I'm fine. Fine. Just fine

May 2012

So, I started my day by visiting my regular doctor for that coveted annual female exam. And for the first time, I had to answer a form provided by Medicare as part of their Wellness Program. First question: Are you depressed? And I thought, hmmm, I might be depressed, I dunno. I’ve got this dialysis thing that I try to play down as a trivial little routine I do, but it gets kind of adventurous when your blood pressure crashes right before you are finished and to remedy that problem, they add back some of the fluid you were trying to take off, so that you leave dialysis heavier than your goal and you know that you’ll have to have even more fluid removed next time, but you will crash because you are having too much fluid taken off, and – etc., etc., etc. That might be a little depressing. So. . . . . . No. I’m not depressed. Next question: Do you need help handling your money? Well, I could use some more money so that I could actually handle my money before pissing it away on bills and more bills. No. I don’t need help handling my money. Several more questions later, and I feel depressed and elderly, which makes me feel more depressed, but I persevere and finish the questionnaire. My doctor says I’m doing great and does the ultimate test and we’ll wait for the results, and lately my test results have had things in them that I would rather not have and we’ll have to do more tests to see where things are going. (And then I pause to think about that stupid are you depressed question. And then I go to my pitiful job that’s not a real job, in that I’m paid minimum wage, I have a dog at my feet and two cats wandering around my keyboard, and kitty and doggy treats next to my pens and sticky notes. And at closing time, I am told they can’t afford me and I’m laid off!!! Now back to those two questions. I think I’ve changed my mind.

My Left Kidney

After reading several stories recently about individuals on dialysis and their different methods of seeking a kidney transplant, I have decided to join the growing crowd.  So I am modifying my blog, which I started as a series of stories about my kids when they were little.  Then, over the last three years, my blog has drifted to focus entirely on me.  And my kidneys.

I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney.  Eventually, I had both kidneys removed because they were so large (18 pounds total).

I have been on dialysis for three and a half years, starting in September of 2009.  I lost my job as a result two months later.  Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications.  It's a rollercoaster.  I will have a couple weeks, where everything is just right.  And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash.  Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session.  And finally, again, I'll reach a point where I think, this is just right.  But Murphy's Law prevails.  And none of us (my seatmates) is exempt.

So - this blog is slightly revamped now.  We'll see how this goes.

To Be, Or Not

Yesterday, my seatmate at dialysis talked to his doctor about planning on NOT coming back to dialysis because the site in his arm is so pitiful and they spend about an hour trying to get it to work and the blood flow to be adequate enough to dialyze.  I instantly went back to when my Dad had the same conversation.  On the 10th of December, 1993, the docs told him they had fixed all they could fix and this was the last spot on his body that could be stuck with the two needles required in dialysis.  That was a Friday and it was my older Army son's 21st birthday, stationed in South Korea.

Dad announced to us on that Friday that he wasn't going back to dialysis.  Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid.  Coffee.  Nuts.  Strawberries.  Orange juice.  All the liquid he wanted to consume.  He was happy and actually the healthiest I had ever seen him.  Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes.  I think it was the right decision.  He had little quality left to his life.  Sleeping most of the day.  Being confused when he was awake - thinking that whatever was on television was happening in reality.  Using a walker.  Wetting himself.  Not being able to eat much of anything and then throwing up when he did.

So - I related to my neighbor but was sad about it too.  This one decision (to not come back because our sites quit working) is one we all face eventually.  So far for me - I'm doing great.  It's been three years (thirteen for my neighbor).  Transplant is the only saving grace and for my friend that is not an option.  He is too ill, veins too wrecked, to handle a transplant.

Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take.  With my insurance, that one particular drug is still $550 out-of-my-pocket a month.

It's daunting to think that maybe I'll have to make this same decision some day.  To not go back to dialysis.

Writing About Nothing

Sheesh - I've written nothing in the new year.  Bet you think I fell off the earth or something.

