172) Not a Good Day at All

September 29, 2007

Morning: The Kick Kats (Shayna’s soccer team) lost to the Blue Crush this morning… Shayna playing with a sore ankle. We’re home now and the Kats are a little down… they don’t like losing any more than the parents. Actually, they won the first half and then the Crush got a few lucky breaks and that motivated them to just wipe us out, 5 to 1. Darn! Shayna played well for the most part; on defense the first half and forward and midfield for second half.

While the girls were warming up I read a Statesman article on Willie’s sister, Bobbie and her new CD, Audiobiography*. It amazes me that these two have been playing music together for 70 years now! That’s a long time!

El Milagro: Today I am able to come in for dialysis at 1. I weigh in at 74.0 kgs. And pass out flyers about the PAC meeting next Wednesday evening to the patients who are awake. Some of them have seen the flyer and some haven’t. Then I go to my chair and Carol the Tech cannulates me and tells me about her back pain: she thinks she has a squished cushion between her spinal discs and the vicodin doesn’t work anymore… that’s not good. I don’t really know what to say to her, so I make a grimace and nod my head in agreement and finally say something like its time to visit the doctor again if the medications aren’t helping. The pre-game show is already on the TV so I watch it and don’t really think about Shayna’s birthday party that I’m missing at the wall climbing and put putting place. Her girlfriends and her cousins are up there and I’ll see the giggly girl later at the slumber party.

So, anyway, I settle in to watching the pre-game and then the game itself while my blood is getting cleamed. Phyllis the Nurse listens to my vitals and later leaves. Jo the Nurse takes over for Phyllis and stops by to say “Hi”. Amanda the Tech and Jason the Tech are both here and say hello too. All is going well except that Kansas State scores first. But then UT scores and the game kinda goes back and forth for awhile. Then they score again and we go into half time at 14 to 7, if I remember correctly.

During the second half I have a little crisis, so its hard to remember exactly what was happening in the game. I started getting a foot cramp in my right foot so I slipped off my sandal and started massaging my foot. Within about five minutes my calf was cramping so I was trying to bend my foot up and down while massaging my foot and cursing to myself about having to focus on feet instead of foot(ball). Of course, I don’t want to complain, so I wiggle around massaging my thigh, bending my foot up and down, and rubbing the tendon on the bottom of my foot. Well, that works and I settle back into watching the game for a few minutes and then my left foot and leg start acting up. Damn! While my right foot I’m able to bend, the cramp in my left foot bends my toes down like a ballet stance and I can’t move them back up either by command or by trying to bend them with both my hands. And, of course, then the right foot goes haywire again… now I have both legs cramping and I am having a difficult time not wincing and complaining. Jo is walking by so I report that I’m beginning to cramp and she gives me some more liquid thru the tubes. And she sets my chair up so I can try to press my feet against the floor to lessen the cramping.

As I’m stuggling to stay still and not jump up, rip my tubes out, and run around the place like a maniac, I check my demeanor and wonder a lot of things all at once. Does she think it’s not so bad since I’m quiet? Is this too early in my session to make any sense? Did they just score again? I wish I could describe the pain, I think… “Its much like a cramping feeling… and you loose voluntary control of moving your legs or feet… and it kinda feels like someone has put a hot poker into your muscle and then twisting it like a cork-screw… getting tighter and tighter and more painful every minute until you want to scream.” I listen to myself and know that when I scream it’ll be a public sign that I am a wimp. So I keep trying to not show any outward sign of pain while I do want Jo to do something. She turns my dialysis off temporarily and I begin to feel better and then she turns it back on with the extra liquid and I seem to be better. But now I feel clammy with tingly lips and I know my BP is falling. The first time it is 80 over 65 and then it is 110 over 49… it is going nuts too. I’m feeling faint… so, I put my chair back in the reclining position, close my eyes and focus on continuing to wiggle my feet. I feel spent… its been about 10 minutes and I finally relax a little and fall asleep! During the clobbering UT is getting from KSU! I wake up again and it’s in the 4th quarter and the score is 41 to 21. What a terrible game. What a terrible time in dialysis. I watch the final minutes and Jason and I wonder if the team was worried about next week’s OU game. At least OU lost too today… to CSU. Doesn’t really make me feel better… I’m ready to go home and crawl into bed and not get up until tomorrow.

Oh Yeah. We have a slumber party tonight. So it goes.

Notes: In at 74.0 and out at 73.7 kgs.
* Audiobiography. Bobbie Nelson. Retrieved online September 2007 from AMG website, http://wm01.allmusic.com/cg/amg.dll?p=amg&sql=10:wifexzthldke
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171) Off the Wagon in Laredo

September 27, 2007

El Milagro:
Carol waits to poke me as Jennifer the Dietician smiles and Dr. Rowder mans his chart cart and asks the recurrent question; “How are you doing?” and today I have something to say back! I tell him I need a 3 month script for Requip cause it’s working fine for me after a month of trial. He agrees and whips that script right out. Jennifer the Dietician has some bad news: my phosphorous is UP again; this time its jumped from 5.1 to 7.3, she scowls. Actually she doesn't scowl... more like a frown... she is concerned and I am too. In my brain I say, "Let’s see… they took blood last Tuesday… what was going on on Sunday and Monday? Oh Yeah! I was in Laredo having Luis feed me luscious Sylvia Food on Sunday and then eating tamales and guaca-Mole on Monday". (Its Luis' fault!) I confess to the doc and Jennifer that I must’ve fallen off the wagon in Laredo… and we agree that I should just climb back on that renal diet wagon and move on into the future without looking back. Carol quickly cannulates me after the doc rolls around the corner and we talk briefly about the DC trip. All the staff around here are curious about the trip, the dialysis center, and if I think we did any good.

I start reading the New Yorker about a hospital closing and the ambulance paramedics telling their stories at the close-down party (9/17, Talk of the Town, 911 Dept: Last Call). Reminds me of the old days in El Paso, when I worked for Gold Cross Ambulance Company (you reading this Fred?) while going to college. The New Yorker reports crazy stories these paramedic guys tell are almost word-for-word our stories and it surprises me that the macabre world of ambulance people doesn’t change much over time and space. They have a sense of humor that only they and emergency room orderlies could love. In the New Yorker they tell of a guy who jumped off the building to kill himself and instead impaled himself on a railing two stories down. Darn! I remember the story of getting a call just as we were delivering a corpse to the morgue at the county hospital and rushing to unload the body so we could rush back out. Rushing through the emergency room waiting room, we turned a corner and got the wheels on the gurney all faced the same way and that sucker just fell right over on it's side. I quickly bent over to try to catch the sprawling body, and Fred theatrically turned to the gasping waiting room, threw up his hands, and said loudly, "Don’t worry folks! He’s already dead!” Ah yes… those dead body ambulance stories.

