he has congestive heart failure and coronary artery disease...yeah, double whammy on that one :(  If they can, they'll try to put a stent in, but if that doesn't work, then we're talking open heart surgery.
3. I'm starting a new medicine tomorrow because the other 2 that I've tried this time haven't worked.

Yeah. Sucky.

I'm not exactly sure how one is supposed to put this all in perspective. I got nothin' right now....just numb, oh thank you dear finder of happy pill molecules :)

I guess I need to give an update on my health. Since July of last year, I've tried Prednisone, and when that didn't work, I switched to Cyclosporine. I actually stopped taking that medicine about 2 1/2 weeks ago because my most recent 24-hour urine showed very little improvement, and we should've seen something by now if it was working.

So, I took a couple weeks off of the drugs...trying to figure out what I'm going to do. The worst part in all this is that both my nephrologist and ob/gyn are advising me against having any more children, and that's just something I can't wrap my head around, or accept, I guess. I went through some anger, some denial, and some grief...all the usual emotions. I mean, essentially to me, it felt like the loss of something...the loss of the possibility, the loss of the family I always imagined...the loss of a sibling for Izzy. I don't know, I still can't make sense of it all, but I DO know that, deep down, I truly feel that my body can do this one more time. All of the risks that have been presented to me are the same risks for any pregnant woman, I'm just at a higher risk..but how high no one can say. Am I supposed to just give up? Am I being selfish for thinking that there's no way in hell I'm gonna let this dream die without a fight?

At this point, if THIS drug doesn't work, then there's not much else that can be done. I have a 50% chance of going into renal failure in 5 years, and then if I make it to there, then my risk jumps to about 80% that I'll go into failure within 10 years. Not good numbers. But here's the thing: there is nothing I can do, medically at this point, to change the course that I'm on. Nothing. So what...do I just live in fear for the next 10 years...waiting for the other shoe to drop? That seems like a pretty shitty existence, doesn't it? And I just want to scream because I FEEL PERFECTLY NORMAL!!! Especially since going off the meds....my energy level is slowly starting to rise, which is great! But now, back on the meds, and back on a low dose of prednisone. I'm praying that I don't have any side effects from it (especially at this low dose) but I'll just have to wait and see. If this doesn't work in 3 months, then we're done with it, so that's not too much time. Plus, that'll give me some more time to convince my doctor's that my body can carry another baby perfectly fine :) Keep your fingers crossed for me, ok?

Kidney disease update

I got my latest test results back, and while there's been improvement (5800 mg/24hr to 4900 mg/24hr), it's not enough.  So my doctor and I've decided to stop the cyclosporine at this time.  What's great about this is that there's no weaning, so I took my last dose Friday morning.  Hopefully this means that the tiredness and headaches will go away (but MAN, did I have a whopper of a headache Sunday/Monday!).

So, what does this mean?  Well, I've got 3 options at this point:
1.  Discontinue cyclosporine (which I've already done)
2.  Start taking Cellcept (another drug with MUCH less severe side effects, but also little chance of actually working...there isn't a lot of data to back it up.  It's more of a 3rd line of defense, after prednisone and cyclosporine).
3.  Take a break from all meds, talk to Joacim, and figure out what we want to do, then discuss with my neph at my appointment on the 27th.

Yeah, not such great options, is it?  And my biggest concern, in this whole thing at this time, is being able to have another baby.  When I got pregnant with Izzy, my protein was well controlled and in the normal range, with no residual issues from the disease or the meds.  THIS time, however, is a different story.  Since we can't get my protein down, my neph is not recommending me getting pregnant.  When I asked him if he was concerned about me or about the baby, his response was, "Yes".  Ok, that hits hard.  I told him that I feel like he's telling me that I won't be able to have any more kids and that we're just going to wait until my kidneys fail, and he pretty much agreed.  Of course, I could stay like this for quite a long time.  My kidneys, at this point, still function perfectly.  Unfortunately, there are long-term effects with the protein loss I'm experiencing...long story short, it's not going to get better.

I'm not ready for another baby..not quite yet, but I know it's coming. I want Izzy to have a sibling.  I think Joacim and I are great parents, and I think we've got a lot more to give, and it terrifies me that the option may be taken away from us.

From what I understand, I'd be at a higher risk for pre-eclampsia (which I was with Izzy, but never had any issues), but I'm not sure what else.  In regards to the baby, there's concerns of low birth weight due to malnutrition from my protein loss and premature delivery.  Now, granted, this is what I've gleaned from my very limited reading.

I've got an appt. with my ob/gyn on Thursday, and I'll use this opportunity to discuss with him what my options are.  I mean, if my ob/gyn is supportive, then I'm confident that my neph will be.  Of course, I don't want to do anything crazy and irresponsible, but I want to know what all of my options are. I've not given up hope yet.