I cannot believe how time flies when I have nothing but mundane things to do with my day - all boiling down to dialysis.  I really, really try not to make it a priority in my life but on the other hand, it is a necessary evil to make it my number one focus.  There's all that food to NOT eat.  There's the blood pressure.  The heart rate.  Will the sites work TODAY.  And then, after having my kidneys removed, there's all that water to NOT drink.  The rule of thumb for my little food diary is, "if you like it, you can't have it."  Foods with potassium (think any citrus fruit, chocolate, dairy).  Foods with phosphorous (meat, eggs, dairy, actually anything you can think of).  I am limited to 20 oz of fluid a day (including soup, jello, ice cream, ice, alcohol).

I am my own bobblehead.

I plan out my food and liquid.  So - if I have dinner with the girls on Wednesday - I won't eat all day but I'll enjoy a steak and salad with my friends AND a coveted cocktail.  Lemon Drops are only 4 oz.  Woo Hoo.

In the meantime, I'm not writing.  Why is that?  Things have shifted so much in my life and the creativity gene just isn't functioning.

Just know that I am plugging along and actually feeling darned healthy!  If I could just have a second brain to worry about all that icky potassium and phosphorous and sodium stuff.

More Random Thoughts

I have just discovered that my favorite blog site, Huckleberries, has removed me from their blog rolls. So no matter what I write here, nobody will see. One blogger that commented to me two or three years ago, made his comment based on my experiences as a young wife in Val d'Or, Quebec. He was stationed there at the same time as my husband. He checks my blog every single day even though my writing has gotten poorer and more selfish, even though I write MAYBE once or twice a month. Every day. These are my random thoughts for today:

 * I still cry at commercials, but I'm getting better (until I found out I was deleted from the list of favorite blog rolls)
* I am walking further and further away from the house, my safety zone.  Once Mechanic Man called me on my cell as I was just reaching my goal of the edge of the school field.  He wanted to know how I was doing - and this is a straight stretch of road - so I told him I was fine and turning back - there he was standing in the middle of the road watching me the whole time.
*I feel measurably better today for the first time.  Usually I don't feel like I'm making any progress at all.
* Four weeks since Open Heart Surgery and I am HERE and ALIVE.
* Still seek prayer in so many areas of my body.  When it was just dialysis, I could go on with my day like I was a normal person.  Now, every twinge is a reminder that I MIGHT still have the bacterial infection.
*Treatments (IV antibiotic) will end their daily march on my life on Veteran's Day.
* I ask for God's healing presence to surround me, embrace my body head to toe, extend to wherever I am at - home, dialysis, store.  May that healing presence constantly do miracles in my body.
*Made cupcakes today - my first "cooking" since I went into the hospital.  (Of the several things I can't do, said my doctor, I can't cook - and I thought that was ironically hysterical.)  As in ROTFLMAO,
*Grateful for all my friends and family and especially those on the HBO blog.  I've known them for four years; we've met several people many different times.  I'm hoping one of them (the beer maker and BBQer) will feed my soul with his great, great beer and his melt-in-your-mouth pulled pork.  OMG!

Dialysis of the Day

Not very catchy - but I have noticed a rising count of "Dialysis of the Day" themes on different television shows. It's anything. CSI people announce that the alleged criminal that they have been stalking like mad men couldn't have done it because he was with his mother "at dialysis."

Even the Undercover Boss! One of the first episodes, the boss is disguised as a lowly janitor and is in tears during a lunch break while listening to the sob story of his co-worker's daily dialysis. (But note to readers - it is truly remarkable when you find someone on dialysis that actually has a day job, or night job, or some kind of job that works around the three-day-a-week dialysis stints.)

Then there was Susan from Desperate Housewives and her outrageous unlikely Lucille-Ball-Does-Dialysis routines - getting sympathy from a cop who wanted to write her a speeding ticket and instead escorted her to dialysis; the waiter at a class restaurant giving her someone else's coveted reservation because she was "on dialysis." And the totally outrageous "facts" that Susan would have dialysis for SIX HOURS, four days a week. Highly unlikely. (See my piece on her here)

Now there is Army Wives. Claudia Joy and her diabetes. I saw this one coming. I knew when she collapsed last week, that it was somehow related to her diabetes and I saw the writing on the wall. It would be about dialysis. One thing about this particular theme song. The writers have finally given some semblance of reality about dialysis. Only squeezed down into an emotional whirlwind of uber-drama and tears in less than 50 minutes. They added a touch, though, that I relate to.