Herman is here this evening and he comes over to visit… he’s read the DC posts on this blog and asks if it was Kent Thiry (KT) I was referring to in Post # 166 at the end. I had called him an “ED” and Herman asked what that was, to which I replied, “an Executive Director”. Actually, KT is the CEO of Davita, not the ED. We compared notes on our impressions of KT and we agreed that he must be a passionate and sensitive guy… and that in the El Paso / Fabens / Clint area crying in front of an audience wouldn’t go over very well (KT has been known to cry when talking to large groups). And Herman was also curious about the meetings on the hill, etc. I asked Herman about my cautious feelings about the non-profit DPC being bankrolled by the for-profit company and he too thinks it is an okay thing because the work is in the interest of kidney patients all over the country; more humanitarian to lobby for kidney legislation than for oil rights, by Herman’s philosophy.

Later I watch the second episode of Survivor: China and find it to be very muddy with half naked bodies wrestling in the mud, trying to win immunity for their tribe. Great Stuff! I missed the first show while in DC, but I can catch up. Haven’t picked my favorite survivor yet but I am excited to be back into a schedule of watching Survivor at dialysis. Then, of course, its Gray’s Anatomy and I find that I’m not as drawn to this show as in past years…. tonight it just seems like too many things are happening at once to wrap my fuzzy brain around. I kinda watch and I kinda read the New Yorker jokes at the same time and I find myself lost because I missed some nuanced look between two of the characters that I no longer care about. Might be downhill from here.

So it goes with da TV shows.

Notes: In at 75.6 and out at 72.4 kgs.
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170) Shayna is Eleven Today!

September 25, 2007

El Milagro: Today I’m in the other corner. Gladys the Tech cannulates me. My BP is 151/81 and that is way too high! I immediately start to wonder-worry about that. Is it connected to something unsettling I see on TV? Am I totally stressed out? Am I about to blow a fuse? Doesn't seem so... but I do seem to be a little discombobulated today… I don’t have my book with me cause I left it in my overnight bag from a trip to Laredo. I don’t have my little radio because the batteries needed changing so I took it in the house…

By this time Gladys is finished and I say thanks and flip the channels. I don’t usually watch TV this early in my session… stop at a show about getting the most out of your small apartment space. I half watch, still thinking why my BP is so high. Next time the arm band puffs up it's down to 139/79, but I still don’t like it. I can’t stand this home TV channel, so I lay back and doze until the network news. Then I snooze until 7 and watch Ken Burns’ The War on PBS*.

While I’m here detoxifying and watching WAR, Liz and Shayna are out to dinner with Jen and David and one of Shayna’s friends at this new Italian place that Shayna has wanted to go for ages. We haven’t gone there yet because of my diet and the pain it would cause me to pass up lasagna or even any pasta with tomato sauce. I don’t think about them… I just suck my Jolly Ranchers and get sucked into Burns’ historic film… wonder if my dad is watching these episodes. All of a sudden it is time to get unhooked and shoot home. Gladys decannulates me and as I’m holding my gauze over my poke holes, I watch her busy herself around the place, cleaning up and getting everything ready for tomorrows early shift. Gladys is a really good worker and I think how I would like to have staff just like her if I had a business. My BP is back down to a fair number, although I am still worried about it.

Later @ Home: Shayna is all excited to open her presents since she had to wait for me by instruction of her mother. She dances through the celebration and is off to explore her gifts. After that excitement, I eat some leftovers and take my binders and my night meds.

When getting my night meds out, all of a sudden I understand my high BP. I didn’t take my meds this morning! So there you have it! Not taking BP meds in the morning has that kind of result by late afternoon. As always, I say to myself, “I must redouble my efforts and remembering my meds!” So it goes.

Notes: In at 75.6 and out at 72.2 kgs.
* Burns, Ken (2007) The War: A Ken Burns Film. Retrieved September 2007 from PBS online, http://www.pbs.org/thewar/
** It's also Mark Rothko's birthday today!
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169) Back Home Again

September 22, 2007

El Milagro: I get here on time* and they’ve given me my favorite chair in the corner. I have a warm feeling as I walk in nod “hello” to friendly faces and feel right at home here. Phyllis the Nurse comes up to check me and we talk about my DC trip as Carol the Tech cannulates me. I settle right in to watching college football on TV and am happy to be here.

OSU is playing against Texas Tech and I like OSU (they're cowboys) even though I went to Tech for a year way back in 1969, when dialysis was just beginning. So, what an exciting game! Both teams are scoring powerhouses and the lead goes back and forth until it’s 35 to 35. With only about two minutes left, OSU scored, making it 49 to 45 and even though Tech has a minute and 37 seconds left to take the lead, they can’t get it together to take the win (Sorry Michael). For football fans this is heaven: watching teams score 94 points, combine for 1,328 yards and 62 1st downs!

I switch channels and catch some of the first quarter of the UT game with Rice. It is already 7 ~ zip and I know its gonna be a blowout so rather than hang around dialysis for the whole game, I decide to go home. Amanda the Tech de-cannulates and tapes me and I give her positive verbal feedback to assure her she is learning well (as a new tech). As I drive home I am happy to be back in Austin… driving onward through the fog.

Notes: In at 74.6 and out at 72.4 kgs.
* "On time", after returning from Kol Halev services this morning. I missed most of the Yom Kippur prayers but got there just in time for Rabbi Baker's talk about materialism and our having so much 'stuff' and yet we don't come up with money to support causes we believe in. He told the story of a washer woman who never made much money but donated $100 K to a university in southern Mississippi and didn't want to have her name attached to the gift. It's all about being of service without doing it for need for recognition. That is the highest form of menschness.
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168) DC Dialysis @ K Street

September 20, 2007

K Street Dialysis:
Four of us DaVita Patient Citizens took a cab over here with our guide DeSwan and made our way through a maze of first floor construction and took an elevator up to the GWU-K Street Dialysis Center’s weighting room. We were met by Cora the Administrator and signed 6 or 7 forms ensuring that we give the place permission for anything that could possibly happen… and a guy across the room is curious about us… wondering if we are the people that are responsible for his confusing time changes. He volunteers to report to us all about his woes as we are signing our forms. He says he had to come here at 6 a.m. this morning and is still waiting! Soon the center social worker appears and ushers this guy off to discuss his situation further and I, for one, get the impression that he is clinically confused.

I am the first to finish the signatures because my signature is much like a doctor’s and because I don’t take the time to read any of the forms. I weigh in and am seated first. It’s funny to me about the signing forms ritual… if I don’t sign them I probably don’t get dialyzed or I slow the session time down to a crawl… so, I just sign my rights away every time in exchange for life giving dialysis. This is funny to me because it is, on paper, a serious thing, but in reality, it’s like unwrapping a piece of gum in order to chew it… or, like checking the wind when you’re peeing in the forest. If you don’t unwrap or check wind you’re gonna have a mess.

