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The Next Step

Michael 12 Comments

Welcome to another episode of As the Kidney Turns. When we last left our hero he had just been referred to the local transplant team for evaluation for a potential transplant. Yesterday he got the call to schedule that appointment.

Yes, I got the call Wednesday afternoon for a phone review and to schedule the first kidney transplant evaluation appointment! Even though I spent my career in health care and even participated in post-transplant processes (more on that in another post coming soon), this is going to be a new experience for me. I said I’d keep you in the loop with the process and we start here if you’re still interested in coming along for the ride.

The telephone interview ran a little over a half hour and included a review of systems (current health status and medical conditions, medical history, past surgeries, recent tests, and physical abilities and limitations), and a brief description of what to expect from the evaluation appointment.

The first contact with every new provider always starts with the review of demographic information – height, weight, date of birth, and those sorts of etcetera. One of the questions posed was actually the second time I was asked it this week and the first time was by Tax Guy. You remember him from the last post as one of the stops on my whirlwind appointment tour on Monday. What could a tax return preparing team and a kidney transplant evaluation team have in common? It was “are you working?” It was actually a two parter. First “are you working” and that was easy to answer. No. The follow up was more difficult. “Why?”

It wasn’t put so bluntly by either, but both had to put something down on their forms. The US tax return includes a space for “occupation” that must be filled. Since I am not working I have three choices: unemployed, retired, disabled. I’m sort of all three. I am not being employed to anyone’s good use.  I am old enough that I could retire but not so old that I can draw on pension benefits. And I am not working due to the loss of function that was required to perform my job. Since my income is from disability benefits rather than pension benefits I am disabled rather than retired for the purpose of paying taxes. So that satisfied the accounting world.

The transplant evaluation people need to know if I am physically able to withstand the rigors of the operation and recovery. Being disabled affects not only the need for the potential transplant but the response to the transplant and it’s after effects. A kidney transplant is different from a heart, lung, or liver transplant in that for most potential kidney transplant recipients, if one does not receive the transplant there is still another option to maintain life. Dialysis. It’s not a perfect alternative but for the patient who cannot tolerate the surgery or recovery associated with a transplant it is a means of replacing not the kidney but what the kidney does. Knowing that, it is in the patient’s best interest to not subject him or her to a major surgery that poses significant and severe risks if those will be more harmful than not having the transplant.

So, to make a long story short (which I almost always cannot and once again I fear I have not), in the medical world there are basic functions that I cannot perform on my own including walking and standing without assistance, the loss of my bladder and associated parts requiring me to rely on self-catheterization for what the bladder and other parts usually do, and the ongoing and chronic progression of Wegener’s Granulomatosis and its effects. In the medical world, I am also disabled. But enough of me is still functional enough and strong enough to, on paper, appear to be able to withstand the rigors of transplant surgery and recovery, I can now progress to the evaluation stage to determine if the theoretical transfers positively to the practical.

NationalKidneyMonth

Source: National Kidney Foundation

I’d be very happy and honored if you’d stick with me for that progression. Hopefully this will be the only time that you have to make such a journey. March is World and National Kidney Month. Even though my appointment isn’t until April I’m going to take it as a good omen that I got my call this month. You can make my journey yours and not have to make one on your own, if you remember to, in the words of the National Kidney Foundation, “heart your kidneys.”

Related Post:
First Steps (Feb. 15, 2018)

 

Late for a Very Important Date

Michael 1 Comment

Hey, I’m really late!  Sorry about that.

I (almost) always post on Monday and Thursday and yesterday was Monday and I didn’t. You might have noticed. If you didn’t, I’m crushed. And now I’m quickly running out of Tuesday if I want to be just a day late. I hope nobody has been traumatized by not having my ramblings to read but I have a good excuse.

You see, Sunday and Monday were killer days for me and not because I lost an hour sleep Saturday night. Actually I slept the same number of hours Saturday night as I do on any other Saturday night so what I lost was an hour of awake time on Sunday. But since I was out a couple of hours past my regular Sunday bedtime I got it and more back. That just made me want to sleep late on Monday but I couldn’t because I had a day’s worth of appointments to keep. I guess I finally lost that hour of sleep Sunday night. Maybe three.