I dreaded going on dialysis. It was such a big deal, and scary, scary, scary. The needles are Ha-Huge. Two of them. The scarring at the site is ugly and your clothes change - always wearing long sleeves. I just was petrified. And I kept it inside. I didn't talk about my fears. I held it in. When I finally went in to get set up for my first dialysis treatment, it happened that my nurse has the same thing I have - polycystic kidney disease. It is the most common kidney disease - and the most common disease to result in dialysis. Next to diabetes.

My nurse was taking my history and at the end, turned to me and said, "You have been on a very difficult journey." I wanted to weep with relief that someone else really understood. So, the drama on Army Wives wasn't far fetched.

It's just that those of us on dialysis want so much to lead normal lives. The "drama" is so not our reality anymore. If we are really lucky, we have day jobs. For most of us, dialysis is a routine that we simply do, without fainting, crying, weeping, gnashing our teeth. It's simply a "thing" we do and then go shopping, or gardening, or to work, or whatever we want that has nothing to do with needles, blood, nurses, kidneys. Nothing. We are normal if but for the three or four hours we are tied to a machine.

Being on dialysis is overwhelming in the moment. We have to watch what we eat (and the rule of thumb is, "If you like it, you can't have it.") We have to worry about too much Potassium. Too much Phosphorous. Too much Sodium. We have to watch our blood pressure. We have to watch our weight gain. We have to watch our liquid intake. It's just truly all-consuming. But we all walk out the door at the end of our treatment and dialysis doesn't come out with us.

So - we'll see how Claudia Joy handles this. Dialysis is NOT the dire-dark-cloud-hanging-over-your-head thing the writers keep trying to portray.

My humble opinion.
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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.

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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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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A Life Unscripted

Do you ever have a script for your life - something you plan for and expect and at the end of the day, nothing went as it was written?

My life is like that most of the time. I have intricate, detailed plans for my day and how it is going to go, positively, my way. Why don't the actors in my life read the script!?! I ask you!

I have a plan for dialysis, when I switch over to "real" poke-you-with-needles dialysis. I have a tech who is absolutely perfect. He's thorough, he's detailed, he's an excellent needle poker - his patients say he is virtually painless. So, he is who I planned for my attack.

He's quitting in three weeks. March 19, to be exact.

This was not in my script. No way. He was supposed to be The One. All the others are novices, and I've heard the winces and moans from their patients.

My fistula is almost "done" maturing and the nurses are chomping at the bit to get me started. Now, my plan is to hold off for another two or three years - unheard of in temporary access site legends - these sites are only supposed to last three months and mine is going on 18 months. Another 18 won't kill me, maybe.

I would like someone to apply for the replacement poker - skilled in needle control. Tall, dark, and handsome would help. This is, after all, my mini spa and I would like to carry on that image.

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Desperate Housewives are Desperate!

Oh, let me count the ways I used to be a fan of Desperate Housewives. That's right - past tense. After tonight's episode, I quit.

I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”

And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.

I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.

I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”

I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.

I quit you, DH. Quit!

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Healthy? Sick? Which is it?

There is a fine line between being healthy and being sick. At least, in my new life as a dialysis patient. That word, patient, is part of the problem. Being on dialysis doesn’t mean I have some disease that makes me sick. I’m actually very healthy. I’m just the right weight. I don’t get colds or flu. I have had every test you can imagine to become eligible for the transplant list – and they don’t allow sickies on the transplant list. So – am I a patient? Am I sick because I’m on dialysis?

I think it all boils down to attitude. If you think you’re sick – you probably are. If you have cancer, you are sick. You will get treatment and you will get better. (Ideally). Being on dialysis is not a cure and yet it’s a treatment. I will never get over kidney failure. I won’t get better. But I’m not sick.

