El Milagro: I had called and Phyllis the Nurse said come in at 2:40 or so. Here I am pulling into the parking lot at about 2:45 thinking I have been taking advantage of the flexibility about chair time by coming in late too frequently. Now I am one of those people I used to complain about when I started: the people who meander in here whenever they damn well please. Hum? Is it the entitlement of the one-year-tenured-patient syndrome? Or am I just becoming lackadaisical about getting to a place where I get stuck with needles, sit around feeling my butt ache, and my legs twitch? I'll have to ponder this (Al and Richard: remember Ponder?).
Today is Bob Wills day up in Turkey, Texas. Damn! I’d like to be there too rather than sitting here attached to this machine. Old Steve the crazy English keyboard guy might be there. Today the population of Turkey goes from 500 up to about 9500 and the current Texas Playboys with Johnny Gimble raise their fiddles in honor of “the King”.*
Crystal the Tall Tech cannulates me and we briefly discuss our views about seeing reality, living in San Marcos, and being happy that school is almost over for the summer. Melissa the Perky Tech comes by to check my machine and reports she’ll be on the third shift next month. Ron the Nurse, remembering my last session, asks Melissa to watch my BP and let him know if it goes down below 100. Chris the Tech is here today too, with his loud and somewhat depreciating comments shouted across the room to other techs. I believe that in Chris’ world he is raising the spirit of the place with his antics. Its as if he is a sales rep for poseur. And, he should be able to exist in the world with the rest of us… I would only wish he’d whisper.
According to an overheard conversation Ron is having with another patient, there won’t be many chairs on our shift since we are taking on new patients. I see one today, I think. He is a Hispanic guy with a long braided tail down his back, and a yellow shirt. He evidently was here years ago, cause Carol asks him how he’s feeling and... it’s not well. He’s in the corner today, hidden behind a column, so I can’t observe him much. It’s like a grocery store in here today… people coming and going with their blue baskets of paraphernalia. Someone’s eating something I smell faintly… like in a grocery.
I’m reading the new Alex Delaware novel and am totally involved in it. Picked it up in the airport in Lubbock last week. Bad choice, money wise. I paid airport bookstore prices… but I couldn’t help myself. I’m cruising the store tiredly, looking around at the new political tomes and all of a sudden my eyes fall cross the thick new Kellerman** book and its as if it FLASHED neon at me. I was drawn to it hypnotically and HAD to buy it, even at the outrageous airport price. Oh well. I heard on TV last night that I am in the middle of the richest population yet; the middle-aged 60 year old baby-boomers. We buy books in airport bookstores and don’t blink an eye. So there!
Notes: In at 75.5 and out at 72.3... and my BP stayed around normal the whole time.
* “Turkey Will Swing This Weekend” retrieved April 2007 from the Amarillo Globe-News website, http://getout.amarillo.com/content/outings/042707_bobwillsday.shtml
** Jonathan Kellerman retrieved online April 2007 from http://www.jonathankellerman.com/
El Milagro: Got here late at 4:30 today, after driving in fast from Corpus Christi. This dialysis business doesn’t always mix well with the life of a traveling training troubadour. My BP is 142 over something: San Antonio corridor traffic stress + 80 mph, no doubt. I weighed in at 76.2 (that’s 167 lbs. folks) after two days of gorging myself on sea food at Snoopy’s* and Doc’s. I’m sorry I ate that last bite, but not much.
So, I’m late, and heavy and Carol the Tech negotiates with me to only take off 3 and save the rest til Saturday. I tell her I’m sorry she’ll have to stay til 9 and she says “thanks” and adds, “We’re setting you to finish with the others, since we have to flush the frazzletops tonight.” “Cool!” I reply. Nice tech!