So let me just tell you about my last couple days.

Sunday started as a normal day with my normal chores which usually include writing a post for Monday. But since Monday was going to include some time with the tax preparer for this year’s extraction I spent what would have been writing time gathering forms, receipts, and other dreaded paperwork. I would have written Sunday night but I was at a hockey game, hence the late bedtime on Sunday. I would have written before the game but I had Dinner with Daughter instead.

Speaking of the hockey game, two fans sitting to my left intrigued me. I think they were fans. I couldn’t tell because they were conversing in a language I neither understood nor even recognized which covers almost all languages other than English. And a few dialects of that also. But I think they were hockey fans because not only were they there at a hockey game, they were very enthusiastic about it. Cheers break all language barriers.

Also at the game, sitting in front of my daughter was a young fan and I could tell indeed he was a fan because he not only spoke English, he also spoke it in my regional dialect and he spoke it very loud. And from what I heard he’s going to be a really good hockey fan for a lot of years to come. I’d say he was around 9 or 10 years old and he was explaining the game to his (presumably) father. And explaining it correctly! Gotta love the young fans.

So that wiped out all potential writing time on Sunday. Monday was going to be filled with lots of doctors’ appointments and the tax review. Every 3 or 4 months I make the rounds of most of my doctors. Who I don’t see on one round I get to the following quarter. I like to see them all in one day so I can…well, I’m not sure why but it seems to work. So I thought I’d write a post between appointments. I had a pretty good chunk of time between appointments 2 and 3 and figured I’d sit in somebody’s lobby with my trusty tablet and peck away. Except…

Except I was hungry so I ate instead. I would have included visual evidence here but I didn’t think of it until I left the diner. It was a good diner. Diners are always good and this one even had its 15 minutes of Diners, Drive-ins, and Dives fame. If you ever get there be sure to have the Reuben omelet. Yum.

After lunch I had appointments 3 and 4 and then Tax Guy and that got me home just in time to be hungry again, this time for dinner. After dinner I sat down fully expecting to write the long delayed post when I saw that Roman Holiday was on TV. I love you guys (at least I presume I do if I was to ever meet you) but I am fanatically in love with Audrey Hepburn (regardless of the fact that I never met her either). That took me to the point of exhaustion and even though I love you (see above) I needed some sleep.

ImLateAnd then it became Tuesday. Tuesday is a dialysis day so I knew I had a few hours ahead of me with little (like nothing) to do so I thought I’d write this then. Once I got all hooked up and settled in I thought I’d check today’s paper, then the doctor was making her rounds, the social worker hers, then I went back to the paper, then I checked my email, then I remembered “I have to write a post!”

And this is what I came up with. Now go ahead and tell me I don’t love you guys (see above) (again).

Now I just have to go home, eat dinner (yes, again), proof this (absolutely!), and post it (finally.) You’re welcome!

 

The “Not Togethers”

Michael 5 Comments

I like yogurt. I like chocolate. I recently found out I don’t like chocolate flavored yogurt. Some things aren’t meant to go together. Even when not obvious, it soon becomes apparent that you are facing a combination that never should have been. Eventually the natural order of things will correct the imbalance and life goes on.

Every now and then, however, an aberrant pairing sneaks through and escapes corrective action. Sometimes they work. For consideration I give you oil and vinegar. Sometimes they don’t. Think pineapple and pizza. (Do not try to argue that point. If you disagree you’re wrong.) (Period.) Sometimes they should never have been put together in the first place, like good food with bad service in a restaurant.

Tuesday a friend of mine mentioned that she and her husband were going out for dinner. Since this was in celebration of their anniversary they had picked a new to them restaurant. I hadn’t heard much about it and since it was a dialysis day, I had 4 hours in front of me with not much to do. So I pulled out my trusty tablet, connected to the free guest WiFi, and did some research. Regardless of the source, I found consistency in the reviews. The food is very good. The service is below average.

