Why must some things be so hard? : FSGS Sucks

I tried to fill my tacrolimus prescription yesterday.  It's 5mg  2x/day, which equals 300 pills.  My insurance will only fill 180.  My doctor, a very busy doctor at Mayo Clinic, has to provide Cigna with a pre-authorization.  Seriously.  This is my life.  And now I'm going to spend a week of time I don't have sorting it all out.

I also spoke with some doctor at Mayo today about my last tacrolimus lab results.  My regular doctor and the fellow doctor from the last time are both out of the office, but she wanted to make sure that I got a follow-up, which was nice.  My trough levels were at 5.1mg 2 weeks ago, and we're looking for around 7.  This makes me assume that Dr. Fervenza is going to want to up my dosage, and it's around my current dosage that the headaches begin.  I've had one nearly ever day since last week, and I have zero quality of life when they hit.  Hell, I just wanna whole up in my bedroom in the quiet darkness, yet I have a JOB and a DAUGHTER and a HUSBAND and a HOME and a LIFE that I want to lead.

I know we're going to disagree about what the next steps are, but I hope we figure it out TOGETHER.  The doctor that I spoke with (who shall remain nameless because I just didn't bother recording it in my brain) mentioned cyclosporine, and I was like, "Are you KIDDING ME?"  She asked if I'd taken it, and I told her that I had in 2009 with no success.  I already know that I'm not doing it again.  I'll try a new drug, but not one that I previously took for the required amount of time with zero success.  I know what the side effects are, and unless there's some new study or data available, I have zero faith that it will work differently the 2nd time around.  This is where doctors and patients sometimes lose their way, willing to bang their head on concrete if they thought it might save their kidneys.  I'm not that patient.  I'm going to make sure they hear me loud and clear when I discuss my quality of life, because that's ALL I have right now, and I'm not willing to give that up when I know there's a better future that I should expect.

Me and the ER have to stop meeting like this : FSGS Sucks

I wrote my last post on August 30th, complaining that I couldn't sleep.  Things got MUCH worse over the following weekend.  Joacim and I went to dinner with some friends on Saturday night to a artsy-fartsy restaurant downtown.  All 4 of us shared our food as it was served "family style".  We had a great time...I had a couple glasses of wine...no big deal, right?

We got home around 11:00pm, and our neighbors were having a housewarming party that was still going strong, so we went over there and hung out for a bit.  I had one more beer there (keg beer, no less), but was feeling a headache come on so I went home.

That night, I didn't sleep well...it was one of those nights where I felt like I was awake every hour, even AFTER I had taken a sleeping pill.  By Sunday morning, my head was pounding, and my stomach churning.  To make a long story short, I never left my bedroom that day.  I was either in the bathroom dry heaving or shitting (sorry to be blunt there, but it is what it is), or lying down in the bed in the dark, begging for mercy or death.  Seriously..I'm not being dramatic here...it was THAT bad.  And it didn't get better.  I'll admit this now because the situation seemed desperate for me at that point, but I took 2 aleve.  I KNOW....I KNOW...this is a HUGE no no for me, but I honestly couldn't figure out if the headache was causing the vomiting and diarrhea, or just a by-product of something else.  Joacim thought I might have food poisoning, and after looking up the symptoms, I really couldn't disagree.

Since I wasn't feeling better, I dragged my pathetic self to the emergency room AGAIN (oddly enough, 4 weeks to the day from the LAST time I was there).  I got some fluids, some anti-nausea meds, and some awesome painkillers.  Due to the painkillers, I couldn't drive, and Joacim was at home with a thrown back and a sleeping child, so my dear friend Caroline graciously came and picked me up and took me home.  The ER doctor gave me some Zofran (anti-nausea) to take home, and I ended up needing it the next day.  I managed to pull myself out of bed on Monday morning, got dressed, and drove to work in absolutely nausea-induced misery.  And then I proceeded to drive right by work, and back on to the interstate back home to my bed.  I just felt awful still, which really sucks (work-wise) because this was the 2nd sales meeting that I had missed, and I fear my new employer is starting to wonder what they got themselves in to.  This scares me....I LOVE this job...I don't ever want it to be in jeapordy because of these damn kidneys that I hate.  (and in the back of my head I can hear Izzy saying, "Mommy, you said 'hate' again".  That little girl keeps me on my toes ;).

I finally recovered by Tuesday, but had to mow our lawn since Joacim threw out his back, and that was BEYOND exhausting.  The hills on the side will be great in the wintertime for sledding, but were the bane of my existence last Tuesday.  Thank God for self-propelled lawn-mowers, or I wouldn't have stood a chance.

I've had lots of bouts of swelling lately.  Fortunately, they keep going away, so I'm hopeful that this is food related, because I can fix that.  This job has created some bad habits for me...I go out to eat A LOT.  I try to make good choices, and at a sit-down restaurant I can usually do that (salmon caesar salad happens to be my favorite right now..dressing not so good but salmon so good), but when I'm in a hurry and fast food dictates due to time, I fail.

And of course, there's the frustration of what I miss every time I'm sick. This time it was a cruise on Lake Minnetonka that was provided by our realtor.  I lie there while Joacim and Izzy went ahead without me, and thought about all of the things I might miss with her due to this disease, and it makes me beyond sad.  Some may wonder why I focus on these negative things, and until you've experienced it, it's not easy to explain.  I want to be prepared for those feelings, I want Izzy to know that I would if I could,  but most of all, I never want Izzy to be disappointed because her mommy is sick AGAIN.  She asked me that day if it was my tummy, or my head or my kidneys....she's already been exposed to more than any kid needed to be at her age.  But on that Sunday, SHE took care of me.  She rubbed my head, brushed my hair, and snuggled up next to me when I asked her.  And it's strange, but sometimes, when I feel that way, the presence of another person actually touching me soothes me, even though sounds make me cringe.

This post is rambling, but so are my thoughts on all of this.  I don't know what my tacrolimus levels are, but I'm guessing they're higher because the headaches are starting now.  I think that was part of my problem last weekend, I just didn't make the connection.  I've been pretty lucky regarding the headaches, up until now, and no amount of Tylenol can make a dent in these headaches.  They are a cross between a regular headache and a migraine, and they are unbearable.  They make me grumpy, unproductive, and generally unpleasant to be around.

I had a reader send post a comment on one of my previous posts telling me about PD (perioteneal dialysis) and how, based off of her email, her life is better now than when they were trying to save her kidneys.  She leads a pretty normal life, and has energy.  I honestly DON'T know why I'm trying to save these things....even if I get off of this medication, there's no guarantee that I'll feel better.  They just don't work the way I need them to work in order to have the life I want and deserve.  It's about time to start having some seriously discussions (and doing some serious research on my part), about what my next options are.

Thanks to everyone...friends, family, and strangers who read this.  Comments make my day..especially ones that are truly meant to show me another side (thank you Wendi!!!)