So it comes to the fact that we are living in an ordered universe. We run around trying our best to make our appointments, as if our miniscule activity can change the flow of time, or influence the grand scheme that ticks along at it's own majestic pace. When will we realize that we are but pawns in the grand scheme of things? When will be sit back and accept that we will fit into the flow of the Universe in just the way we are supposed to? All the way back from Corpus from the time the girls were getting shrimp sandwiches at Snoopy's on our way out I was saying to myself, "We will move along at our own pace because we just have to keep moving. We will be on time or we will be late. It's just what it is. All things are already perfect and let's not fight it." We are not correcting course to have control, but to stay in the flow of the universe. The sooner we realize that the better off we are. 'Nam myoho renge kyo'... [all things according to (the Universe's flow)]
I settle in for a snooze after the long road trip and wake up for Survivor, of course. My boy Yao Man** is still doing well and that is enjoyable to observe. And then at about 7:50 pm my machine blinks it’s beeping and I’m done. Boy, three hours seems a LOT shorter than four hours. I am holding my poke holes for 10 minutes before Carol tapes them up, and zippo…. I’m outa there and on my way home.
Notes: In at 76.2 and out at 73.5.
* Snoopy’s retrieved online April 2007 from http://travel.yahoo.com/p-travelguide-3005289-snoopy_s_pier_corpus_christi-i
** Yao Man retrieved online April 2007 from http://www.cbs.com/primetime/survivor14/survivors/yau_man.shtml
(From My Memory)
April 24, 2007
Now it’s history and fading fast in my memory… but, last Tuesday was a horrible session. I can remember the feelings more than the actual events, although I reported them to several people the next day. As in other yucky sessions, I started feeling faint and clammy near the end of my session. My BP was down to 84 over 56 or some way low numbers and my feet were starting to cramp. Ron was the nurse on duty and Mat was the tech. Matt originally stopped the cleansing process and just ran the blood through the dialyzer but that didn’t work. Then they added some liquid and that didn’t help. Then Ron gave me some hot, salty chicken broth and that tasted terrible; like chicken broth ala salt block: picture a salt cup filled with thick chicken broth. Pffft! Finally, my BP raised to about 105 over something and I was able to stand up and wobble around. I got outa there about 8:45 and navigated home, only to crash out on the couch, totally wasted. In my delirious dreams my son, Johnny, is lecturing me: “We gotta take the good with the bad, Dad”.
Notes: In at 74.5 and out at 72.6
El Milagro: A new girl tech comes up and says, “May I stick you?” “Sure”, I reply, “…as long as you do a good job. (a few seconds) …and I’ll tell you if you don’t”. <-- I said that! The strengths-based constructivist trainer of hundreds of family counselors across the land! Can you believe it? I didn’t even catch myself in that moment and correct my statement. It was ten to twenty minutes afterwards that I caught myself and then I scolded myself in my brain. Can you see, dear reader, how quickly and unconsciously we all can slip right back into a deficit-based reality? And then we scold ourselves for it internally in a deficit-based stern parent voice. So, I sighed and said in a softer, more accepting voice, “It’s okay Jack. Every slip-up is an opportunity for re-commitment to the way.” I had been able, at least, to say thanks to her as she computo-doc’d my cannulation. That was more of a habit. And it is a good habit, I maintain, to thank all people who serve us in any way at all.
I was able to climb out of my kiva of gloom. Internally I sometimes imagine the above kinds of thought-u-lations as some sort of internal gnashing and cleansing and visioning such as our native peoples did in their subterranean kivas*. I am taken down there into the lower middle region of my own personal self brain/heart and wrestle around with my critical self (critical parent, negativity, glass half emptyness) in the dark shadowland. And as the fire gets going in the middle I quit the fight, settle into a long sigh meditation, and let it all out. Then comes the part where I jump up and run around crazy in the firelight and the shadows dance accross the hierglphed wall. I get speared with visions of possibility, and then cleansed by sweating out the demons of deficit, and finally am encouraged by the great spirit. Then I climb back out into the sunlight of a crystal clear New Mexico desert.
