Gray Power

I got my hair cut this afternoon - Short! Short! Short!

And Gray! Gray! Gray!

I've decided I kind of like it. So, I think L'Oreal is losing one of their main customers. I should have bought stock in L'Oreal. I've supported them for many years. Once I hit my 30's and my natural auburn hair was getting a few grays in amongst the red, I bought my first hair color from L'Oreal. (After all, women older than me, at the time, were touting that we aren't getting older; we are getting better.)

It's more salt and pepper - streaks of near white. Overall - it's not a bad look. And it might even appear that I have some smarts up there - it somehow gives me a wiser demeanor. I think.

My hair stylist - Mechanic Man, of course. Gives new meaning to "only your hair dresser knows for sure" and he's not talking!!!

:)

Bad, Bad Kidney

September 30, I will have been on dialysis for two years. The average time spent before transplant is six years. Trivial little facts on the Second Anniversary of Dialysis:

Total Weeks: 104
Total Days: 312
Total Hours: 1,092
Cost per hour average: $1,143.00
Total Cost for two years: $1,248,000 (yes, that is almost one and a quarter MILLION)


In the last two years, I have had four surgeries, multiple doctor visits, 20 drips to unclog my site, bitten by a dog in my dialysis hand once, had my blood pressure crash about 40 times. (This morning, for example - 60 over 40 and still breathing)

Every dialysis day is an event. I call them “Bad Kidney” events. Like, a bad dog. They simply misbehave. Even though they aren’t functioning – those little guys continually act up.

• First you get poked by two needles – and there is every chance just one of the needles will not work, or will infiltrate, or will hit a nerve. Sometimes, when any of this happens, you have to go home (they charge you anyway for the needles and the prep of the machine) AND you have to come back the next day! AND, this little scenario is all you think about every time you start dialysis. Will it work? Are they using the right needles? Will the flow be sufficient?
  
• Then once you start – you have to worry about your blood pressure crashing. Which usually happens towards the end. Alarms go off, they have to add back fluid, and you leave needing to have fluid removed but you wait until the next time.
  
• Also, once you start, you have to worry about the blood flow both going into the machine and coming back into your arm. If it is too low or too high, it sets off alarms.
  
• Every time the alarm goes off (an average of 9 times for me each session), it intermittently STOPS my dialysis and then restarts and adds that lost time to the total time spent on dialysis.
  

I love the other patients at my dialysis center. You get to know each other, say hi, you run into each other at stores – and more often than not – at restaurants – where there’s lots of forbidden foods loaded in our no-no ingredients (sodium, potassium, phosphorous). And there we sit, eyeballing each other – knowing we are indulging in our favorite foods with sinful delight.

Unfortunately, I’ve noticed an ugly trend at my center –around Christmas. Winter is not kind to dialysis patients – we’re worn down, our immune systems are compromised, we get flu shots – but we still get the flu, or something kind of mundane to healthy people. And then we lose people – usually in droves. Last winter, it was two women who both died from heart problems. And then there was that one young kid, 35, paralyzed from the neck down, who went home from dialysis one day and decided not to come back – he died after only four days of no dialysis. It gives you pause. (My Dad did the same thing – lasting seven days.) We lost them all in one weekend, so that Monday morning, I came in and noticed the three empty chairs immediately. The techs aren't supposed to tell us what happened, but they tell me because I have that open honest face and people tell me their deepest secrets - including what patients died this weekend. Yeesh.

Oh – add the above trivia to the 90 patients my one center has (Spokane has seven centers) and these are the center’s numbers:

Total hourly earnings: (this is what insurance pays, not what they charge) $102,857 (an hour)
Total annual earnings: $56,160,000.

Ever wonder why insurance is so high?

P.S. I'm thinking of creating a second blog - called Bad, Bad Kidney just for journaling - except that I've said in this one post what happens to me every day, 156 days a year.