What do you do with that kind of information? Going out to dinner is more than just eating. At a fine dining restaurant that goes without saying but what about at a local, family owned eatery. Good food coupled with a good wait staff gets added to the permanent dining rotation. Bad food brought by disinterested servers is equally a no-brainer; there is no reason to ever go back. Pleasant efficient wait people serving bad food is a little challenging. You don’t ever go back and spend money on disappointing food but you should slip the name of a good restaurant to the waitress in hope of a career upgrade.

But the good food/bad service establishment can be problematic. It’s hard to argue with good food. On the other hand, with a little planning and some care and attention, you can make your own good food in your own good kitchen. And as I already noted, going out to dinner is more than just going for the food. Service is called service because you expect to be served. And you want to be served well. You can’t separate the food and the delivery.

YogurtIf the server and the cooker are related you absolutely take the establishment off your future consideration list. Otherwise the decision is difficult. As much as you want the tasty morsels you can’t subject yourself to bad behavior to get them. Maybe you give them one more chance and see if the owner saw the errors in his or her earlier hiring practices and has upgraded the front of the house staff. On the other hand, if a subsequent visit reveals the same poor presentation, well that’s a combination that just has to go.

Just like chocolate yogurt.

 

Suiting Up

Michael Leave a comment

Twelve is a very important number. There are twelve months in a year, 12 animals represented in the lunar calendar, and twelve gods resided on Olympus. An American jury has 12 members; a Canadian football team has 12 players. There have been twelve men who walked on the moon. The Bible speaks of the Twelve Tribes of Israel and the Twelve Apostles. Beowulf has 12 followers, Thorin has 12 dwarfs, and there are 12 generals in Paradise Lost.

And in twelve weeks it will be Memorial Day.

What? Memorial Day? Yep. In 12 weeks America celebrates Memorial Day, another holiday no American gets to celebrate with a day off except for government employees but, and this is important, a day all Americans not lucky enough to live in Florida, Arizona, or Southern California get to celebrate with pool openings!

I thought this year I should celebrate Pool Opening Day with a new pair of trunks. Somewhere along the way, men have gotten the short end when it comes to swimwear. It may run from the classic Speedo and all that threatens to blind you when you think of most men in a Speedo to the classless board shorts and all that threatens to blind when you know those things are going to fall off at any moment. But between those extremes are the basic trunks in dark solid colors or inoffensive prints. Take reasonable care of them and they will last 40 or 50 years. And stay stylish throughout that time.

But only a short trip through the Internet’s e-mall and I saw that boy, was I wrong.

I knew I wanted something more distinctive than basic blue swim shorts and in an uncharacteristic fit of silliness (as opposed to a fit of uncharacteristic silliness) I typed “funky trunks” into the search bar. I didn’t know there is an actual company called “Funky Trunks” specializing in funky trunks. I guess technically Funky Trunks is a trademark of the Way Funky Company of Melbourne, Australia from where they supply funkily styled trunks to swimmingly adventurous men in Australia, Canada, throughout the UK, and in the USA, and maybe in a few other countries too. I stopped looking when I saw how much they cost for how little material they use!

NotMe

Not me in not my new suit

I won’t pick on just the branded funky suits and their high prices. All men’s swimsuits have gotten more expensive than the last time I went recreational clothing shopping.  To me, $60 (US) seems like a lot for something to wear to the pool. But I hadn’t bought any for a while and then it was probably at a store with “mart” in the name on an end of season clearance rack so what do I know.

So then I thought the couple pair I have will have to do until sometime this fall when the end of season racks are filled with funky style trunks. Or maybe basic blue.

 

Working It Out

Michael 5 Comments

Every now and then I get it into my mind that I should go back to work. Most of the time that happens when I’m asleep in the form of a dream (or nightmare if you will). Some of the time it happens when my every so often disability recertification comes in the mail. In the past few days both of those things happened. And then I thought, if I had to, what would I do?

I couldn’t do what I used to do or I’d be doing it. Whatever it would be it should be something that I don’t have to think much while I’m doing it. I had a lifetime of thinking. I’d want something mostly brainless.