I am one of the last people to get dialysized today because I’ve been working on Katie’s Graduation Announcement. It is a quiet Saturday: I listen to KUT Live Set, snooze-a-nopolis, and then watch the first hour of Roman Holiday. Boy! Those were the days!
Update Since Last Post: Since my last post things have been the same and different… kind of like life in general. I got a good blood work report; both Potassium and Phosphorus are GOOD! (Phosphorous was 4.7 [3.5 to 5.5 is normal] and Potassium was 4.9 [3.5 to 5.5 is normal]). A few staff have left the center (Diane said goodbye to me and ensured me she is going to a better job) and maybe there are some new ones, like the young woman who stuck me today. It’s hard to tell. I ask a nurse, “Are you new?” and they reply “Only today”. I think new staff should go around and introduce themselves to the patients.
A guy that started dialysis around the same time as me has left the planet (He was a kinda scroungy looking guy who had a old worn quilt he dragged in and out with him and he reminded me of Linus in Peanuts). According to the gossip, he had open heart surgery, started missing his dialysis, and was found dead on his living room floor. Another old person passed away too, but I don’t know much about that one. We are a group of patients who pass through the center as most of the staff stand around serving us in the moment. And then we are gone. Some of us die and move onward in that frame. And a few of us get a new kidney and go back out into the world, like we are running out to recess. So it goes.
My yearly report still rests in my old G3 sitting over at Mac Alliance waiting for someone to merge the hard drive into our new silver tower Mac OS 10.something. When I get it, you’ll get it.
Notes: In at 73.4 and out at 72. (Blood pressure is more normal low rather than low low.)
* “Kiva” retrieved online April 2007 from Wikepedia, http://en.wikipedia.org/wiki/Kiva
Note: I have been considering my experiences over the last dialysistic year and began to draft a post about them and then my computer's hard drive crashed, so now you have to wait, dear reader. Soon I will be able to salvage some data from that old disc and transfer it to my new computer. Then I will transfer my musings up to this anniversary post. Stay tuned. <-- New ONE YEAR musings at the end of this post, added 8-29-07!
Also, yesterday, on my anniversary, Kurt Vonnegut died. This blog’s readers have no doubt seen many Vonnegut quotes throughout the posts, and it is only fitting to commemorate Vonnegut by remembering his thought on our purpose on the planet: "I tell you, we are here on Earth to fart around, and don't let anybody tell you any different."* The picture above was the only one I could steal from Google Images that showed the old geezer with wings, which I thought highly apropos.
El Milagro: Today Gladys cannulated me and Phyllis the Nurse stethed me. I sounded good to her. I told her about Vonnegut and we got into a discussion about all his great books, and then similar books, and then she asked what my favorite book ever is. I stopped and thought for a minute: “Wow there are so many excellent books… which one to pick right at this moment… which will come to mind first?” and I replied, “Duh! ……………………The Grapes of Wrath.” She hummpfed and said something like, “Makes sense”. She believes a person's favorite book is like a short personality profile of the reader. But I think you can't judge a book by looking at it's reader. Her favorite is one I can’t quite remember right now. The title is up there in my fuzzy brain somewhere, shifting about making itself almost known to me, but not quite clearly enough to label and spit out. I must find out from her and include it in this post. We both went on for awhile listing off favorite books, mine including The Glass Bead Game, Breakfast of Champions, Incarnations of Immortality, Illusions, etc. She did so too and we compared our picks. Phyllis and I don’t talk much these days and I miss that… but the place has become very busy for the nurses, so it seems she just shoots around from patient to computer to the back of the counter. The nurse's movement is similar to a pin-ball in a wacky game where the chairs are the pop bumpers and the front counter is a kicking rubber, and the staff are the balls being flipped around by the beeping machines, which of course are the jumbo flippers.
Survivor is on tonight and I begin watching it and then doze off in the middle. Dozing off during Survivor? it must be getting too boring for even me, one of their two staunch surviving watchers. I slept through the part where they divvyed up the one tribe into two teams and had the immunity challenge. I woke up to see 4 disappointed survivors heading up the trail to tribal council and then, after a short Q/A about who likes who, one got their flame snuffed. So it goes.
