Good Kidneys are Expensive These Days...

My incredibly adorable kids

Whole outfit from Goodwill...Really!

 As most of you realize, I'm just your average gal with a mortgage, a cute kid, two beautiful daughters and lots of thrift shop clothes,
because I can't exactly afford the new fancy ones from Wal-Mart.  Most of you also know that I'm pretty okay with all that, and could continue my life quite happily driving my quirky used car and giving myself homemade haircuts, but I have these two kidneys that just want to rain on my parade. What's a girl to do?

Well, for one, I went a couple of months ago and got this nifty tube placed in my belly.  It helps me connect to a machine called a Cycler, which I hook up to every night before I go to sleep.

Seriously, this was the most expensive accessory I ever purchased

The Cycler pumps a special kind of solution called Dialysate into my Peritoneal Membrane, where the solution  (2000ml) sits for an hour and a half or so at a time, filtering out the impurities in my blood. (I know this would be a good place for one of you to take a humorous jab at me, so go ahead if you need to.)  Then the solution that sat there for all that time drains out, and my belly gets filled up again.  This happens four times throughout the night and takes about 9 hours to complete.  I have to do this every single night.  If I stop, I'm pretty much pushin' up daisies in a couple weeks or so.

This is the Cycler that adorns my bedside table...so much for candles... 

The positive aspects of Peritoneal Dialysis are that I don't have to go to a clinic three times a week, my blood never leaves my body, and I don't have to deal with the fluid and dietary restrictions that most people on dialysis have to deal with.  

Extra Closet, huh?

The negative side:  it won't work forever.  Also, it is kind of painful sometimes, and well, that belly-tube isn't exactly the newest fashion fad--although I manage to hide it under my clothes pretty well.  This type of dialysis does allow me more freedom that I would have if I had to go with Hemodialysis, and for that I am thankful, but it does require lots of planning ahead if I go on a trip.  I have to use 2, 6000 liter bags of dialysate every night.  These come delivered to my door in boxes.  Boxes which take up a lot of room in my "extra" closet.  This seriously limits my thrift shop experiences--whether or not I have $20.00 in my pocket (which lately, I rarely do).

copious amounts of garbage

I really cannot leave out the fact that I produce copious amounts of garbage every week from all the tubing and empty solution bags and empty boxes I have to throw out.

That is where I am now, adjusting quite well I might add to the experience of being kept alive by an annoying beepy machine that only wants me to lie on my back or left side to sleep.  But hey, at least I have enough energy to do more than lie on the couch watching Netflix all weekend now!

Dialysis is expensive.  I have private insurance through my former employer, for which the National Kidney Foundation is paying the COBRA premiums.  This insurance is basically useless, because they consider my Renal Disease to be Pre-Existing.  It will not cover anything kidney-related until after March 2014 and will expire in January 2015.  That leaves me with 20% of the cost of everything Medicare will not cover while I am on Dialysis.

In the long run, I will need a Kidney Transplant.  Scary words, even to me--and especially so after learning how much a new kidney will cost me, both in time and in money.  The average kidney transplant costs around $75,000.00, not including the pre-transplant healthcare maintenance, or days/weeks of staying at a hotel in Charleston to be near the Transplant Center at MUSC.  There's also the time I'll miss from work during my assessments, transplant and subsequent follow up. I will be out of work for at least 6 weeks, if not longer.   I mean, really , somebody's gotta keep a roof over my kid's head and at least for that amount of time, it's looking like it won't be me.  

According to MUSC, if a person only has Medicare at the time of Transplant, she can expect to pay about $5000.00 just the first month after transplant for medications and follow up care.  That's AFTER Medicare pays it's 80%.  Also, I will owe 20% of all the other charges not covered by Medicare.  That's about 20K just for the transplant and the first month's check ups and medications.  This amount doesn't include the hotel stay in Charleston for me and my caregiver, who will be required to stay with me 24/7.  If I find a living donor, the costs soar even more.  

I'm not sure if I'm covering everything here, it is all quite overwhelming.  However, I am getting to a point, so bear with me.  The folks from MUSC have encouraged me to reach out to my friends and family and ask for volunteers to help me fund raise.  I have a general aversion to asking for help that has influenced me my whole life, so doing this is not easy for me.  After all-  I'm the problem solver, ya know?  