It shouldn’t be anything that requires a lot of sitting. I spend so much time sitting during dialysis (so I can “live a normal life” while I’m not on dialysis) and after dialysis (so I can recover from dialysis) that standing is actually refreshing. But it couldn’t be anything where I had to stand for more than a half hour at a time. I’m good on my feet in one place for around 30 minutes and then I fall over. Sometimes it’s a little more, sometimes a little less, but 30 minutes is a good starting point. Or more appropriately, stopping point. Limited standing would be good.

The local dollar store had a sign up for a part time cashier. I love dollar stores and it would be a financial plus for them since my little salary would certainly turn into dollars spent there. But I’m certain they don’t have half hour shifts and I’m just as certain they wouldn’t take kindly to me teetering, tottering, then toppling a few times each day, ADA regs notwithstanding.

HelpWantedA great standing job would be TV weather person. They only stand in front of the big screen for 2 or 3 minutes then it’s back to checking the weather app on the phone to prepare for the next segment. I can do that. I even already have the app on my phone. Two actually. The one that I wanted and downloaded myself and the one that magically showed up the last time my phone automatically updated itself from wherever it automatically updates itself. If I would be willing to move I can probably do it without either of those apps. I’m certain that in San Diego I can go on air and say “tomorrow will be warm and sunny,” and be right 362 days of the year, 363 on leap years.

A short period standing job would be good but would more likely still have to invented. What else is out there to do? Driving. I like to drive and I know my way around town. I could drive something, but not for a cab company, or worse, an app based ride hailing service. I wouldn’t even pick up a hitchhiker back in the last century when thumbing on the open road was right between VW bus and Greyhound as the most popular means of interstate travel. Depending on the kindness of strangers is not my idea of gainful employment.

Limo driver might work. Oh the people who climb into the back of a limousine are just as strange as those crawling into the back of a taxi and then they aren’t nearly as strange as those crawling into the back of a taxi. You can tell that by the way even though some limos have glass partitions between driver and passages they are rarely bullet proof. Car lot courtesy van driver is another stranger driver job I can get along with. Again, they are still strangers but the people I would be working for are holding the strangers’ cars hostage. The problem is that sometimes those drivers double as lot attendants and that means clearing cars of ice and snow in the winter and washing them year round. That makes it all much too much like a job.

What else? I thought I’d find out and check some ads. I was still interested in possible jobs but not that interested that I wanted to open up a browser and check a real job site. I discovered that there are still want ads in the paper. A lot of them are for security guards. That wouldn’t work for all kinds of reasons. Security guards either sit a lot (see above), stand a lot (see above), or walk a lot (not even considered enough to be included above). No to guarding.

But I found a job in the paper that seemed ideal. It was titled “staffing assistant” and the responsibilities included “reviewing and recommending job applicants, and making staffing recommendations.” I figured I could review my background, recommend they hire me, then further recommend my job to be home based and with no additional responsibilities.”

Now we’re talking dream. No nightmares need apply.

 

Righting Wrongs

Michael 2 Comments

I made a serious error in today’s post extra on the World Trade Center bombing on Feb. 26 1993 obliquely referring to the terrorist attacks of America on 9/11 as happening on Sept. 12, 2001. Of course those attacks took place on Sept. 11. The original post has been corrected and the edited addendum is presented here.

——-

Say World Trade Center terrorist attack and your first thought probably goes to Sept 11, 2001. But that wasn’t the first terrorist attack on the New York skyscraper. That came 25 years ago today on 26 February 1993 when 15 people conspired and parked a rental van packed with 1200 pounds of explosives in the parking garage beneath the towers. Six people including a pregnant woman were killed and over 1,000 injured in the blast that also caused over $590 million in damage.

The FBI called the van bomb the “largest by weight and by damage of any improvised explosive device that we’ve seen since the inception of forensic explosive identification.” The World Trade Center’s sprinklers, generators, elevators, public address system, emergency command center, and more than half of the incoming electricity lines to the buildings were destroyed in the attack.

Sometime today please take a moment to remember the victims of the forgotten attack on the World Trade Center.

WTC

Photo: Jeff Mock via WikiMedia Commons

 

 

Land of Plenty

Michael 7 Comments

I have seen the Land of Plenty and it doubles as my apartment. It’s closing in one three years that I downsized from a 2000+sq.ft. house to a 700sq.ft. apartment and it was time to take stock of that which I decided was worthy of making the change with me. So I did and I discovered that I should have put downsize in quotes.