Now I am progressing along this journey of dialysis to the point that I will have what I call “real” dialysis. Right now I am having “not real” dialysis – in that I am not poked with two needles to get access to my blood. I have a “temporary” access site that is a catheter that splits into two tubes that are used for dialysis – no needles. But it is temporary and the nurses and techs can’t stress it enough – t.e.m.p.o.r.a.r.y. Not permanent. Not real. The catheters are famous for failing, clogging, or becoming infected. So, the “real” method is through a fistula – where the veins are prepped and brought closer together in a certain part of your arm (in my arm, it’s the crook of my elbow – you know, that really tender place that they ALWAYS draw blood from – that tender place). Once my fistula heals, about two months, they will start “real” dialysis, where they will insert two 12 gauge needles about an inch apart, for blood to go out and clean blood to go back in. So, every time I go in for dialysis, three times a week, I will be stuck twice with two LARGE needles.

So, needles make me think, I don’t know why, but they make me think I’m sick. I’m having to rethink my thoughts on getting hurt to get better – only I know I’m not getting better, I’m just getting another form of dialysis to keep me alive. It’s a paradox and one I can’t wrap my head around – yet.

A little update

I indeed had surgery to replace the catheter in my chest. I broke a record in keeping what is commonly known as a "temporary" site. All the nurses and techs kind of jump up and down about that, like, you KNOW that is only a TEMPORARY site, like, you may implode any second with that TEMPORARY site.

Yes, I know it's temporary and that is why I am pretty particular about how well you techs take care of me, and how well I take care of my site when I'm not with you. :)

Anyway, a very long day spent with "minor" surgery on my "temporary" site. They removed the old catheter, which my skin had grown around, like, well, a second skin. They replaced the catheter with a new one, to which my skin will again grow attached, like a lover. I went nearly a year with my old catheter buddy. And since my experience was quite rough for something so minor - I am going in soon to have a fistula (commonly known as a "permanent" site) prepared in my arm. Another "minor" surgery.

Anyway - a relatively minor procedure in this bumpy ride called dialysis. The alternative is lilies on my coffin. I don't like lilies.

Just saying.
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No Pressure

People are fairly used to seeing me upbeat and positive. I strive to have a good attitude about everything. In working up a mission statement for myself, I came up with this unbelievably high standard, even for me, to “Live to Inspire.”

No pressure.

And then dialysis became a key integral part of my life – in fact, life saving. Now that I have come to that albatross looking so much like Mount Everest, and unconquerable, I have found the experience to be downright pleasant and restful. Absolutely no pressure!

And then, recently, I actually had No Pressure!!! I’m sitting there minding my own business, watching something banal on tv, when the alarms on my dialysis machine go off, red letter warning signs are flashing, and I look over and see my pressure is 80 over 40. Whoa!! That is very low pressure. Heart’s barely beating at 40 beats per minute. And I’m thinking it must be someone else’s machine, because I feel pretty good - not like I'm going to beat my last heart beat in about 30 more seconds. But no, it’s ME! Then every 15 minute checks start and it’s STILL going down. So they quickly stop the dialysis, give me extra fluids to replace the fluids they removed, and I start to feel normal again.

Talk about pressure.

And then the next time, well, I’ve got pressure to spare. I could give my pressure to several people and still have enough left over to keep my heart beating. The heat’s on, I’m thinking to myself. The pressure is on. And rising. 260 over 120. Stroke time. And with my doctor arriving, the pressure doesn’t ease one little bit. Finally, dialysis is over and I’m told to wait until that top number goes down below 200.

No pressure there. I wait. And I wait. And my anxiety is just exploding and I’m thinking that there is no positive thought powerful enough to calm me down. And I wait. Wait some more. And finally, after exactly 60 minutes, it hit 198 over 98 and I kicked back my chair and ran out of the building.

The last two times were perfect – 120 over 60. Heavy sigh.

There’s no pressure like worrying about your blood pressure and then having no blood pressure makes No Pressure a high anxiety stressing hope-I-don’t-die type of heavy duty pressure.

Hopefully, a weekend with friends at Blogfest 2010 will ease all that pressure!

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I'm Coming Back

I’m coming back around – slowly. Now that I have made the step to actually go on dialysis, the fear and dread has gone away. It’s really not a big deal! I get up, brush my teeth, get dressed, go to work, head out to dialysis, get hooked up, sit still for three and a half hours (and THAT is the hardest thing I have to do), go home, fix dinner, watch tv with Mechanic Man, and feel better than I have in months. I’m not up to snuff yet – and have had a couple set backs, because I was seriously being poisoned by toxins. It will take a while to get that all out.