Bennies of Being Old

There are many benefits of being old, and being an old woman:

1. No periods. I know - if you are a guy, you don't understand, unless you live with someone who has them.
2. No menopause - I'm too old. Again - you don't appreciate this unless you have a gazillion hot flashes in one hour; sleep with someone who has a gazillion hot flashes in one hour; drive behind someone with a gazillion hot flashes in about a two mile stretch, screaming her head off with a string of expletive deleted words.
3. No rush hour traffic. We avoid them. We don't need them. They are a total waste of our energy.
4. No paying for parking downtown at $150 a month. Whoopee!!!!
5. No dressing up - I can go out in my tattered jeans and baggy t-shirt. Pretty much anywhere.
6. I only need two pair of shoes - one pair for the single party I go to a year (to go with the one dress I own)
7. No alarm clock.
8. I'm so old that Medicare pretty much pays all my health bills (about $600,000 a year)
9. I don't have to work. Ok, so I'm disabled and on social security. Still - no work.
10. No boss - unless you count Mechanic Man, and I pretty much humor him.

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This Bites!

I was bitten by a dog yesterday.

Writing those words seems so bland. Like I just said I was bitten by a mosquito.

No, I was ravenously gnawed on by a large dog with a very strong jaw. Mechanic Man and I were doing our usual browsing through various yard sales. We routinely meet and greet the various dogs and cats who act like we have arrived solely to visit with them and give them our attention and pets. I look forward to these visits because we don’t have room for pets, and I crave the cuddling and warm fuzzy feel.

But not this time.

This time I was going back to the car – and the dog (on a chain inside the owner’s fenced yard) ran up to the fence, both paws on the fence, acting so much like all the other yard sale dogs – I thought in a friendly, “pet me!” attitude.

I was wrong.

He bit down hard on my hand and chewed, then grabbed my other hand as I was trying to get his grip off of me. I came away with dozens of puncture wounds on the top of my right hand, and deep bite marks and cuts on the top of my left hand and middle finger. I now have steri-strips and gauze wrapped around both hands, and a splint on my left middle finger.

More worrisome is that the bites narrowly missed the large vein going across my left hand – my dialysis hand. I have dialysis in my left upper arm – and all dialysis patients need to keep their arms and hands SAFE for future dialysis sites because they always fail eventually and a new site needs to be ready. It’s very scary.

Anyway – three hours spent at Emergency, including the “scrubbing” of all the wounds, sending in a Dog Bite report, and now home – typing with about five fingers.

I will not be petting strange animals anymore. And that is really, really heart breaking for me. It makes me cry.

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Bring Them Home

The Parting Shot photo on Huckleberries August 30, 2011, was so heart breaking. I worry about every CHILD that is serving as a soldier in these days. Every one of them is a son or daughter, some are even fathers or mothers.

http://www.spokesman.com/blogs/hbo/2011/aug/30/parting-shot-83011/


I am thinking of the soulful song from Les Miserables, Bring Him Home. I can hear it in my head, it bleeds from my heart. Please, God, bring them ALL home.

God on high
Hear my prayer
In my need
You have always been there

He is young
He's afraid
Let him rest
Heaven blessed.
Bring him home
Bring him home
Bring him home.

He's like the son I might have known
If God had granted me a son.
The summers die
One by one
How soon they fly
On and on
And I am old
And will be gone.

Bring him peace
Bring him joy
He is young
He is only a boy

You can take
You can give
Let him be
Let him live
If I die, let me die
Let him live
Bring him home
Bring him home
Bring him home.

Lyrics from Les Miserables, Bring Him Home

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Junk (I mean Yard) Sales

We've gone to yet more yard sales, and Mechanic Man has made whopping deals - like a huge box of tools (that look like a lot of junk to me) for five bucks. And the huge box of similar "tools" from the "free" pile. (Free.) And the box of true junk that included a gazillion little boxes with a gazillion little bits in them. Five bucks. And now, take a look at our (what we thought was LARGE) shed - where you pull up the door and several boxes threaten to explode out at you from RIGHT THERE. (sigh) And now take a gander at the boxes by the tomatoes - which will never ripen because the sun just does not shine there any more. I ask you - there is a moral to this somewhere, but I don't know where. Is it still a deal if it's starting to sprout parts in your garden? If you run out of shelf "space," how long does the "shelf life" last? Can you ever have enough greasy parts? Can you take it with you when you die? Can Mechanic Man live to be 498 years old? Is there a sale-a-holic association? Is there room for one more?

Oh my God - I think the Hoarders TV crew is coming up the driveway!

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It's Always Something

So this is one of those things that happens every now and then, when you are on dialysis.

It fails.

I mean - they hook you up with two needles and then discover that it's clogged or stuffed or stopped or failed.