Clothes are easy. If you haven’t worn it in a year you’re not going to wear in another. Tuxedos excluded. But how do you know when it’s time to let go of those bath towels. I don’t know how I decided which towels to bring with me on the move but however it was it was not well thought out. I ended up with 14 bath towels in my linen closet; there are also 12 hand towels and 14 wash cloths. (No, I don’t have an explanation for the discrepancy. Just go with it.) I can change full towel sets every day and not be concerned with having to do a load of bath linens for half a month.

Bed linen seems to have actually grown since my life reduction. Still I am the proud owner (ok, I am the owner) of seven complete sheets sets each with 4 pillow cases, two comforters, 4 blankets, and two dust ruffles. I know men who can’t even recognize a dust ruffle. Why do I have two? That might have been appropriate for a three bedroom house but for a single bedroom hovel, per sleeping space I probably outpace some major hotel chains.

KitchenToolsThe kitchen hasn’t been spared its own review. There I’ve had the benefit of slowly transferring pieces to my daughter whenever she says things like “I really need a new blender,” and I can come back with “Before you go to Target you can have one of mine.” Even shifting a blender off to her I still have two (one standard, one immersion). I also still have two food processors and two slow cookers even though she has taken possession of one of each of those, and for some reason I have two coffee makers.

Somehow the number and sizes of my pots and pans are appropriate but the kitchen tools are out of control. Do I really need three potato mashers? I rarely even eat potatoes. How many slotted spoons should grace one small kitchen? If the answer is four I have just enough. Spatulas, turners, and spoons fill two utensil crocks on the small counter. One drawer holds three zesters, two peelers, and a garlic press.

Even the glassware hasn’t escaped consideration for further reduction. A man who doesn’t drink does not need a complete set of 4 each red and white wine glasses, champagne flutes, and martini, rocks, and pilsner glasses. And an ice bucket.

Yes I think it’s time for another elimination round. There’s always the tried and true garage sale. I certainly have enough to make for an interesting afternoon of browsing for some people. I could donate them all to the local St. Vincent dePaul Society. If I did I’d not ask for a receipt for taxes or I’d certainly be setting myself up for an audit down the road. I could post them for sale on line but then I’d have to worry about taking pictures and shipping or meeting a complete stranger in a parking lot to hand over a stir fry pan. No I think the easiest thing to do is just leave them all where they are and let my heirs fight over them when I’m gone.

By then they should be museum quality antiques.

———-

WTC

Photo: Jeff Mock via WikiMedia Commons

TRRSB Extra: Say World Trade Center terrorist attack and your first thought probably goes to Sept 11, 2001. But that wasn’t the first terrorist attack on the New York skyscraper. That came 25 years ago today on 26 February 1993 when 15 people conspired and parked a rental van packed with 1200 pounds of explosives in the parking garage beneath the towers. Six people including a pregnant woman were killed and over 1,000 injured in the blast that also caused over $590 million in damage.

The FBI called the van bomb the “largest by weight and by damage of any improvised explosive device that we’ve seen since the inception of forensic explosive identification.” The World Trade Center’s sprinklers, generators, elevators, public address system, emergency command center, and more than half of the incoming electricity lines to the buildings were destroyed in the attack.

Sometime today please take a moment to remember the victims of the forgotten attack on the World Trade Center.

 

Is it just me . . .

Michael 6 Comments

I was going to end the title here with “…or is it chili in here?” in honor of National Chili Day (get it, is it chili in here? I crack myself up), but then I thought better of it and opted not to start a new Internet controversy. There are arguments enough on line that I don’t have to add fuel to the fire and start shouting matches between the bean camp and the no beaners, fights between the beef chunkers versus the ground beef crowd, or debates over whether vegetarian chili is or is not mutually exclusive. No, I’m not going to be the cause of any more strife along the world’s interwebs.

Instead I thought I’d pose a more calm inducing topic to the world today. Does anybody else think that snowboarding should be banned from the Olympics? Like forever. Plus an extra 20 years for good measure!