Archie the Tech hooks me up deftly and I investigate the place visually. Nurse Mary Ann comes by to check on me, but evidently they don’t listen to your back and chest or feel up your ankles here. She just asks how I’m doing and I say, “Fine. And by the way… thanks a whole lot for fitting us into your schedule. We appreciate it.” She smiles. This place is very hospital clinic like. Green new chairs that aren’t as comfortable as our old ones at home. The walls are all surgically clean and only have framed pastoral scenes or printed and laminated instructions about certain procedures. No hand written signs and no flimsy multi-colored tables and no children or friends of patients wandering about. No staff wearing every kind of outfit with several different kinds of white paper coats. All of them here have bought same-colored scrubs and wear the exact same white paper coats so they all look like scientists bustling around in a science fiction movie. And the dialysis machines look to me like Mercedes models… they have slope back screens that remind me of the hood of newer model Mercedes; or like some stern robots with a right arm made out of a series of translucent tubes that fall down the front, unlike our tubes that criss-cross every which way over the front of our machines. Very medical… with a sign out front that says NO EATING. My TV controller only goes up in channels so as I’m checking what’s on, I go past the live channels into fuzz-land and on… an on… and on. I inspect the changer and find no way out of my dilemma. I must go up through the channels to the end before starting again. There are three digits so I guess that I must go up to 100 before starting again. I do. It illuminates 101 and I quit. Now I could ask for help but these techs are very busy and I already feel like we are a burden to them, so I decide that my TV setting is not that big a deal. I turn it off and hook my earphones to my radio; tune to WAMU and take a nap. Later when I wake up, I pull out Venkatesh’s book and read for awhile, thinking about where in Washington could Venk’s descriptions be occurring.

I’m first off the machines too, and wait for my colleagues to come off, weigh out and notice that it is a new experience to be going to dialysis with buddies. I wait for us all to be ready to leave, like we are all a club or something. Oh yeah… we are a club. We find our way out thru the maze and hop a cab back to the hotel and have about 30 minutes to dress up for the big hoopla deal down in the ballroom. As usual, after dialysis, I’m ready for a little nap but I busy myself about the task of cleaning up and putting on my summer suit for the ball.

The DPC Gala: When I get there I notice that the men are dressed in a continuum of formality while it seems that all the women are wearing sparkly jackets over darker long skirts or dresses. A good jazz band is playing. The meal is excellent (Ruth Chris style steak with mashed potatoes for Kidney patients and some veggies) and the Award Ceremony highlight AKF who has collected and given more kidney-related dollars than I can even imagine. Another award goes to Ardell Lien who had a heart and kidney transplant and then sailed solo around the world. When he gets up to the podium, Ardell takes more than the few minutes of other recipients to tell his round the world story in glorious detail… which is a fascinating story, like a audio National Geographic special. Chad sits in the wings waiting for Ardell to finish, starting to get up a number of times… Ardell’s gonna tell his story and that’s that.

Finally the group gives an award to my fellow Austinite, Dr. Jack Moncrief, inventor of peritoneal dialysis. Dr. M. stands and astounds us with his stories about early dialysis… mixing dialysate in large vats with canoe paddles and pumping it through tubes with “finger pumps”. I have no idea what a finger pump is… Dr. M. shows us by holding up his hand and wiggling four fingers in a rhythmic beat. The amazing thing to me is he is talking about 1969! Before 1969 the state of the art in dialysis was pretty much if your kidneys stopped functioning… you croaked. 1969! So, Dr. Moncrief was really captivating to listen to. I introduced myself to him later and mentioned that Moritz is my nephrologist and he smiled when I described Moritz as a 'crazy guy'. As the band started back up I made my way around the hall saying “so long” to various folks and “thanks” to various people and headed up to my room early for some rest.

As I lay in my nice hotel room I thought back over the past few days and am happy I decided to come up here to participate. I met some wonderful people, had some interesting learning experiences, and may have spread the word on care for kidney patients a little. Again, it is all about being of service and when we act out of service to others then we ultimately serve ourselves as well. Thus endeth the DC advocacy trip. Nam-Myoho-Renge-Kyo.

Notes: In at 76.0 and out at 72.7 kgs.
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167) American Kidney Foundation & Vascular Access

September 20, 2007

Madison Hotel, DC:
Breakfast is French toast with some sort of flaky stuff stuck to it… and it tastes thickly okay. Mostly I like the link sausage and bacon and coffee. It seems very luxurious to walk into a dining room and get your coffee and take a sip of the hot liquid and then mosey on over to a hotel pan of hot sausage and bacon steaming a welcoming aroma at you. What a way to live. I wistfully wish I was barefoot on this maroon ornate rug with my plate of sausage and my steaming hot coffee… and, yes… the Washington Post. I’ve been reading this paper for a few days now and I like it better than the Statesman. Duh.

We DPC's say “Hi” to each other, share breakfast tidbits of information, and slowly drift into the meeting room. Today there are more educational lectures and then more hill visits for the people who were on dialysis yesterday. And there is dialysis for us who visited the hill yesterday.

We start with Phyllis describing the work of the American Kidney Foundation, an incredibly motivated and effective group that collects money for dialysis patients who are not covered by insurance or by Medicare. These people do exist and they get help from AKF (...watch for more info here about AKF from Phyllis’ talk)

Next a person whose voice sounded unnerving to me (in a shrill, birdlike way) talked about secondary hyperthyroidism and it was nearly impossible for me to get much out of it since I wouldn’t move away from my judgments about her voice. Her shtick was cutsey and had lots of laminated props for people to hold and use. However, she had an informative folder of information so all was not lost for me. I’m sure others in the group thought she was fine… I am just too old and grouchy and anti-cutesy I think.

After Ms Cutesy we got to hear Dr. Mahoney discuss vascular access and I learned some new things from this guy. He reminded us that catheters for access are EVIL; AV Grafts ain’t so hots (cause dey gots da clots)*; and, of course, AV Fistulas like mine are the state of the art. According to the doc, right now only 65% of dialysis patients have AV Fistulas and DC is dead last in the country for reasons that aren’t quite clear (to him). To keep watch over your AV Fistula, Mahoney suggests:

  1. Protect your fistula arm.
  2. Never allow a PICC line placed in your fistula.
  3. If you need a PICC line ask for a “right side central access line” which goes in the jugular vein.
  4. Get familiar with your venous pressure; it should be ½ the blood flow rate.
  5. Long bleeding after dialysis usually means problems with the fistula (blood flows where there is least resistance and when that means out the stick hole, there’s blocking somewhere).
  6. Seek a fistula evaluation when there is prolonged bleeding, worse Kt/V, lower blood flow rate for a period of time, hard cannulations, swelling of the fistula, or a strong pulse in the fistula.
  7. The easiest and safest way to clean out a blocked fistula is with an angioplasty (in and out in one day).
  8. When you hold your arm straight up, the fistula should drain and deflate (shows easy blood flow back into body).**

What great information, huh? Afterwards, Mahoney checked out a number of our fistulas and said mine was “okey dokey”.