And while they are discovering this, moving from needle to needle and then trying different spots with new needles, they say something innocuous like, "well, if she can't run today, she can come in tomorrow." What? What do you mean by "coming in tomorrow?" Do you mean I have to come in AGAIN and have two needles stabbed into me AGAIN? And then I have to come in on Wednesday to get back on track?

Anyway - that's the story. Dialysis SUCKS. Or in my case, today, DIDN'T suck.

What a pain in the tush, er, arm, er WHATEVER.

It's Always Something.

Nuts and Bolts

I know it's not that interesting to you wonderful readers out there, but I thought I'd catch you up anyway.

You know that I have spent the last six weeks doing something I thought I would never do in my whole life - at that is sticking long, large, huge needles into my upper arm for dialysis connections. Two needles. I was working toward developing a "buttonhole" which is created by inserting the needles into the same spot over and over, about 12 times, until a channel is created much like the pierced-earring hole you got when you were at 10.

The nurse coaching me (bless her for coming out of her way Monday, Wednesday, and Friday to guide me) was disappointed that the buttonhole was not forming. Friday, what should have been my 17th day, proved unsuccessful. I tried, she tried, my tech tried - and that was that. Not happening.

So Friday was my 1st day of trying again only in two different spots and the tech is doing it instead of me.

I bawled all day long - felt like a total failure. I flunked Poke-Yourself-with-Two-15 Gauge Needles 101.

I am trying to keep an up attitude about this whole dialysis thing. It is my mini spa, after all, and I should be able to relax, put my feet up, get a pedicure and a foot massage, and come out refreshed and gearing up for a busy day.

There, you have the nuts and bolts of it.
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Culinary Cuisine Catastrophes by Calamity Jeanie

So, it began with my future mother-in-law asking me if I even knew how to cook. Maybe it began with my own mother’s training me how to cook. I mean, she instilled in me the concept that oatmeal raisin cookies were a hearty breakfast. As the oldest of four children, and the fact that Mom liked to sleep in, I was in charge of a “hearty breakfast.” And there’s oatmeal, eggs, butter, raisins, and sometimes nuts in oatmeal raisin cookies. It’s just so logical and right!

So, that’s the first thing I learned to “cook.”

Along came high school and I chose to skip Home Economics for an extra choir class and ended up taking Home Ec for summer school. The teacher assigned us to tables and each table had four students. Each table was further assigned to a course. My table was assigned to desserts.

So my recipe repertoire grew to include pies, cakes, cookies, and the finale was a Baked Alaska! I can throw together a Baked Alaska and have energy left over to go sit on the couch and watch reruns of Desperate Housewives.

When I got married, I was a Junior in college and one of my required classes was Home Economics 101. I got called in towards the end of the quarter because I was. . . . . FAILING!!!!! (And no cooking was involved). I had to convince the teacher that I was indeed domestic, and that I did things like iron my husband’s handkerchiefs and tried to iron his t-shirts but they kept melting into the iron, but I would persist.

Back to cooking. Being struggling and poverty-stricken college students, we went to a wholesale store and bought bulk food by the case. Cases of soup. Cases of fruit. Cases of vegetables. And the ultimate score was a case of Jello. In fact a case of strawberry Jello. A case of raspberry Jello. A case of lemon Jello. And I proceeded to invent about 101 ways you could have Jello. It was whipped, frothed, foamed, layered, fruited, molded, beaten, whisked, fluffed, shaped, diced – you get the idea.

I ventured into the main course cooking routine by following some of my mother’s advice (and I’m forewarning you that I don’t think my mother was a good cook – like you hear all sons around the world claiming that “There’s no home cooking like my mother’s home cooking!”). There’s her famous tuna noodle casserole (Boil noodles, add one can Cream of Mushroom soup (Campbell’s), one cup crushed potato chips, mix into bowl, cover with crushed potato chips, bake at 350 degrees for 30 minutes).

Hey, I like it!!! But Mechanic Man’s mother was REALLY a good cook and her idea of tuna casserole involved fresh tuna and nothing from Campbell’s and no potato chips. Eeeeeuuuuu.

So, to answer my future mother-in-law (who is now my ex-mother-in-law), I can do dessert! I am great at dessert!

And I have the main course thing figured out, too. Around time to start assembling all the ingredients for a good dinner, I start out to the kitchen and I mutter to myself out loud (so that Mechanic Man can hear me – this is a must), and I say something like, “I think I’ll do something with hamburger and Cream of Mushroom soup. . .” and Mechanic Man practically tosses his chair over trying to get out of it fast enough to beat me to the kitchen, slamming his hand over the cupboard door that holds anything Campbell’s and he’ll say “Um, I think I’ll start something-something.” And I return to the couch, my job done!