It has nothing to do with whether snowboarding is a “sport” and are snowboarders “athletes.” That would be no and no. But neither is the biathlon and I have nothing against that being in the Olympics. And before anybody gets too excited, curling is a sport and curlers are athletes and it without a doubt belongs in the Olympics. (Contrary to popular belief curling is not just shuffleboard on ice. If anything it more closely resembles bocce on ice and it is a travesty that lawn bowling is not an Olympic sport in the summer games yet beach volleyball is. But I digress. If you’re interested in finding out why bocce belongs in the Olympics you can read what I said about that here.)

SnowboardingIOC18So what do I have against snowboarding and snowboarders? Nothing personally. It can be entertaining and they are talented but it’s not a sport. It cannot be quantified. There is no time or distance measured to objectively determine the winner. If there was a downhill snowboard race and the winner determined by who gets there first, that would be a sport worthy of inclusion in the winter games.

Ah ha! you say. What then about skating? Sorry, that has to go too. It’s been around since the first winter Olympics but it should have never been allowed and it has to go. If the figure skaters and ice dancers (does anybody really know the difference?) want to compete for a medal on ice, let them try speed skating or hockey. Or curling even. Otherwise I’ll be happy to enjoy their contributions to a genteel society when they show up in town with Disney on Ice. While we’re at it, freestyle skiing is out also as is ski jumping unless they agree to ditch the style points and award medals only for distance. Not giving yourself a concussion on landing would be nice but not essential if the length is there.

The Olympics have hung around almost 2000 years to celebrate the fastest, the strongest, the highest. Not who can spin around in the air with a surfboard strapped to his feet the prettiest.

Thank you for your unwavering support and agreement.

And Happy Chili Day.

Ground. With beans.

And yes, it is.

 

Happy No Not That

Michael 6 Comments

Today is Presidents Day in the United States. Actually it isn’t. It’s Washington’s Birthday but nobody calls it that anymore and I won’t dwell on that here because I already dwelled on it here. Regardless of what you want to call it I’m not going to talk about it here and not because I have an issue with the weirdo in office now. I have issues with all the weirdos who’ve been there except maybe Washington but I already took issue with those issues here.

No today is more important, more universal, more significant than presidents. Lots of countries have presidents. And why do we feel we have to “honor” these career politicians anyway? Do other countries with presidents have a special day set aside to remember the contributions of everybody who ever was crazy enough to take a job no sane person would want?

What about the countries without presidents? Are there King Days in monarchies? Are there Premier Days in oligarchies? Do puppet governments have Dictator Day? What about the countries with where the seat of government is more sofa-like with say a president and a prime minister? Who gets the day? Does each get a day? Maybe 12 hour shifts on the same day?

I’m sorry but there are just too many issues with Presidents Day. Leave it at Washington’s Birthday about the rest of them. You guys in other countries are on your own. Now to be truly universal, seriously inclusive, honestly honorable, let’s celebrate the day that everybody can get behind. Come on and join me in celebrating…..

Happy Fiftieth Anniversary to Mister Rogers Neighborhood!

Knowing that we can be loved exactly as we are gives us all the best opportunity for growing into the healthiest of people.   -Fred Rogers

Although Mr. Rogers Neighborhood was first broadcast by what would become PBS on February 19, 1968, Fred Rogers first hit the airwaves from Toronto with his Children’s Corner in 1961. His gentle manner and strong devotion have done more for America than all of the presidents we’ve elected since then. We would have done well to more often hold him as one to emulate rather than ridicule. They say in America anybody can grow up to become President. But only one American ever grew up to become Mr. Rogers. While you are celebrating your extra day off take a moment to ask yourself who you have been more like as a role model for your children, grandchildren, nieces, and nephews. And knowing what you know now, who you would have more wanted as yours.

I could have written an entire post celebrating Mr. Rogers but there isn’t enough space available to me to say all the good things about this remarkable man. Our world is better because of his Neighborhood. Now if we could only get our country to follow suit.