* Mahoney on AV Grafts: Watch your BP. If it goes below 80 that’ll lead to clotting.

** Mahoney, D. Vascular Access. Lecture presented at the DaVita Patient Citizens Capitol Hill Advocacy Day Meeting. Washington, DC.


166) Advocating for KCQEA

September 19, 2007

Madison Hotel, DC:
So I was smart to get up really early this morning to shower and make it down to breakfast at 7… well, actually 7:15… and I didn’t wear my sport coat cause I had to have the tie and I thought a little bit at a time… I’d come back up to my room, etc. So, I get in line for breakfast: scrambled eggs (no picante sauce at this DC hotel), bacon, sausage, and an English muffin. Sit down at Elizabeth’s table and she announces “You’re with me today!” and I get coffee and begin eating… and before I know it it's time for advocacy training from a very
sharp person named Billy who trains us on the political landscape; brief review of the legislative process; review of the Kidney Care Quality Education Act of 2007 (KCQEA)*; winning strategies for having an impact on 'the hill'; tips for lobbying; and developing our "elevator" speech. Billy says an elevator speech is 'our personal story' distilled into less than 2 minutes, because when we meet with members or aides we can never be sure we'll have more than a few minutes to influence them. So, we want to thank them for seeing us, tell our story, share info about the KCQEA and make 'the ask' (ask them to either sign on as a sponsor, or if they already have, ask them to tell their friends to sign on). At the end of the didactic part, Billy has us practice in threes and then has a group come up and role play a meeting in front of the whole group.

After Billy, we hear Chad the ED of DPC (Davita Patient Citizens the 501 C 4) talk more in detail about the KCQEA legislation details and the CHAMP Medicare re-authorization bill that bundles payments for dialysis and cuts epogen use by 4% across the board and cuts 3.5 billion dollar from the portion reserved for dialysis patients. According to Chad, 300,000 people across the nation are on dialysis currently, and that is too big a group to suffer these cuts. Therefore we need education and prevention and payment reform <-- our message. Time for lunch! What a morning session!

I decide the pile on the salad and blue cheese dressing for lunch... well, and have a little roast beef with mustard/horsey sauce and mayo and onions and lettuce sandwich. Yum yum. Just like home. I'm chomping and Elizabeth comes up and warns, We have to catch a cab in 10 minutes”. Well, I eat even faster and she goes to her room to get a camera and says on her way out, “meet me in the lobby in five…” and I eat faster. I rush out as Erich from E. Lansing, Michigan says, “good luck on the hill!” and I mumble something in reply… rush up to my room to get my folder and then down to the lobby. Oh. I did take my binders, BTW.

On the Hill: We catch a cab and it is just me and Elizabeth. Our third member didn’t show up for the event so I all of a sudden realize that she is the guide and I am the guinea pig... I mean, the live patient on dialysis... the person from Texas here to “tell my story” to the seven Texas members we have on our list. ME! "Good time to figure out what my story is" I tell myself. This is rolling around in my head as we slide into the back seat of the cab and roar off into the streets of DC, on our way to Sam Rayburn’s Building. My story is one with the following points that I am supposed to be able to tell in a minute or so, and then execute “The Ask”. My story is of a
50 year old who finds out they have the dreaded end stage kidney disease and ends up on dialysis, which changes my whole life, but isn’t nearly as bad as others who have to rely on Medicare to keep themselves alive. ‘The Ask’, for me, “Will you sign on to co-sponsor (support) the KCQEA?” And, “What do you think of the CHAMP Legislation?... cause we don’t like parts of it…” Intermingled with my story we interject Elizabeth’s story of finding out she has a kidney condition that I never heard of and how she has kept herself off dialysis through conscientious diet and education about kidney care. If they have signed on to co-sponsor the KCQEA, we thank them and still ask their thoughts about the CHAMP bill and it’s latest version that cuts 3.5 billion from ESRD dialysis patients. Do they favor that?

There is a statue of ‘Mr. Sam’ in the oval corner of his building, standing there very white in the chalk-like material it it made from. I wonder if it is plaster or marble but we don’t pass close enough to it for me to touch. Sam Rayburn**, speaker of the House in the good old Democrat days ~ serving as Speaker of the House from 1940 to 1961.

In Sam’s building we visit with Representative Joe Barton’s young Legislative Correspondent, Michael Seeds. Michael is our first ‘customer’ and we do a fairly good job of sharing the stories and the information giving and the asking for support. We move on to meet with Kyle Oliver, the Legislative Director of House Rep Ralph Hall, from North Texas. Although Rep Hall is from Rockwall, Kyle is from Austin and we strike up a conversation about ACL Festival and I decide to make an impression (Our trainer Billy Kreisberg taught us that some part of our story will stick with the person… and my experience is that when folks feel my trill of the fistula… THAT sticks! So, I stick out my hand and ask Kyle to touch it. Like all touchers of fistulas, he jumps and exclaims, “Wow!” and then I get to explain it to him. Hopefully it is an an
chor of this meeting. Elizabeth and I more smoothly integrate our stories with our info sharing and we walk outa this Rep’s office high fiving. We got it down.

We catch a cab to another office building, meet with another rep and a senator and get sort of cool receptions and then are off to another building where we have almost an hour’s wait. Elizabeth write her notes on the meetings and I read the Washington Post and review my notes for the next meeting. I still want someone to fall down on the floor over our plight.

So, we go to Kevin Brady’s office and we think we’re gonna meet with the Representative himself… and, we’re not… cause he is off voting for something. So, we meet with Chris, the rep’s legislative assistant and we’re slow on the uptake but he seems real interested and the rep has already signed on to support the KCQEA so we thank him and begin some less than excited conversation. Well, then, all of a sudden the rep comes in, takes
off his jacket, apologizes for being late, and wants to actually talk to us! He knows the legislation, talks about his support, is willing to discuss his difficulties with CHAMP, and asks us what we think about the whole thing. He is personable and I think, “Of course this guy could get elected, he is very nice, friendly, genuine, and I would follow him…” Oh… and BTW: he happens to be the Republican House member from Conroe. I share doing work with MCYS over there and we both applaud their long history of good services to the area. He is easy to be informal with and we get our picture taken with him. He feels my fistula and I think it is a good visit.