In the mean time, my dialysis clinic is setting up dialysis for me in Orlando next week. By then I should feel much more perky and will enjoy the sights and sounds of Disney World and Epcot.

The gals I am traveling with have been watching over me like hawks. I get sporadic telephone calls from one or all four of them, asking me how I’m feeling today, if I’ve packed for our trip, if the dialysis is working. Just now received the second call from Kathy. We have a mutual friend who lives outside of Orlando – Art is close to all the other gals having met them at Alcoholics Anonymous for Spouses. They bonded, started skiing together, becoming deep confidants of all things weird with being single parents, dating, marrying, divorcing – Art and the girls stuck with each other through thick and thin. He will drive me to my dialysis appointments. Hallelujah! One less detail to worry about.

So – see – this just isn’t a bad thing at all.

Going down the drain

Welcome to DialysisLand, best described as a room full of people needing to have their blood washed and toxins removed, all in a sterile setting with the humming of machines, swooshing of nurses (who call themselves techs), and the background sound of water whirling down the drains, washing those bad toxins into the sewer system.

We patients are simply required to sit still for three and a half hours or longer, while all this scientific wonderland of activity drills past us, ticking, ticking the time down to when we get “unplugged”.

It starts with us getting “plugged in.” The tech and her co-workers go through a flurry of sanitation procedures, putting on gloves for one thing, whipping them off, putting on a new set for the next step of exposing my “access site” (direct line to my heart for all my frenemies’ handy knowledge), masks go on (on me too), something is fiddled with, gloves go off, new set goes on, more fiddling, as I divert my gaze to something benign, like the ceiling lights (because if I take my gaze anywhere else, I see other people, other machines, other techs, gloves going off, going on). So I look at the ceiling lights, while Heparin is flushed in my two access sites, then blood is drawn for lab work (first time EVER that I’m not poked), and finally my lines protruding from my access site are snapped onto lines going into the dialysis machine and the wheels start turning, my blood effortlessly leaves my body to go on its own little cruise, taking with it excess fluids, nasty toxins, and anything else I could do without.

After your “run time” is done, the tech does a reverse of the sanitation process, not as many gloves, but still the flurry of fingers, clicking through different tubes and connections, until finally you are officially unplugged. And after all that medically miraculous activity, you simply walk out the door to your car, stop at the store for groceries, and go home, as if you just spent the afternoon sitting at a spa getting your nails done.

So it isn’t all that traumatic and awful, really. I’ve dreaded this day, the official first dialysis. It does have a major impact in my life – for the rest of my life. There is a loss I can’t quite explain. And I have these two tubes hanging from my chest, making me feel very much like a Borg. And the image is only reinforced when I get hooked up. I half expected the 16 of us in the room to universally commune as one. But there is also the feeling that it is us, the Nouveau Borgs, who are being assimilated.

For days now, I have been, you know, sitting back, trying to mind my own business and not dwell on this dialysis thing. Trying to just make my life as normal as possible, cleaning the house, going to work, reading a book, watching a favorite TV show. When something innocuous will happen – the plot will turn just a bit to something sad – just a little – and I’ll sit there and tears will well up and I think, o boy, if I start crying right now, I will not ever stop. Today, at lunch, I went home and scrounged around for cold weather clothes for our bi-annual trek to Monroe, Washington and car parts heaven for Mechanic Man. I’d turned on the TV to a movie I love – Little Women – and it was right at that moment when Beth discovers that the Hummel baby just died of Scarlet Fever and she thinks she has it. WAAAAAAAAA, the tears flowed, I couldn’t stop, I cried and cried and cried.

Ok, I feel better now.
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My Kidneys and Me

Big Bully Kidneys
or
Kidneys R Us
or
Kidneys Rule

You didn’t ask but after talking with friends, I thought it would be a good idea to give you a basic easy-to-understand synopsis of kidney dialysis. First, though, you should probably prop your head up on something in case you fall asleep or go unconscious or into a coma or something. Prepare to snooze.

I am having to research my plight and decide which is the lessor of several evils.