Misterogers

Pittsburgh Post Gazette

First Steps

Michael 24 Comments

I did something last week I have never ever done in my life that may well change my life. Yes, even this old life. And even though it put things into play that will someday move very quickly, these first steps are going to plod along. I’m going to take you on this journey with me mostly because I don’t want to go and I think those here in my immediate world might need some help keeping me moving along.

Warning, this post actually has some personal information about me that I’ve never shared before. It is not recommended for the squeamish. (Or for those who might have developed any kind of respect for me especially when I reveal what a fraidy-cat I am.)

Last week my nephrologist put in referral paperwork for me to be evaluated for a kidney transplant. And I am terrified.

I’ve worked my entire adult life in health care, mostly in hospitals. I am the most rational human being when somebody asks me for an opinion, a clarification, or some information. But when it comes to me, I’m the biggest wimp in Fraidytown. I hate doctors and nurses and hospitals and medicine and machines whenever I am the focus of their attention. The only good people I see from a hospital bed are the ones who bring me food. Everybody else is an unwelcome visitor. 《Shudder!!!》Now I’m going to have to go through examinations and tests and (arrgghhhh!!!) needles to see if I get to be cut open and have more of my insides swapped out or get sent back to live a life of dialysis with its sharp objects and scary machines.

I hate dialysis. Let me see if I convey how I really feel about dialysis. I hate hate hate hate hate hate hate hate hate hate hate hate hate dialysis. And if one more person tells me “but it’s just a few hours a week” I will stab them with the needles that are thrust into me at each session.

Unlike other long term invasive procedures where an access port might be implanted under the skin to accept the needle used (say for chemotherapy), in dialysis the preferred method of access is your own vein. A surgeon cuts into your arm and brings the vessel from deep within the arm to immediately underneath the skin. Yes it is weird seeing your vein basically sitting on top of your arm and feeling it pulse with your, well, your pulse. Into this vein a dialysis nurse or technician inserts two needles about the diameter of a ball point pen, connects those to a pair of plastic tubes, and attaches those to a machine about the size, and with similar function, of a gasoline pump.

For the next three and a half hours I get to watch my blood zip around the room while it is rid of the crud we ask our kidneys to shed that mine decided to stop shedding. Add in the before and after procedures and repeat a few times a week and that’s why I hate dialysis.

But I also hate surgeries. Let me see if I can convey how much I hate surgeries. You get the idea. I won’t put you through that again. For the first 55 years of my life I had never been in a hospital as a patient. Never a broken bone, never a needed stitch, never even a false alarm brought me close to wearing a hospital gown. Then in less than four years I spent 18 months with my back end uncovered and endured four surgeries, only one of which I didn’t almost die during or shortly after. (True stuff there.) In the last couple years I’ve been back for numerous outpatient procedures and one additional full blown surgery (not death defying (whew!)). Familiarity doesn’t really breed contempt but it sure breeds a hell of a lot of fear.

Every surgery I’ve had has been complicated by a condition I live with that makes decisions for me every day. Seventeen years ago I was diagnosed with Wegener’s Granulomatosis, now known as Granulomatosis with Polyangiitis. We’re not allowed to use the W-word anymore because he was a Nazi. GPA is a rare type of vasculitis that affects less than 3 out of 100,000 people and is fatal without treatment. There is no cure but with various medications the inflammation can be abated. So we have a fatal, rare disease, without a cure, and after years of research somebody figured out the doctor who discovered it was on the wrong side in a war and shouldn’t be “honored” by having a rare, fatal disease, still without a cure, named after him.

GPA primarily affects two major organs, the lungs and (drum roll please) the kidneys. Yes, my kidney disease is not a result of the trauma of the surgeries or the cancer or hard living. It is from the Wegen– oops, from GPA. So in addition to the rest of the pending evaluation, I have to somehow demostrate that my chronic condition will not adversely affect a new (actually a used) kidney. I do that by taking my medicine and having regularly seduced blood work to measure the inflammation markers in my blood. More needles!

So, to make a long story short (I know … too late), I am about to embark on a process that will determine whether I undergo major surgery followed by a lifetime of drugs and tests, or continue with dialysis and a lifetime of big thick needles and multiple times a week treatments and general life interruptus.

And I want you to come along! Now don’t you just feel special?