We move on to two Democrats; Henry Gonzalez from SA and last, but not least, Lloyd Doggett’s office. At Gonzalez’ office we see the Representative walking between rooms and he is warm and welcoming and feel immediately at home in this basically all Hispanic office. We talk to Leo from Houston who loves Austin and is very interested in how the 3.5 billion got dropped from the CHAMP. He will look into that because he knows how dialysis treatments losing money hurts the Rep’s constituents. We feel good about this meeting and I was happy to see the Rep again. At Lloyd’s office the receptionist is from Austin and she and I talk… all I remember is her saying how difficult it is to find a place here in DC to sit by a creek of cold water in a bikini and read a book. She is bubbly and later I find out her name is Katie. We meet with Jackie, Doggett’s assistant, who knows exactly why he hasn’t signed on to support the bill and she mentions that they are concerned that they only sign on to legislation that they can unquestionably support, not just to be on the band wagon. I’m impressed with her honesty. She does ask a number of questions about my experience of dialysis after I make her touch my fistula. She was squeamish but she stepped out of her comfort zone with a little bit of coaxing… and she then opened up more and asked about the EPO issues that were on her mind. We did our best at sharing DaVita’s procedures for dispensing epogen (the acceptable rates at which it is given) and Jackie showed her knowledge of the issue with an accurate reply about the hemo numbers in healthy people. Elizabeth did a good job of discussing this issue, thankfully, cause all I really know is what I’ve read and my own observations of my situation. We ended up talking to Jackie for a good 40 minutes, so I am thinking she was interested in what we had to say, and in the fact that I write Lloyd all the time.

We walked outa there feeling spent but happy with our day’s work…. Caught a cab back to the hotel and I hit the snack room before coming upstairs to check email. All in all I felt very good about working with Elizabeth. From our between-meeting conversations I gleaned that she is an ethical social worker who has a Speedy Gonzalez voice and a passion for working with kidney patients. She has been involved with a number of DaVita projects that are client-centered and positive.

Later: At the dinner tonight the ED and founder of DaVita came with a message for us from the corporate sponsor of this whole thing… that he applauds us as the unsung heroes of dialysis (without his Muskateer outfit). He seems to be quite charismatic and his spiel reminded me of an Insight Transformational Seminar facilitator's. This is not a bad thing. It is simply a description of a person filled with an effervescence and passion that borders on manic. His message was about DaVita's developing the best dialysis program the world has ever seen. I wanted to ask about why he didn’t make DaVita a non-profit, since he stated that one of his dreams was to do work in the non-profit sector when he was drawn back to creating DaVita…. and, clearly I didn’t want to know enough to actually ask the question.

After dinner I talked to Jack from Iowa, who has been on dialysis for 32 years now… and that was inspiring. In fact, I got so immersed in talking to Jack that I was late meeting Robert (TNOYS’ Youth Staff Member) in the lobby. Luckily, Robert waited for me and we had a nice meeting in the bar sharing our day, our highlights of the last few weeks and our thoughts about DC. And of course, since DC is really (for me and Robert) a suburb of Austin, he is in class with Katie, the bubbly woman from Doggett’s office. I told Robert I thought she would remember me, since she waved at me when she walked out. I remember her…. she should remember me. Robert will find out!

So there it is.

So it goes. And... Onward thru the fog……… in DC.

* KCQEA (Description and background) retrieved online October 2007 from the Kidney Care Partners website, http://www.kidneycarepartners.org/kcp_act.html
**Sam Rayburn retrieved September 2007 from the Famous Texans website, online at

165) Travel to DC

September 18

El Milagro: Well, its been a long time since I came in here at 5:30 in the morning, and I recall why I haven't... this is really EARLY! I am not yet awake and every thing people ask me is responded to with a vacant look. Jackie is bright and bubbly as she pokes me. I just want to lie down and go back to sleep. I do. And then I wake up and listen to NPR for awhile.

So, of course, since I am here and then must shoot out to the airport to fly to DC, I begin to feel funny and ignore it for some time. And then I try to ignore it and finally I end up calling Phyllis the Nurse over and tell her I'm feeling a little faint and clammy. She checks my BP and says, "no wonder... your BP is 70 over 90". So, they shut down the machine and let me build up my BP to where I can walk out of the place.

I sit there holding my arm as long as I can stand it, then tape myself up and zoom out to the airport to check in and get on the Time and get bored.... boy it takes a long time to fly to DC... not like jetting from Austin to Dallas. I arrive at Dulles and am happy I pre-arranged my SuperShuttle... all I have to do is check in and wait about 10 minutes for them to drive me the 40 minutes to the Madison Hotel downtown. I'm Here!

I check in and get a non-smoking room that smells like stale cigarettes and has an ashtry right on the bed table, where one can easily burn the place down while falling asleep. I call and they send someone to meet me on the 6th floor with a key to a new room. Its funny that the non-smoking room with the smoke and ashtray has a new fangled thin TV and fancy dan radio and my new non-smoking room has no ashtray and an old thick TV and old radio. I guess smokers get upgraded supplies here, since they're gonna hafta die earlier.

I must decompress... turn on NPR and sit still for awhile trying to decide what costume to wear to the first DaVita Patient Citizens Meeting. I decide to wear exactly what I'm wearing... whew... what difficult decisions we have to make in DC. I go down to the designated meeting place and there are already about 20 people there. I look around and a woman smiles at me and I walk past her table and then turn around and go back to sit beside her, thinking that smile was friendly and I don't need to find any better table to sit at. She is Elizabeth and she's on the Board. I also meet lots of kidney dialysisers and more staff of this non-profit supported by the for profit that is DaVita. Curious still I am all eyes and ears and soak up as much information as possible. Chad is the leader and he has worked on Kerry's campaign and I hallucinate he is a little pushy, but it may be that he is just a "DC" guy. Tonya seems more approachable and the board members of this group seem to be very nice.

There is food for dinner, a short presentation and we all introduce ourselves. We are from different states and from different SES and flavors of kidney disease and dialysis. All flavors are represented and lots of the folks are around my age, so I slip right in.

So, for the next few days I hope to post every day since this is dialysis + kidney adovcacy a-la-modes ville.

Notes: In at 75.0 Kgs and out at 72.5 Kgs.


164) PKD Walk Day

September 15, 2007

We started early today. Shayna and Liz went to Shayna’s first soccer game of the new season and the Kick Kats won, 8 to 1! Shayna played defense. I left the house early to get some money, buy gas, and buy some bottled water, ice, and Danishes for my Kidney Walk Team, The Austin Folkies. When I got to the walk, the parking situation was not conducive to my snacks and water and the walk had all sorts of water plus a full meal after the walk. Oh well… best laid plans, etc. etc.

El Milagro: Zip zap and here I am sitting in my dialysis chair at 1:15, only 15 minutes late after all the rigamarole. “Whew!” I’m tired and full of food and ready for a nap before the UT / CFU game starts in an hour.