Not good news from my nephrologist

I had an appointment with my nephrologist (kidney doctor) today to get my test results form my 24-hr urine that I did this past Sunday, and the results aren't good.  I'm at 5750 mg/24 hrs.  This is after being on cyclosporine for 4 months.  I expected progress...the thought that it wasn't working just didn't occur to me, so it was a HUGE blow for me today.

And when I look back at my previous results, I see that the number has actually gone UP from where I was after the last 24-hr test.  Back in October of last year, I had gone down to 5100 mg from my original starting point of 5700 (OK, so it wasn't much, BUT IT WAS SOMETHING!!!).

I, at this point, don't know what to think.  Or what to do.  Or how to feel.  Or how to process it all.

I'm a bit numb I think.  I haven't cried because, seriously, I'm a pretty ugly crier :)  I'm so very thankful that my doctor takes the time to explain things to me, and I can really see that he's sincere and frustrated as well.  He expected results too.

At this point, we aren't going to change anything except for lower my dosage of cyclosporine.  I've been having some nasty side effects from it (headaches, tingling skin, exhaustion) so I'm going to go back to the dosage I started at originally.  He still thinks we'll see results, and when I asked him what made him think that when there was absolutely no evidence of this (and it's actually contrary to results) he said, "because I still have hope".  I thought that was nice, honestly.  But we're essentially keeping me on this drug based on nothing but hope.  But hey, placebo's have worked before, right????

Next steps...well, let's see.  I think he's going to refer me to some doctor's at Ohio State because he, at this point, wants a second opinion...to see if there's anything he's missing.  I love the fact that he's not too proud to admit that he knows everything.  Not sure when this is going to happen exactly though.

And as far as drugs...well, the shotgun is getting bigger (quoted from my neph).  The next drug is cyclophosphamide.  Here's a link to the Mayo Clinic website that gives some details, but here are the "highlights" (and yes, I'm being terribly terribly sarcastic):

1.  Also, empty your bladder frequently, including at least once during the night (so this means that I have to set an alarm to wak me up in the middle of the night to PEE?????.  As if sleep is something I have an overabundance of anyway..) 
2.  Cyclophosphamide often causes nausea, vomiting, and loss of appetite (geez..that sounds terribly appealing).
3.  If you can, avoid people with infections. (vague, and impossible with a toddler at daycare)
4.  Be careful when using a regular toothbrush, dental floss, or toothpick. (WHAT THE HELL????)
5.  Be careful not to cut yourself when you are using sharp objects such as a safety razor or fingernail or toenail cutters. (ummmm...does anyone know how CLUMSY I am?????  I'm going to have to wrap myself in bubble wrap).
6.  Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used. These may include certain types of cancer, such as leukemia or bladder cancer. Discuss these possible effects with your doctor. (don't even know what to say about this one)
7.  Drum roll, please....SIDE EFFECTS

More common

• Darkening of skin and fingernails
• Loss of appetite
• Nausea or vomiting 

Less common

• Diarrhea or stomach pain
• Flushing or redness of face
• Headache
• Increased sweating
• Skin rash, hives, or itching
• Swollen lips

 Oh, and here's another good one...

 "Cyclophosphamide may cause a temporary loss of hair in some people. After treatment has ended, normal hair growth should return, although the new hair may be a slightly different color or texture." 

Ok, people.  This is a CHEMOTHERAPY DRUG.  There's just no way that I can take this.  Seriously..they better come up with something.

THIS. SUCKS.

Sick....again :(

Seriously????  Again????  Or is it that I never truly get over it in the first place?  I felt this coming on yesterday, but when I woke up this morning, I felt as though I had swallowed sandpaper.  My throat didn't hurt so much, but it was really really rough.

Thank goodness Joacim was kind enough to let me sleep so long.  It was his turn to take care of Izzy this morning (and she woke up at 7:30...again), but I got to sleep in until 11:00.  That may sound like a really long time, but I still woke up feeling as though I didn't get enough sleep, and I went to bed at 11:00 last night!  This has GOTTA be the meds...it's just not normal to be this tired and sick all the time.  I'm drinking tea, resting, getting the humidifier ready.  I've just had it.

I think I'm a little tired of this....

The primary medications I take for my kidney disease are predniosone and cyclosporine, both of which are immunosuppresants. Essentially, they are used to try to suppress whatever is "attacking" my kidney's glomeruli. Unfortunately, it doesn't just work on the kidneys but rather the entire body. And it seems that I catch every single bug/virus that I come into contact with. Having Izzy in a daycare certainly doesn't help me at all.
I could feel this sickness coming on yesterday morning. I woke up a bit stuffy with a sore throat, but this morning I felt downright AWFUL. All I wanted to do was lay in bed, but I had to get up and get Izzy to daycare. I know that I am in no condition to take care of her right now. After I dropped her off I ran over to the drugstore to pick up yet another prescription and some stuff to help me feel better. I'd read a ton of stuff about a neti pot, so I picked up one of those too. For anyone that doesn't know what a neti pot is, here is a link that kind of explains how they work. And I gotta tell ya, it's not fun to use one of these things. I felt like I was nearly drowning :) I'll try it again later, because the nasal sprays hurt my nose so much, but I'm not looking forward to it.
I have done nothing all day but sit on this sofa and surf Etsy. Seriously. And it feels good...

kidney update

I had an uneventful appointment with my nephrologist yesterday, and thankfully have no bad news to report, other than the fact that I think their scale has something against me.