You don’t have to be a cook to have a successful relationship (and I’m not starving!)

~Formerly known as Calamity Jeanie, now Domestic Goddess~

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Viral Mother-in-Law

Wow - just read this on Yahoo: http://shine.yahoo.com/channel/sex/mother-in-law-sends-worst-email-ever-to-bride-forgivable-2504517/Viral Future Mother-in-Law

And the wedding hasn't even happened yet.

It reminds me of a meeting with my future mother-in-law - not nearly so horrid, and she has mellowed with time and is now a pleasant frail little old lady.

But that meeting was one for the books. We had gone to my parents first and my future hubby did all the old fashioned things - like actually asking my Dad for permission to marry me. And then they had the usual back and forth conversation, like, "How do you expect to support my daughter?" "What if she gets pregnant before you two graduate?" (We were both juniors in college and would have one more year to go before graduating.)

Then we went to his parents, and while my future father-in-law was dizzy with pleasure at gaining a new daughter that he thought was sweet as pie, my future mother-in-law grilled me much more intensely than my Dad grilled my future husband. She wanted to know how I was going to support my husband if I (shock of shocks) DARED to get pregnant before we graduated. And it went down hill from there. Like, "Do you even know how to cook?"

We married, graduated, had two children, and seven years later (when the boys were 2 and 3), he left for another relationship - and it had nothing to do with my cooking.

Later, at his Dad's funeral, my ex-husband told me that I was the lucky one because I got to divorce his whole family. (I kind of thought of that, once the divorce was final. There are some things you are really pleased to lose.)

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No news. . . .

No news - i can't think of anything fun to write about. Til further notice. :)

Dithers, Drama, & Duldrums

Ok, I know you didn't ask, but I'm going to say it. I am starting to NOT have fun with this dialysis thing. Do you know there is even a website called "I Hate Dialysis" here???? It's actually quite good - not a pity party but an empathy party. Nobody knows like someone else on dialysis. There is so much stress. So much anger. So much sadness. So much really icky stuff. You try to minimize it and not make it the center of your life - but there it is. You have to watch WHAT you eat. You have to watch HOW MUCH you eat. Your list of what you CANNOT eat is three pages long, while you can put on a little post-it note what you CAN eat (white rice, unsalted green beans, and Mandarin oranges, or any combination thereof). You have to watch your blood pressure and hope that while you are on dialysis, it doesn't crash - which happens so much that when the alarms go off, you have to look at your own machine to find out if it is you or not. Of course, if you really crash, you're unconscious, so you don't even give a rip.

Now, because I want a particular method of dialysis called the Buttonhole, (where two needles are inserted in the same two holes over and over until they create a channel, or track, much like the holes for earrings), I need the same technician over and over to create that track. And there is no guarantee that I will always get the same technician. So, I am (dramatic drum roll) DOING THE NEEDLES MYSELF.

I am in training, but it is hands' on. A nurse guides me. I have had three sessions this week, and only the first one was successful. I missed the track of the second needle on Wednesday and had to start over, and today, I made it, but nicked the vein and had to withdraw the second needle and use my temporary site (a catheter in my chest) for the second tube.

First - it hurts.
Second - it is overwhelmingly stressful.
Third - you have to hold off the two sites at the end for ten minutes to be sure they won't bleed. Wednesday, I was done, got up, and blood started to gush. I had to re-hold for another ten minutes.
Fourth. Time D.R.A.G.S. when the needle isn't in right and is touching a nerve and you sit there for three and a half hours in pain. I'm talking a TEN, on a scale of one to ten. I am THIS close to having them take me off early - which wouldn't help me in the long run. (Now I understand why the corporate headquarters' nurse asks me if I have skipped any treatments. Before this, I thought why would I do that????)

So - this is my sad tale. I'm just no fun.
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Lady Bug, Lady Bug, Birds & Bees

So, I checked out my newspaper box (the old orange SR box), and it was covered in Lady Bugs, my favorite little critter of all. I always think of them as pretty little ladies, prim and proper. But before my eyes, I see that all of these Lady Bugs are in pairs - one on top of the other. I clapped my hand over my mouth when it suddenly occurred to me that they were. . . . . . .