PKD Walk Reflections: This mornings Walk for PKD was more impressive and organized than last year’s walk. This year the walk was located in the neat 2nd floor gym of the First Methodist Church, across from the Capitol, with big arched windows like we used to see on Ironside*. I parked the truck and crossed the street to the church’s community center and found my way to the upstairs gym that was set up with tables filled with turquoise t-shirted folks readying for the walk. I found my friend Ananda and we finally figured out that our Austin Folkies Team had a table and right at that time Shayna and Liz walked in. Soon it was time to walk the walk, so we walked out and found Kim, Michael, and David carrying little Emma and pulled them into our group and proceeded up to the Capitol steps, where there was a short speech and introductions of the teams, etc. The march went all around the Capitol and somewhere along the route, Wendy and Boo joined our group and we posed for a picture (taken by Lizzie) along the way. Of course, Shayna ran the route and came back and found us and wetly reported that she was first to complete the course! Back at the center, our team briefly came upstairs to see the setup and then left for their Saturday chores.

We stayed and heard State Rep Donna Howard** address the group and talk about how we can influence our representatives towards the needs of PKD people, mentioning that she didn’t know for many years that PKD affects more people than Muscular Dystrophy, Cystic Fibrosis, Sickle Cell Anemia, Down Syndrome, and Huntington’s Disease COMBINED, and yet PKD gets less funding support than all but one of the others. She impresses me. Jennifer Lawton, from Doggett’s office spoke in place of Lloyd, since his mother just passed away. Lloyd was honored for being instrumental in the House passing the Genetic Information Non-discrimination Act*** that is now languishing in the Senate. All the participants were asked to write their senators to support this legislation. There were awards after the speeches, and I got 5th place for amount collected… and was awarded a new trash compactor! And to finish off the event, there was lots of really tasty barbeque ribs and sausage and lots of side dishes. I ate and zipped off to make it to dialyis. The Austin Walk made $25,752, 10 K more than last year. The Austin Folkies made $1900 so I am just delighted about that. Thank you again to all of you who donated money to this worthy group.

I snooze and wake up to the start of the Texas game. What an anxiety provoking game! Our great Texas team almost goes down the toilet to a central florida team no one’s ever heard of! We struggle through the first half and finally put together a game in the middle of the second half, thankfully. Amanda Ambrosia the Tech comes to de-cannulate me amidst the anguishing game and I lose track of it momentarily to observe her skills. She is the new tech that showed up a couple of months ago, has been in training, and is now allowed to actually touch people. She is somewhat nervous and I help her untangle the tubes from my BP monitor and earphones. She does a good job pulling the needles and taping me up and I tell her so. I weigh out and stand in the weighting room watching the end of the game. Amid crying fans and surprised players, the Longhorns leave the new field with a lousy 3 point victory against a team they’re supposed to beat by 19. I’m glad it’s over. On the way home I predict Kurt Bohls will compare today’s team to “ordinary leftover meatloaf” in his column. Asi es la vida!

Notes: In at 73.9 and out at 72.5 kgs.
* Ironside (TV series) retrieved online September 2007 from Wikipedia at
** Texas Representative Donna Howard online at http://www.house.state.tx.us/members/dist48/howard.htm
*** The Genetic Information Nondiscrimination Act of 2007 retrieved online Sept 2007 from the National Human Genome Research Institute at http://www.genome.gov/24519851#4

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163) Rosh Hashanah

September 13, 2007

El Milagro: I got here a little late today, having rushed from Cari and Stuart’s luncheon to the house to change out of my suit before coming to dialysis. I would feel funny walking into dialysis in a suit. The highlight of the meal this year, aside from seeing our KFF friends, was Cari’s sauce for the salmon. We’ll call it Cari’s Salmon Sauce:
2 Tbs soy sauce + 2 Tbs honey + 2 Tbs lime juice + 2 Tbs Dijon mustard. Whisk together and add 1 Tbs H2O and whisk again. This sauce has a nice bite and goes great with salmon… probably with other fish tambien.

When I arrived here I put my stuff on my chair and quickly made the rounds with a stack of September newsletters, introducing myself, explaining the PAC and my representing our shift, and asking folks to write things for the newsletter if they wanted. This idea of PAC members handing out the newsletter was a GREAT idea because it necessitates that the members get out and talk to their shift-mates. So, I met each person on my shift and tried to use their name in talking to them. Now, thirty minutes later, I remember about 30% of their names. Damn! I always forget to use the strategy I learned in NLP: repeat the name audibly while ghost-writing it on your leg and simultaneously picturing it in neon on their forehead. At any rate, one person gave me a ‘complaint’ to take to the committee (no soap in bathroom) and one asked for my email address to send me stuff for the newsletter.

Before dialysis we went to Rosh Hashanah services this morning. Shayna now has to go to services instead of the kids’ activities since she is a pre-bat mitzvah. She and Maya Papaya did very good at sitting through the 3-hour service, only taking a few ‘breaks’. Rabbi Kerry talked today about marriage and messing around in the modern world: breaking commandments and media seductions. Afterwards, when we asked her what she thought about the service and what it meant, Shayna summed it up by saying, “No one is perfect.” Ah yes, no one is perfect and we celebrate Rosh Hashanah by saying “Happy New Year” and we begin to consider all the ‘not perfect’ things we’ve done in the past year in order to prepare to set our plans for a better new year. For more information about Rosh Hashanah see this blog, September 2006, # 58. For a beautiful reflection of Rosh Hashanah go to Barbara Mahany's website, pull up a chair* and click on daily_meanderings and then type "in awe" in her search box to read her musings on Rosh Hashanah.

On the news I hear that the Austin City Limits (ACL) Music Festival this weekend will bring 27 to 30 million dollars into our fair city. WOW!

So it goes on this new years' day… welcome 5726.

Notes: In at 74.9 and out at 72.1 kgs.
*Mahaney, B. (2007) in awe. Retrieved online September 13th from pull up a chair: daily meanderings http://www.pullupachair.org/
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162) Our Pain is The Pain

September 11, 2007

El Milagro:
It’s the 6th anniversary of 9/11 and I’m here in my chair, hooked up, and listening to NPR All Things Considered in my earphones. Gladys hooked me up and took about 6 test tubes of blood for my various blood work tests. There are a number of stories about 9/11 and they conclude with “In all, 2,974 victims were killed by the Sept. 11 attacks: 2,750 connected to the World Trade Center, 40 in Pennsylvania and 184 at the Pentagon.” 9/11 is one of those dates that will live on in infamy, like Pearl Harbor. We find ourselves saying things like, “I remember what I was doing when I heard the reports” or, “I was watching ___ when they broke into my TV show.” On that day I was waiting for Kim to pick me up and take us to Lake Travis to facilitate an all-day teambuilding retreat for the staff of LifeWorks. We went out and pulled the group together and shared with them what we knew about the attacks (since they were without media at the lake) and then cancelled the rest of the day, joining with their bosses to say, “Go home and be with your families”. Seems like a long time ago now.

