In lieu of gifts : FSGS Sucks

Today is my birthday.  WOOOHOOOO!  For those of you that don't know me personally, this is always a big deal.  It always will be.  I don't subscribe to the theory that the celebrations should get less grand as I get older.  As we all know, getting older is hard work, and I want need to be rewarded :)  I believe there's NO reason why I shouldn't get a gift.  Yes, I'm that annoying.

However, for all of you dear people reading this, I'll make the exception IF, and only if, you donate to my NKF Kidney Walk page.

I seriously cannot make this any easier.  CLICK ON THE LINK TO THE LINK UNDER HERE:  

http://donate.kidney.org/goto/jenntrunk

Please....help me make this an awesome birthday by helping me and thousands of others.   You'll feel good, I'll feel good, and seriously...what am I gonna do with all those GIFTS when I can't even hang a photo in my house yet?  :)

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.

My birthday gift to myself

Stealing an idea from my good friend, Rebecca, I had a mammogram this week.  She always schedule hers around her birthday, partly as a reminder, but also in part to give herself the gift of health.  Since my kidneys are in the shitter, I gotta do whatever I can for the other stuff.  That's why I went to the dermatologist for a mole check, and that's why I scheduled my first mammogram.

And it was WAY over-hyped and terribly (thankfully) uneventful.  I'd take that over a cervical exam ANY day :)  And here's the best part:

FINDINGS: Mammographically, the breast tissue is heterogeneously dense,
which could obscure detection of small masses (approximately 51% - 75%
glandular). There are no dominant masses, suspicious micro calcifications
or areas of architectural distortion.

Impression

There is no radiographic evidence for malignancy. Recommend
annual mammograms.

A lay language report of this examination will be provided to the patient.


MAMMOGRAM ASSESSMENT: ACR 1 Negative

Finally...test results that don't make me want to bury my head in the sand, but rather celebrate :) 

Happy Birthday to me :)  And thank you, Rebecca, for the timing idea ;)

2012 NKF Kidney Walk Update : FSGS Sucks

OMG.  I just looked at my page and say that I'm over 80% of my goal.  I'm celebrating the awesomeness of my friends, family and supporters, but I'm also greedy when it comes to raising money for my personal interests, so I'm not done yet.

I've got a little more than a month to go, and I want to shatter my goal.  Won't you please help me do this?  I had to turn down volunteering for the event due to the unpredictability of how I feel lately, which makes me feel even worse.  So the least I can do is raise more money.  I gotta tell you, they take this SERIOUSLY up here.  Every day I get new emails about some fund-raising that some team is doing.  Since I'm new to this area, it's not as easy since few people know me, but I have hope for next year.

I need to make a flyer to post up at my work and Joacim's work for people to make cash donations (always acceptable because I know there are some people who aren't comfortable doing things online.  Hopefully I get that done tomorrow, but it's a busy work day so it may be delayed a bit.

For those of you (Caroline and Daniel :) that still haven't joined my team, please sign up!  You don't have to be here to participate, but you can help me raise money.  I've said before, and I'll say it again, I miss my Lilly folks.  They've probably forgotten about me, but I haven't forgotten about them, nor have I forgotten about their generosity.  I mean, it's truly humbling to have people step forward and donate to help a cause because it's something that affects someone they know.  I do it to...I donate to other organizations because I know what it's like for them.  Asking for money is uncomfortable at best...I'd rather volunteer.  But volunteering doesn't fund research...it doesn't fund educational workshops, and it sure doesn't fund legislative assistance, and financial donations do.

Here's a video about folks waiting for a kidney transplant.

<iframe width="640" height="480" src="http://www.youtube.com/embed/k607dCg9HNM" frameborder="0" allowfullscreen></iframe>  

There is one statistic that I want you to remember.  As of September 3, 2012, there are 93,142 people waiting for a kidney transplant.  I'll be on that list someday, maybe sooner, maybe later, but someday it's my fate.  The NKF does a fantastic job of bringing awareness to the plight of kidney disease, as well as providing education for CKD patients, funding research opportunities for physicians, etc.  There are SO many things that they do, and none of them would be possible without donations.  So please, take a moment and click on this link which will take you directly to my donation page.

My page:   http://donate.kidney.org/goto/jenntrunk

Lots of love from me!!!!!

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!!!)