HAVING SEX!

Oh my God, that's almost like when I found out my parents "did it." (This was early puberty and after the initial shock, it didn't bother me any more, except I really didn't want to go into their bedroom for anything.)

So, I left the paper in the box and came into the house. I think they need their privacy.

Who knew????

(It is a little disturbing to realize that Lady Bugs aren't all ladies.)
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Birthday Thoughts

Things about April 29 that are very important to me:

* It is my birthday. I have always liked having my own day.
* I am sharing it (unwillingly, I might add) with Prince William and Kate Middleton. I will always remember that it is their wedding anniversary. And I hope they take it to heart that it is MY day and that they need to tie the knot well, and permanently, because I will always remember. Always.
* It also is the date that I can officially take my social security. Which means I can kind of ignore the fact that I'm on disability and can now toss that negative term down the old life tube. I am no longer "disabled" - I am retired.
* I also share this day with my nephew - which is perfectly fine. I know where he lives and he'll honor me for the rest of his days.
* My son's birthday is the day after mine (he was due on my birthday but God knew how very important my own day was to me and He felt that my son deserved HIS own special day). He will honor me for the rest of his days.
* Please note - I celebrate my birthday for a whole month. I expect honor, respect, bowing, and courtseying. Consider me The Queen.

The Queen of the Universe has spoken.
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The House

We went to an estate sale today and it happened again. I go into someone else's house and imagine if it were mine. I think this is because I live in a little tiny house that is not even big enough for me, let alone engine-lifting, car-moving Mechanic Man. This house had it all - it had the wrap around deck/patio. It had a two car garage. It had a shop that was two stories tall and big enough to probably work on ten cars all under cover PLUS a 20 foot windowed office. The kitchen looked over the back yard and patio (and shop, in case Mechanic Man got lost in there, and I could have an inkling of where to find him). (Note to self: need to plant GPS bug on Mechanic Man.)

Homemade soup was being made in the kitchen for the relatives having the sale. The cook kept going in and out while I was looking at stuff (like I need MORE stuff). I told her I was staying for lunch because there were so many people there, nobody would know a stranger was sitting down at the table. She laughed. But I was serious! Still, Mechanic Man took my hand and said, no, we had to go back to our little hovel and try not to step on each other.

I was envisioning whole rooms for different me's. A craft room (not that I am crafty but I AM working on a scrapbook with my dinner group). A music room where the piano is not covered with boxes that we haven't put in storage yet, because if this were MY house, all that stuff would be on the second floor of the massive shop. A library! (And then I could actually keep all those thousands of books that I don't want to give to Goodwill.) A guest bedroom complete with made bed. A second bathroom (a his bathroom and an everyone else bathroom and I'd only really pay attention to cleaning the second bathroom since the first "his" bathroom is hopeless and I don't want anybody else going in there. ever.) A walk-in pantry. A mud room. A computer room. Rooms! Many rooms!

So, here I sit on the couch, which is my reading room, computer (lap top being on my lap) room, tv room, and music room, even though the piano is covered with boxes.

Tomorrow we are going to more yard sales and estate sales and imaginary this-is-my-home sales.

.... And a laundry room.
.... And maybe a full basement.
.... A den?
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Farewell To My Identity

I went through my closets and pulled out my prized possessions - several very expensive dress suits that I looked hot in and worked hot in. When I put one of these power suits on, it was like putting on armor. I grew. I flew. I was Power Jeanie, Secretary Extraordinaire. I swear that I could type faster, think sharper, and could toss the grammar book down the elevator shaft because my power suit was ON. People looked at me in awe - I was that good. A professional secretary with crisp lines, brain at snap attention, focus on the prize - a job well done by a super human machine.

I gave them away today to a sweet friend (thank you so much, Ginny) who will delegate them out to a women's transition group where women are stepping back in to the work force.

My very first reaction to watching my suits roll out the door was to sob! I think one of those suits was still wearing my heart on its sleeve. And then there was the huge relief of letting go of one more thing to make a decision about. It's done. I have one more task done. I need a personal coordinator. That brought another sob.

O boy - this business of cleaning house and paring down my stuff to a manageable small pile is just so emotional!

And I haven't even tried to tackle the prized possessions of thousands of books. All books I have read. All books I plan to read again. All mine, mine, mine. All real - no Kindle here. All made of paper and ink. All dog-eared and comfortable in my hands. All alive with characters and adventures and mysteries.