Sherri the Social Worker pops in and out of my 9/11 musings to get information on my DC trip so she can arrange for my dialysis up there. Setting up out-of-town dialysis is reminiscent of being in the military and transferring to a new base (I hallucinate). Around here they call today Patriot Day and they have a big American flag hanging from the ceiling and little American flags taped to many of the dialysis machines. Ron the Nurse cheerily comes around passing out sandwich bags of popcorn and strawberry or grape juice boxes. As I watch him I notice that most patients are delighted to get these little “perks” and that revs up Ron’s animation.

During the past week I’ve been out in cyber-space exploring other PKD people’s blogs, since we are all listed on the PKD website. As I surf around checking out people’s blogs, I notice that some of them report the pain and suffering related to our condition: how PKD leaps into our lives unexpectedly and then totally overwhelms us and scares us. My own surprise at finding myself with PKD is ancient history now, it seems; and I can hardly remember the shock Lizzie and I had when Dr. Moritz was explaining, “You got a tiger by the tail, boy!”. So, tonight I’m considering the more ominous aspects related to having a chronic condition like PKD. My worry, when I allow it to surface in my brain, is that we never really know what is happening. In a world where knowledge is power, we can never have enough knowledge to set aside our worries about our condition. Since finding out I have PKD ten years ago, there have been numerous times that I have had aches, pains, symptoms, and manifestations that I have to connect to the condition, but who knows if they really are. As with any kidney condition the connection to blood pressure, thyroid, digestion, and basically all other mechanisms of the human body necessitate concern whenever anything feels funny or seems to be going wrong.

And boy, I can create maladies to worry about! In the area of hallucinating that a twitch or ache in my body is a sign of impending doom, I am very creative. The problem is that there isn’t enough knowledge to allay my worries: there is only enough knowledge to amplify my doomsday despair.

Notice: Gross Bodily Function Descriptions Ahead ~ For example, a few nights ago I awoke at 1:30 am with a need to poop. Alright; that happens when one is on binders. As you might suspect them binder
s bind with phosphorous and usher it right down through the system and out the pooper (and we take them binders at EVERY meal). So, I poop a very loose, runny poop and then start worrying about that. Then I notice I have an uneasy stomach. I immediately put myself to the task of figuring out what is the matter, interrogating myself with my harsh parent voice a “Did I ingest too much potassium or phosphorous? Why is my poop so runny? Were my binders sitting next to my stomach wall? Did I take the binders too late after eating? Am I becoming too anxious? Ugh, I feel sick. I should go back to bed and lie real still and put this crap outa my mind…”

So, I lie back down and doze for about an hour according to the luminous clock radio. Then I wake up and have a need to rush back into the bathroom to poop some more. Same story; same ruminations and my stomach feels even worse. I go downstairs and throw up in the downstairs toilet (so Liz doesn’t hear me heaving). It is horrible and tastes like metallic sour bile. "Yuk!" A
nd my self talk continues: “What is going on? Is this because of those two chiles I put on my chicken last night? Do I have a bug? Am I worrying myself sick? Is this some sort of sign the dialysis isn’t working right?" I heave a few more times until I can tell there is nothing else down there to come up. And I wash my mouth out in the kitchen sink and drink a few gulps of lemon lime soda to further wash away the taste. I sit on the sofa for a few minutes, looking around the quiet light of the night time in my living room. The moonlight comes in through the back windows and everything seems still and comfy and I begin to breathe more peacefully. Back to bed again. I wake up again and hit the toilet a few more times that night; at 4:30 and about 6. And then I wake up finally at 7:15 and actually feel okay and ready for a new day.

So, the point of this self diatribe is that when we worry about our disease and the various concomitant physical afflictions, we can slip into despair or we can see our worry as keeping close watch on the challenge. Don Juan used to say, "only as a spiritual warrior can one withstand the path of knowledge. A warrior cannot complain or regret anything." When situations like the above happen, we are many times are afraid to ask the doctor about them or embarrassed. And usually, in my case, I think it is something I did wrong or it’s my fault I feel such-and-such. So I am hesitant to talk to anyone about it, since I am sure they’ll take pity on me or say they don’t know what it means (have no answers doctor), or worse yet, try to further constrict my life or give me more drugs. So, even though there are these physical things going on once in awhile, we must take them as our challenge to survive and learn from; and we can hope to move on to a more comfortable place real soon.

My recommendation for my brothers and sisters who are in the PKD boat or the dialysis boat is “...live your life fully! Accept the pain and fear and worry because it too is part of living. Without feeli
ng the pain you cannot really appreciate the joy of living.” Remember what Jack Kornfield says, "The great forces of ...fear and ignorance that we encounter can be met by the equally great courage of our heart. Such strength of heart comes from knowing that the pain that we each must bear is part of the greater pain shared by all that lives. It is not just 'our' pain but the pain, and realizing this awakens our universal compassion."*


Notes: In at 76.9 and out at 72.5 kgs.
* Kornfield, J. (1993) A path with heart: A guide through the perils and promises of spiritual life. New York: Bantam Books, p. 74
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161) The Meaning of Your Communication is the Response You Get

September 8, 2007

El Milagro: I’m here early today, arriving at 11 and I notice Ron the Nurse in a new light, since he is now the Clinical Director. He was promoted to take Herman’s job when Herman moved to the new S. Austin facility as administrator. Ron seems more attentive to everything that is going on right now… he is in the beginning of his learning curve and hyer-attentive, as he should be. Right now he is talking to one of the older men who always wears burnt orange on UT game days… so I hallucinate the old guy is either a long-ago graduate, or someone that worked at UT. He’s wearing his burnt orange polo shirt today, as I am wearing a burnt orange t-shirt.

Carrie the Tech comes over to stick me and asks my weight. My thoughts of Ron’s new position have erased my short-term memory and I look over at her and say, "Uhhhh; I can’t remember. Sorry.” James the Nurse has just strolled up and he offers to go get my weight from the weighting room. I mumble, “maybe it was 73.9…” and my voice drifts off as I stare back at Carrie, who has sharp eyes and a determined scowl. James returns to break my stare and reports, “He was 73.9” and I nod my head approvingly. Carrie jumps ahead to the business at hand: “So, how much you wanna take off?” I’m not used to them leaving it up to me so completely so I sheepishly say, “Umm… well, my dry weight is usually about 72.0, so…” and she quipped, “So, how much?” with a stare that seems to be getting more icy… “I can’t set it until you tell me.

“Okay. How about 72?” I offer, and James interjects, “Take off 2”, and she goes about her task of setting the machine. When she is done and is done cannulating me she decides to make conversation. “So, where do you live?” she asks. I tell her immediately, comparing her in my mind to Nurse Rached*, and hoping she just walks away and leaves me alone.