Notes: In at 75. and out at 72.8 Kgs. Standing BP at the end was 10 over -20. (gniddik tsuj)
* Robinson, M. (2007) Kurt Vonnegut dead at 84. Retrieved from the Washington Post website at http://www.washingtonpost.com/wp-dyn/content/article/2007/04/12/AR2007041201159.html
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
So, how can I characterize this past year? It has been a real drag on the family. The older kids worry about my health and Katie has even ruminated about her fears with her friends. Liz has had to adjust her whole life around my various disabilities, diets, medications, and schedules. And Shayna, on some level has to be careful how close she gets to her daddy (<-- my hallucination).
Anytime a long-term chronic medical condition invades a family it becomes a daily reminder of the fragility of life. We who have this daily reminder (like the fickle finger of fate) can likely think it is by the grace of God (Buddha, Brahman, Shiva, etc.) that we ae here every day to enjoy living. The sense of control and future planning of our lives is shattered. We no longer have control and we are reminded of that fact daily when we take our 10 to 12 meds and when we do our time on the machine of life.
When I had no ESRD I ofen went for months at a time without thinking of my mortality or having the spectre of death wiggling it's woeful way into my schema of life. These are my thoughts on my anniversary of starting dialysis.
El Milagro: Today Matt cannulates me. Dr. Venkatesh comes by with the crew doing rounds and answers my question about taking Tylenol for arthritis in my hand. She says it’s okay. I’m guessing now that old Moritz has given up doing the rounds, maybe because he got a bad rap on City Search: “…Dr. Moritz('s) ...bedside manner was appalling. He was often grumpy, humorless and seemed distracted -- as if he would rather be somewhere else. When I expressed concern about discomfort during a procedure, he actually scoffed at me, telling me "I did this procedure on a 28-year-old woman yesterday and SHE didn't need any pain medication."” Now ya can just see Moritz in this conversation and it does sound just like him. But, he thinks he's being cute and charming when he does that stuff. What a doc.
I napped until the News and then watched NOVA. Tonight was a fascinating segment about the mysterious cuttlefish* and their visual tricks. According to the narrator, this sea animal may be the closest thing to what we might find on an alien world. Wow: an alien-type thingy right in our back ocean! I am always amazed at the ways different species have evolved to exist and even flourish in this world, and believe me, the cuttlefish takes the cake. This fish (actually it’s a cephalopod) would be happy on the streets of Las Vegas… if Las Vegas streets were water… and if, under the water, the neon lights still worked. Cuttlefish actually look like a moving neon sign with flashing stripes kinda like the syncopated light bulbs that make arrows pointing at motels. Or, like zebras with stripes moving from their heads on back over their bodies and off their tails. These fish hypnotize crabs and zap them with their tongue-like tentacles.... very cool.
And, so it goes on a Tuesday night at the dialysis center.
Notes: In at 75.5 and out at 72.8 Kgs. Standing BP at the end was 116 / 66.
* Kings of Camouflage. Retrieved online April ’07 from the NOVA website, http://www.pbs.org/wgbh/nova/camo/change.html#ch03
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El Milagro: I had called earlier and talked to Phyllis the Nurse and arranged to come in at 1 pm. So, I arrive at 1:05 pm and they stop me at the door with "Hold on... we're not ready... they're just now pulling the needles on the person in your chair... it'll be a few minutes." So I turn around and retreat to the waiting room and sit and begin to watch Madagascar which is fairly watchable. There I sit for 45 minutes watching and waiting.
Finally get called in at almost 2 and get hooked up. My beginning BP is 108 over 59 and I'm feeling fine. I finish watching the movie and then flip over to the Master's to watch Tiger and company. Tiger isn't playing so hot, but always great to watch. By the time I'm done, I'm ready to get outa there cause with the 45 minute wait, my session is extended to 6 and a half hours.... way too long to spend in dialysis.