(Sigh)
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Do You Wear Your PJs to Work?

Recently I posted on Facebook that I was spending the afternoon in my PJs while I was doing the laundry (mainly because I needed to wash my favorite comfy jeans that I usually don’t relinquish very easily). A few people responded, and one noted that I’d be surprised how many places she wears her PJs. So, do you wear your PJs in unconventional places?

I have been able to go out in the summer in pretty PJ bottoms with flower prints, or Betty Boop, or Mickey Mouse, and pretty much go wherever I want – to the store, to the post office, for a walk – and nobody is any wiser. At least that is what I tell myself. Maybe people are whispering to each other about how loony I am to go out in public in my pajamas.

My next door neighbor, a man in his 70s, mows his lawn in his striped pajamas (tops and bottoms). He looks perfectly normal and at home. Because, well, he IS at home. But still.

We had a lady that came into dialysis at 6:00 in the morning in her pajamas. I envied her. Then I started coming in at the same time and found myself slipping slowly into the relaxed dress of slippers. Then pj bottoms. And so now there are two Pajama Ladies. I mean, who’s going to see us??? We’re half asleep anyway and if we are lucky, we’ll go back to sleep while we are sitting there and sleep through the whole thing and wake up three and a half hours later, fully rested, refreshed, cleansed, and refilled. Can’t get any better than that.

Friends were recently discussing their “pajama days” where they just putter around the house in their pj’s and bunny slippers, sipping coffee, eating sweet rolls, reading a book, and doing nothing all day long but enjoying their own company. Never dressing up like an adult. This is the life!!!

So, I’m on my way to Walmart (where I’m pretty sure the dress code is pajamas) to find myself a new pair, since I’m wearing out the one I love (and I need to have one to wear while I wash the other one). I’m planning a Pajama Day a week!

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Bling! Bling!

Driving along a lonely stretch of road, there on the shoulder, was a solitary little pine tree, with a bright red glossy Christmas ball hanging alone on a branch.
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Loss and Grief and Dinner

I had dinner with my four friends last night – this is my support group and my bonding group – the ones I play with, cry with, commiserate with, conspire with. There is so much grief and sorrow in our group lately. I left last night feeling depressed and at loss. One of our group, Jackie, shared with us the stress and worry over her son-in-law, who has gradually, slowly, and resolutely lost his vision over several years. He is only 40. They have tried everything, seen every doctor, done every test, tried injections and other mystery meds, trying to save his sight. But to no avail. It stresses the family – the children are suffering – in their early teens and watching their beloved Dad lose one of the five senses that is probably the most important. I cannot imagine this.

Then there is Kathy, whose Parkinson’s is getting worse and more pronounced. She plods along, literally one step at a time, moving forward and remaining positive. I bowl with her (and Jackie) and I notice more tremors. Her once really high bowling average is now 158 (but much higher than my 103). But she remains positive and proactive – paying special attention to any changes and in her monthly meetings with her specialist, informs him of the updates. He has told her that all his patients seem to know much more intimate details of their progressive decline than he does.

Then there is Sharon, whose Lupus has deteriorated in different ways – making her joints ache, causing her difficulty in breathing, causing her to tire much more easily.

And me – while I move on to a different way of receiving dialysis, which requires two large needles every time. I am dreading it – start on Monday.

Anyway – it just seemed like LOSS was the theme for the evening. We have all lost parts of ourselves, and the stress bleeds over to our friends and our family. Mechanic Man holds on – but inside he is brewing, angry at whatever is out there that makes people he loves have to go through processes to keep them alive.

It is hard sometimes to keep “up” when everything seems to be spiraling out of control.

And yet, at the end of dinner, after all the crying and laughing and sharing, we hugged each other close, even though we will see each other in a week. These are my sisters of my heart. We share, love, and empathize, feel each other’s pain.
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Hi Costs, Hi Insurance, Hi Anxiety, Bye Money

Just now, I noticed all the media attention on the Idaho Medicaid hearing going on. It’s not just Medicaid, but Medicare, health insurance, medical costs, pharmaceutical prices, the recession, so much that just adds to my stress level in a very unhealthy way.