I'm going to try to explain what's going on wiht the meds, and why this is all so terribly annoying to me right now. I start taking the new drug, cyclosporine, on January 24th, at 100mg 2x/day, which is pretty much the base level to start out with. At this point, it's all just a crap shoot because there is no approved therapy for what I have (FSGS). Now I have a feeling of what lab rats go through (well, almost :()) Anyway, because of this drug, I have to get weekly and bi-weekly blood tests run. Ever week they check my cyclosporine level, trying to find my "trough" level. So, I have to make sure that I have the blood test done 11 1/2 to 12 hours after my last dose, so that makes an appointment for me every Monday morning at 8:30. My doctor is looking for my trough level to be somewhere between 100 and 200 mg, which is considered "therapeutic levels". The first results came back and my level was <50 (not so good) so my neph upped my dose to 123 mg 2x/day. The last results show ~53, which is clearly still not where we want to be, so now I'm up to 150mg 2x/day. My next blood test is Monday, so we'll see if it's having any effect. I imagine it's going to go like this for a few more weeks until we find the right dose, but hopefully we can keep it low. There's some toxicity concerns with this drug, in that it can actually do some damage to my liver and increase my blood pressure. So, I also have a liver panel done every 2 weeks, and check my blood pressure fairly regularly right now. I'm on a blood pressure med as well that's had some success in lowering protein spillage, but because my blood pressure has alwasy been so low, my neph doesn't want to increase my dose too much for fear of me passing out somewhere along the way (nice, right?). Plus, increased cyclosporing doses = increased risk of side effects = very unhappy me.

Ok, so that's the lowdown. I'm frustrated, truly frustrated at this point. I'm still weaning down the steroids....I'm at 25 mg a day, which is a HUGE step down from 70mg, but not enough for any of these crappy side effects to subside yet. Scary thing is that I don't think my weight budged until I went off of them completely the last time. Since I'm going to have to be on a maintenance level of prednisone for the next couple of years, this FREAKS ME OUT!!!! My neph said that he's going to try to get me to 7.5 mg, so maybe it'll be enough. I'm keeping my fingers crossed. He said that I have the metabolism of a bull (this said in regards to the fact that I'm metabolizing the cyclosporine too well), and I told him that's not what his scale says. What's frustrating is that, since the beginning of January, I've been working out 4-5 days a week, and watching what I eat, and that number on the scale is still going up. Now, I wouldn't say I've gone on a diet or anything, but I definitely feel that I've been more conscious of what I've been eating. It's hard to know if I'm fighting prednisone or if I'm just going to have to work harder. I can see some differences...I definitely know that I'm building muscle in my legs because my jeans fit differently, and I can see some change in my arms, but everything is still buried under a layer of fat. It's frustrating and discouraging sometimes.

I want so badly to go buy new clothes, but it doesn't make sense if I plan on losing this weight, so I keep holding out. But seriously, how long is this going to take? I know it's good that I'm starting now, and I'll have a leg up when I'm down to the lowest level, but man it would be nice to see some results on the scale. We've planned out trip to Sweden for the summer, and I don't want to look/feel this way while I'm there. We're renting a cottage on the beach for midsummer, and I'm soooo excited about it!

I try not to let it all get to me too much, but some days are harder than others. It doesn't help that I've been sick with this blasted cold for the last week or so. I keep forgetting how much I have to watch this stuff. My neph kept asking me about my cold yesterday...how long have I had it, am I coughing anything up, any fevers??? Guess he wants to make sure it doesn't progress to pneumonia or anything, which is something I NEVER would've thought about. I do notice how much more often I get sick and how long it takes to get better. And I'm so inexplicably tired...I mean, I know I don't get enough sleep, but even on the days where I do I neve feel rested. I've already used so many sick days because of Izzy this year so far that I have to be careful. My intermittent leave is up on Sunday, but I've resubitted another request to extend it. Keep your fingers crossed that it doesn't take another 2 months to get this one approved!

OMG...one more thing. These hot flashes can go. Seriously. I'm done with it all. I swear I can work up a sweat just typing right now. It's ridiculous, disgusting and miserable. I have so much empathy for menopausal women everywhere (and I absolutely dread it myself if this is one of the side effects). And sadly, there is nothing that can be done except for a cold shower...not so convenient right now, is it? And I've ALWAYS been the type of person to be cold. It's terribly strange for me to be wearing short-sleeved shirts to work in the winter, but that's exactly what's had to happen. Ahhh...all those sweaters I can't wear because they either don't fit or they make me a sweaty piggie. nice.

Ok, I think I've vented enough to feel better now. Sometimes I just gotta get it out.