Did you know that people whose kidneys are failing are experiencing the medical term: End Stage Renal Disease (ESRD). Sounds innocuous enough, doesn’t it. But wait! It says “End Stage” as in - death is knocking at your door, big guy. When your kidneys fail, you need to find some alternative to just sitting back and letting nature take its course – because nature is done with you. Those two little organs (well, in my case not so little) have powers you wouldn’t imagine. Like creating red blood cells. Boosting your energy. Filtering waste. I’m very close to having no kidney function at all. I lay awake wondering what will be the tell tale sign that THIS is it; this is the big one; this is all she wrote, kid. Will I gradually just stop peeing??? Will my guts suddenly clench like a thirsty man in the middle of a desert with absolutely not a drop of water anywhere? Will I just not wake up? What??

So – I am researching the different methods of dialysis. First – you should know that there are two types of dialysis – hemodialysis and peritoneal dialysis. One is through your blood – one is in your peritoneal cavity between the membrane surrounding all your organs and your skin.

There are pluses and minuses on both. So, here’s my take. With hemodialysis, you have to have a fistula prepared, which is a surgically constructed vein utilizing your own vein and it is permanent – usually in your arm. In my Dad’s case, his fistula always needed “roto rootering” or it was relocated entirely to a new site – and there are limited sites. Dad ran out of sites. Also, with hemodialysis, you get two needle sticks every time you have dialysis, three days a week. Plus, getting a shot of epogyn for your anemia (which requires a monthly blood draw). It’s just poke, poke, poke, poke.

Ummmm, that looked like a whole lot of negatives. The plus, if there is one, is that you don’t do a thing. You just go to the dialysis center and nurses and techs will be happy to poke you two or three times; ignore you if the alarms go off until your neighboring dialysis victims start really complaining; stick you AGAIN with something to deaden the pain, but not quite, and then stick you for the start of dialysis, and then for good measure repeat the whole process when you end dialysis.

With peritoneal dialysis – you have to have a tube surgically inserted in your belly, with two little bumps that act as stops so the tube will stay in place – and eventually scar tissue will form around the little bumps and seal the deal. Viola! Your newest body appendage. Yippee. The plus with peritoneal dialysis is that you can do it at home. You can take it with you and do it on trips. At work. Anywhere your little heart desires. The drawback is that you feel pregnant. You have all this dialycate (the solution used to filter your blood) and your peritoneal cavity stores it until you replace it. You feel “stretched.” The documentation also warns that you will have to deal with your “feelings about your body image.” You will look FAT. I’m short enough that I will look very round. Just give me a shove in the general direction, and I’ll just roll there. I already have issues with my body image. Sheesh. And while I’m filling up with dialycate, my kidneys are casually increasing in size all on their own. It’s like girl friends pointed out to me – wouldn’t it be nice if your kidneys were located in your boobs? Mechanic Man would probably think he died and went to Heaven.

So – either of these is a difficult choice to make. One, hemo, offers me every other day off. But at the cost of hours every other day on dialysis, plus working a full time job (because kidney patients are not considered disabled), so I go to work at 8:00, get off at 5:00, go to dialysis at 5:30, leave at 9:00 and somewhere in there I will have a normal life with Mechanic Man. Right?

Or – I can do peritoneal and have my very own recycler machine humming away at night, connected to me through my new little belly button appendage, and when I need to get up at 3:00 in the morning because I can’t sleep, I go through the 30 minute process of closing off my tube, shutting down the machine – all while sleeping romantically cuddled next to Mechanic Man.

Ugh. And all the while I am thinking – ok, now, this should be like brushing your teeth – just a mundane, routine, dull ritual. But – this is the kicker – this will be my way of life for the rest of my life or until I get a transplant.

I’m leaning toward the peritoneal dialysis. Less burden on Mechanic Man, more ME time. So, what do you think?

By the way – I have A negative blood type. Just saying.
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Kidney Update #2

Here's my sad soppy saga. I am starting to go through tests to get on a transplant list. (no cancer wanted - if I have cancer, they'll just throw me away). Anyway - went to see the kidney doctor today (saw the dentist last Thursday and this last Monday for what can only be described as roto rooter of the gums, with anesthesia and nitrous). So I'm already kind of whacked out of shape.

Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.

Are your eyes falling out of your head yet?

So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.

I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.

I'm beginning to think I'm SICK.

I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?

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