When I first started dialysis, I had the blessing of a staff at the center who manages all my financial worries. It’s a huge relief. Dialysis costs around $250,000 a year per patient. It’s a booming business. But how much of that is actually the cost of running dialysis? That $250,000 is what insurance companies, and also Medicare as secondary insurance, pay – so what was it originally? I ask this because three weeks into dialysis, I went to Orlando and vacationed near a different dialysis center and later was billed for $8,000 for the week. (My center is $12,000 a week.) When Premera wouldn’t pay (because it was “out of network”), the Orlando center sent me a new bill, written down to $800. That is 90% of the total bill. Then, after I paid $100, they zeroed out the balance. So, dialysis for the week cost me $100.

Another little tidbit: A transplant costs around $500,000. Medicare will cover a dialysis patient for the rest of their life on dialysis at $250,000 a year. Medicare will cover the prescriptions (usually around $3,000 a month) for three years post-transplant, around $100,000, and then NOTHING. So, think about this for a second. I can be on dialysis for 30 more years ($7,500,000 – that’s seven MILLION, five hundred thousand). Or I can have a transplant with the initial cost of $250,000 to $500,000, plus three years of medication (which is required to keep my new kidney from rejecting, and that I need to keep taking for the rest of my life, not just for three more years).

My family has a genetic kidney disease that causes End Stage Renal Disease which is fatal if not for dialysis or a transplant. Two of my siblings have had transplants. My sister was doing well until the three-year period had passed, when she became solely responsible for her medication costs. She lost her job because she was out sick too many times (the result of other people’s “common cold” where she would end up in the hospital to save her kidney). (Fact: most people on dialysis lose their jobs because of all the time they are unable to be at their desks). She felt the only recourse was to sell her house, become indigent, and eventually become eligible for Medicaid because Medicare quit after three years post-transplant.

My brother had a transplant five years ago this April. The following is part of an email he just sent to me. I am fearful that the pending health care reform will further hurt the thousands upon thousands of people dependent on drugs or treatments to keep them alive. Will we all become expendable and our expiration tags pulled?

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Last Monday I called Group Health Pharmacy to verify that they would not bill a 3rd party drug provider, which they will not. Then I insured that they would be able to fulfill my prescription of cinacalcet at 90MG, once a day and that I would be able to pick up a 90 day supply, verifying that I would indeed need to pay $1954.50 up front. Tuesday I showed up at the pharmacy and the young lady at the counter showed up with the bottle, rolled her eyes and said, "Yikes!". This was the same reaction I got from the pharmacy clerk at Costco, where I had gone to pick up this prescription on the previous Saturday. As an aside CostCo couldn't sell it to me because when they ran my Group Health card the latter refused the payment stating that I had to go to the Group Health Pharmacy for this purchase (those assholes [Group Health] are really on my shit list, btw). Then the afore mentioned young lady said, "Do you know how much this is going to cost?" I dead panned her with my now stock answer, "It's that or die." There is no real come back for that. Then the young lady told me it would be $651.50 - to which postal, nuclear bombs went off inside me (that is a 30 day, not 90 day supply).

Now I know it wasn't her fault, however the previous day I had spent almost 1 1/2 hours on the phone with three different people from Group Health verifying that the prescription would be correct and waiting when I showed up. Really. How does Joe Paying Customer get a mega buck giga corp to listen to him? It wouldn't be that huge, but I have already been shunted down to their pharmacy rather than a pharmacy of my choice, and once I get home I call my 3rd party to tell them I have the drug in hand and would they please send a reimbursement form, which takes 7 to 10 days to arrive, which I then have to fill out, affixing the original receipt plus the sticky prescription label from the bottle, then mail and wait an additional 4 to 6 weeks for reimbursement. Now, because they only coughed up 30 days I have to do this all again on April 1.

Anyway, bottom line, the drug costs $1303.00 per 30 day supply. Group Health will pay 1/2 leaving $651.50. The 3rd party (which happens to be the drug manufacturer) will then pay $500.00 leaving me with the remaining $151.50 per month for this single medication. That is on top of an addition $66.66 for the rest of my medications for a total of $218.16 per month. It could be worse, but, damn - that is coming close to a car payment, and the Wife really needs a new car.

However, the reimbursement form arrived in yesterday's mail which made it only 7 days and I have filled it out affixing all required labels. So, now that Susan Delfino (of Desperate Housewives) is going to be getting her transplant (oh, poor thing) I wonder if the writers will bother following up on how that only solves this handful of problems, but creates a whole new set to deal with.
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