Afterwards we went out to eat with the relations at Romeo's and that was nice.
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Notes: In at 75.2 and out at 72.7 Kgs. Standing BP at the end was 102 / 57.
El Milagro: Today Diane checks my BP before sticking me and its 110 / 48! That is really weirdly low! It seems weird to the machine too, as it beeps and flashes a RED warning that the BP is too low. I sit down and the sitting BP goes up to 116 / 60 something. The techs ask me if I feel dizzy or faint and I don’t, so they “know nothing” (Like Sgt. Schultz** in Hogan’s Heroes) and just shrug their shoulders. So, what a way to start a session. Inside my head there are nameless worries running around screaming like unruly kids. Of course, these worries could be good for raising my BP. According to Medline Plus*, low BP is 90 / 60, so I guess that mine isn’t so bad after all.
I try to chill out by listening to All Things Considered and then snooze thru the News. I do wake up for Survivor, although it just doesn’t attract me like it used to. I am only fascinated by one character; Yao Man Chan***, a computer engineer from California. This 54 year old has a young heart, sharp intellect, and is able to think things through well and find creative solutions to get the job done. In tonight’s somewhat physical activity of using Fijian blowguns, spears, and bow and arrows to shoot at targets most of the participants just picked up the tools and used them without any forethought or consideration what-so-ever. Yao Man picked each implement up, studied it carefully, thought about the instrument and his physical stature and strength, and then used his analysis to combine tool and tact and he actually hit each target. With the arrows, he went through the pile and selected one that was the straightest. To me its neat to see this older guy outthink the young lugs in the pack of survivor wanna-be’s. Unlike earlier series where there have been several people to watch and cheer on, this one only has one person worth watching, from my humble perspective. So this is what I write about today… which suggests there ain’t much of interest going on here in dialy-land. Such is Life in Life-Alysis.
Later: Now when you click on the article on selling kidneys (see last post), there is a link to an article against that practice. The link is as follows:
Jha, V. & Chugh, K. S. (2006) The case against a regulated system of living kidney sales. Nature Clinical Practice Nephrology (2)9, 466-467, retrieved online April 2007 from
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Notes: In at 74.6 and out at 72.8 Kgs. Standing BP at the end was 132 / 69.
*“Low Blood Pressure” retrieved April 2007 online from the Medline Plus website: http://www.nlm.nih.gov/medlineplus/lowbloodpressure.html
** “Sergeant Schultz” retrieved April 2007 online from the Wikipedia website:
*** “Yao Man Chan” retrieved April 2007 online from Survivor website:
El Milagro: Today I get cannulated by Diane as Nicholas the Doc, Jennifer the Dietician, and Jo the Nurse are doing a quick rounds. I report to the Doc about my low BP recently and he asks a few questions and suggests I stay at my current dose of BP meds. Jennifer asks if I have been checking my BP at home and work and I excuse myself by saying I can’t find my BP monitor. I really must get to doing that.
It’s a pretty nothing session today. I listen to All Things Considered, watch the News, and through it all I am consumed with thinking about my request for colleagues to respond to the last post on purchasing kidneys. I think that paying for kidneys is a creative and interesting idea and know that my own need for a kidney probably muddies my objective thoughts about the ethics of such a policy. I hope my friends respond with their thoughts. My intent with this little project is to get a broad range of beliefs and thoughts on this issue and post them; partly to inform my own thoughts, and partly to add a considered set of ideas to the blogosphere.
Finally I drift off to sleep for a good portion of tonight’s session. So it goes.
Notes: In at 75.6 and out at 72.9 Kgs. Standing BP at the end was 108 / 65.