There is an Organization called National Foundation for Transplants where people can donate money (or not) to help people like me.  The NFT collects donations specified for me, and allocates those funds to me as I need them.  Since the NFT is a non-profit, donations are tax deductible and I will not be responsible for paying taxes on the funds raised because I will receive them as grants from my own fund--therefore they aren't counted as my income.

The website covers in more detail, the kinds of financial help I will be able to receive from donations made in my name.  The big hurdle I'm facing with this, is I'm not allowed to fund-raise on my own behalf.  I have to ave a few dedicated friends who will be willing to sign up for the task of managing this campaign for me.The first step in creating my donation page is to find a Campaign Manager and a Campaign Secretary.  Those are the primary volunteers who can help me get this show on the road.

 I know you are all busy, and have your own battles to fight, so if you can't help out in this way, please don't feel bad about it.  But if you can, I'll buy you a Margarita after I get my Transplant and we will party 'till the cows come home!   

The Cows, FINALLY coming home....sheesh!

The Quest vs. Circumstance

Dear Blog,

It has been awhile since we spent some time together.  When I first created you, I planned to use you as vehicle to carry my story of finding happiness to the world.  Of course, the decision I made back then (to write about my quest) came from all the advice I heard the therapists at work telling our clients all the time, "Your happiness is up to you."  "You create your own happiness."  "You determine your fate."

So, off I went, in search of things to be happy about, and to be honest, I did start to feel happier.  I still remind myself to be thankful for the little things every day, because those really are the things that tend to bring me the most happiness.  I have good friends, an awesome little kid, people who make me laugh, and I rock a pretty decent wardrobe of thrift shop clothes.  Something changed though, and the little things that still made me happy, didn't exactly help me capture happy-NESS.  Trust me, there is a difference.

I took some months off from my Quest.  I'm sorry, but I really didn't miss you.  There's so much pressure involved in being happy all the time.  I gave myself permission to be unhappy for a while.  You know, to grieve my losses and admit my fears and even isolate myself on the couch every weekend watching entire TV series on Netflix until my eyes almost fell out.  I let myself forget about reality swallowing me up, and I just surrendered to it.  Some might call this little break I took "depression" but I think that word is way too overused.  I'd prefer to call it, vacation.  I took a vacation from trying so hard and I think it did me some good.

One thing that brief break taught me about the psychological mantra of those therapists I used to work with, was that it's at least somewhat erroneous.  I agree that my attitude goes a long way towards helping me cope with life and keeping my spirits from diving into the eternal pit of darkness, but I don't completely agree that I can just up and whip myself up a big batch of happiness with a little hard work.

You see, there's this thing called Circumstances that kind of always screws things up.  I know it has happened to other people besides me, but I seem to be especially blessed with these miracles.  I call them miracles because people are always telling me that God is giving me these things to make me stronger and better.  All I can think though, is how terribly weak and bad I must have been originally if God has to give me this much crap to make me stronger and better.

I just want to say for the record that it's not my fault that I have End Stage Renal Disease, or that I had to start Dialysis in July.  I didn't create the disease or make it keep getting worse and worse over the years.  Like my Doctor said last Thursday when I told him that the reason I had ESRD was IgA Nephropathy, "That's just some bad luck."  I also didn't purposefully accept a job with a company that was so heartless that it decided to fire me for trumped up reasons once they found out that my health was going to cost their insurance premiums to skyrocket.  I didn't just decide to stop paying my mortgage this month, it's just that Unemployment doesn't pay enough to support me and my son.   I didn't decide to sign up for food stamps because I thought it'd be fun--it was humiliating.  I could keep this list of circumstances going for days, but that would get boring for you so I will stop here.

Anyway, here I am.  I still want to be happy, so I try my best to stay positive, even though people say stupid things to me all the time and all the medical professionals who work with ESRD patients assume we are all 65 or older with grand children and a retirement fund.  I laugh when something is funny (even if I'm laughing at myself) and I joke with my dialysis nurses.  I pretend to be proud of this tube in my belly and crack jokes about that all the time too.  I put baggy clothes on and try to trick people into thinking I'm pregnant, and I joke about the phosphate binders I have to take with every meal.  I refuse to speak of pain or nausea or fatigue, and I push myself harder and harder because I TRULY want happiness!  I know it comes from within, but so does this darned tube in my belly, and the two seemingly fight against one another to my detriment.  I guess that's why I have to come back from my break and start working at it again.

Wish me luck, loan me a buck, or just read this and laugh to yourself and say, "That Rebecca...she just cracks me up."  Any of those would probably make me feel a little happier.