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El Milagro: Today I get here at 2:15 or so; late for my 2:00 pm chair time. Carol got me ready for sticking but Herman stuck me today, for some unknown reason. I told him that they were adding sodium and that I didn’t really understand it, and he said, “The only thing you have to remember is that sodium attracts fluid.” Further, he explained that when they add sodium to your blood the process of it attracting water pulls the fluid into the blood stream, which builds pressure, which raises your blood pressure. When people’s BP goes way low they can quickly raise it by adding sodium. This is the same logic behind limiting sodium when people have high blood pressure… because it attracts fluid which increase the pressure. Okay. Now I get it. In exchange, I told Herman about adding lots of sodium (salt) to a glass of ice water at restaurants, and then stirring it furiously to freeze the glass to the table so the waitress spills it when picking it up. He laughed and said he’d like to try that trick.
I was surfing through the channels and found a movie about 1965 high school seniors in turmoil (There Goes My Baby) with lots of great hot rods and music. This movie is a 3-year later version of American Graffiti and one of the subplots has to do with a girl trying to decide to go away to college or stay in LA. After that shot of nostalgia I surfed on into the home repair / cooking channels and settled on a show (Sell This House) about fixing up your house (house staging) to sell… pretty interesting quick fixes on a budget even I could agree with.
And then the news was on (ABC), and right towards the end there was a story that I got the staff to listen to. The head doc of the American Society of Transplant Surgeons* wants the country to start BUYING kidneys! That’s right folks! Step right up and sell your healthy kidney to one of the 70,000 people who need one. All we need to do is to legislate it, and then regulate it, and then make sure the insurance companies don’t make too much profit. And, more importantly, we have to ensure all healthy people are offered the same opportunity to sell a kidney, and that all are evaluated medically and psychologically in the same ways before being accepted into such a program. Creating this type of program would put the unethical kidney transplant industry in S.E. Asia and S. America out of business, I would think.
Oh? Am I for it? I would have to say, “Sure”, based on my sense of self-preservation. Ostensibly it would be easier for me to find someone willing to sell their kidney for $60 K than it has been finding someone to give me one of theirs out of altruism. I will have to consider for a time my thoughts on the ethics of such a practice. On the surface of my brain is this notion: as a believer in a woman’s right to abortion, I would have to say that it seems a similar idea that a person has a right to sell a part of their body if it suits them. With the state of the US economy right now, I’m sure there are a lot of people who would like 60 K to buy a house, pay off their debt, send a kid to college. Most of the ethical arguments against might come from the ruling class whose interests are social control, puritan values, and keeping the non-dominant culture in it's place. I'm looking for a comment from Hansie again, it seems. But also, dear readers, put in your 2 cents on this issue / question. Is it ethical to purchase kidneys for transplanting into the 70,000 people awaiting them rather than using our current system, which allows 6000 a year to die waiting for one? I am looking forward to your comments and thoughts on this.
Change Subject: And, last but not least, I must add that yesterday was Liz’s and my anniversary and we went to Jeffrey’s** to eat, which we do every year or so because it’s our favorite restaurant. Well, I had these crispy oysters on yucca root chips with habanero sauce that were to die for. They came on an elegant foot long by 4” wide white rectangular plate; all lined up like a string of Caribbean islands. Really. It was like flying over those islands that just pop straight up out of the sea. The chip had a fried oyster on it and the fried oyster had a bright lime green sauce with bits of pico de gallo sprinkled on top. The texture was crunchy, the taste was like a Havana + Juarez + San Antonio mix of spice and smooth enveloping a delicately fried oyster. Even this description doesn’t do it justice. But Liz agreed they looked like little islands on a sea of white porcelain. The whole evening was a wonderful anniversary celebration.
Notes: In at 74.2 and out at 72.7 Kgs. Standing BP at the end was 110/65.
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* McKenzie, J. People Can Sell Sperm; Why Not Kidneys? Retrieved online March 31st from http://abcnews.go.com/WNT/Health/story?id=2977619&page=1
** Jeffrey’s of Austin, retrieved online from http://www.jeffreysofaustin.com/