I must admit here that I know it takes two to create an image of aversion (that I now have ringing in my brain) and I know I’m stretching it to compare little Carrie to Nurse Rached. It just popped into my head that way so I purged myself of it here. And I do know that I can either add to the aversion or shrink the aversion by my response to it, so how I respond to Carrie actually (probably) fed her squinty eyes and stern nature. In NLP we used to say, “The meaning of your communication is the response you get”. This presupposes that communication and thus relationships are built upon two inputs, not just the “other”. Therefore, we can think of resistance as a constructed action based on both parties input. Either party in a conversation can create resistance in the other by not listening to the other or by simply presenting information that is not agreeable to the other. At any point either party can also decrease resistance by inputting information that is agreeable to the other, or by earnestly asking for the other’s opinions or ideas. When I am teaching counselors, I remind them of Steve de Shazer’s views of resistance: it is created when the counselor attempts to convince a client who is in "denial" (lack of agreement about the "problem") that a problem exists and that the client needs to do something about it. When clients are viewed as having "multiple goals", rather than as "resistant", the counselor has more options for responding to them in useful ways. The key is "to cooperate with the client in respect to each of the client's goals"**. And BTW: later James tells me Carrie’s not so bad.

So, back to football: today I am watching OU whip U of Miami and I’m thinking that even though OU is our big rival, I would still rather see a Big 12 team beat any Atlantic Coast Conference team. And OU is VERY impressive. I am afraid of what they will be like against us on OU Weekend. Yikes!

About 30 minutes before I’m done, and now watching Michigan fall to the Oregon Ducks, there is commotion over to the left of me a number of chairs; and when a commercial comes on, I check with my football-watching neighbor (the one who always wears shorts and boating shoes with ankle socks) about what it’s all about. He reports that this son came in to pick his mother up and noticed she has a badly hanging toenail. He asks Ron to cut it off and Ron explains the rules about toenail cutting (“no way Jose”) and about liability issues, etc. and the guy gets real mad and asks if the center can give him a knife so he can do it himself. I’m getting sorry I missed this drama. After the guy leaves with his mother in her wheelchair, the staff is chuckling about his request and wondering if he’ll take her to an emergency clinic or just home to his garage; sticking her foot in a vise and ripping the toenail off with some pliers.

And, what a Saturday! There’s one more event to report. Just at the end, while Carol was getting ready to de-cannulate me, she gets busied up down the line and then they pull out the medical screen and Ron goes back there to service someone who was just brought in by the transport service. Carol comes back and she sheepishly says, “Sorry. Someone’s colostomy bag just broke.”, with a frown. “Ycch” I say, “Don’t tell me more”. I can tell Carol is just happy that Ron is handling it… so to speak. Carol un-hooks me, (as I hallucinate poopy smells wafting around) bandages me up, and I’m on my way. I’m thankful that I’m one of the healthiest dialysis folks on the block. Yippee! I dance right outa there and drive fast all the way home.

Notes: In at 73.9 and out at 72.5 kgs.
* Green, M.E. (nd) Louise Fletcher in One Flew Over the Cuckoo’s Nest. Retreived online September 2007 from The Little Review’s website: http://www.littlereview.com/goddesslouise/movies/cuckoo.htm
** Tohn, S.L. & Oshlag, J.A. (1996) Solution-focused therapy with mandated clients: Cooperating with the uncooperative. In Miller, S., Hubble, M. & Duncan, B. Handbook of solution-focused brief therapy. San Francisco, Ca: Jossey-Bass Publishers, p. 154
New Readers: For A Welcome Post, click August 2006 on the Sidebar
The Austin Folkies Team Report: We're up to around $1000 dollars of donations for the PKD Walk! WOW! I am amazed at the generosity of my family & friends!


160: The Blogger

<-- This is the way it feels to me many times as I begin to write in my blog. Do I write 'in' my blog or 'on' my blog; that is the question. Does my writing a blog mean I exist in a broader universe than that of my dialysis center or my breakfast nook? If my blog is published does anyone hear it? What is the sound of one blog clapping? I think sometimes that I do this just for digital exercise and to see how fast I can type. And, I do like reading what I say... even though it is "nothing" of consequence to most people. Ah yes; these existential meanderings add purpose to an otherwise boring existence in a meaningless world. <-- I don't really think that... just sounds cool to say it. And so it goes.


159) Another Tuesday

Sept. 4, 2007

El Milagro:
Got here on time today and am getting hooked up by Gladys the Tech, who is friendly and competent and has long thin fingers with scrubbed red knuckles. She efficiently pokes and attaches me and is off to hook up the next person.

Today I weighed in at 76.7 and I wonder if that’s the highest I’ve ever weighed in at… the result of stuffing myself with wicked chiles over the weekend at our annual chile fest. I doubled up on binders and tried to keep a somewhat kidney-friendly diet while enjoying the feast.

Today I’m concentrating on finishing reviewing an article on teaching social and emotional competence for the journal I review for… and I know already I’m not going to approve the article so it’s a little boring finishing reading it. Whenever I realize an article doesn’t really cut the mustard for publication, I am no longer interested in reviewing it… even though I know that the authors get something from our comments on how they can improve the work. So, I put it down and shift my chair into “doze” and lay back listening to All Things Considered.

Before I know it its 8 o’clock and Gladys is back to unhook me and send me home.

Notes: In at 76.7 and out at 72.6 kgs.
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158) Hamburger ala Dialysis con Binders

September 1, 2007

El Milagro: Today is the day that the Patient Advisory Committee (PAC) came to feed the center. This plan was made at the last PAC meeting, which I missed through forgetfulness. From my perspective as the PAC member who wasn’t there, it was a less-than well organized activity, and yet it is happening out there in front of the center as I write this. So, who am I to complain? Ms Chavez called me last night and left a message for me to bring sodas, so I did. Other PAC members got the other hamburger and hot dog fixings donated or bought them and the Chavez's led the barbecue duties. Shayna and Liz came over at some point and we all ate hamburgers around my chair (a new experience). Then Liz and Shayna volunteered with the passing out of food and broiling for awhile before moving on to other Saturday chores. As I sat in my chair observing these events I thought that this is a great fun thing for our committee to do, and that many of these folks probably don’t have their binders with them.

I asked Herman the Nurse if he could contact one of the dieticians to come over and hand out binders to patients to swallow after their meals, and he replied that that was really not a thing that El Milagro could do legally. He and I agreed that it would be a good thing to do, and that the closest we can come to this is to ensure that the next time we have a food thing we ask folks to bring extra binders to gobble along with their food. I had had Herman call Liz to bring my binders, so I did take mine after eating. So here we have a great little event that encourages people to eat dialysis friendly food and not take their binders afterwards…. a diametrically opposed message from the t-shirts staff regularly wear to remind people to take their binders.

Here is the deal with binders ~ When people are on dialysis the process doesn’t adequately remove phosphorous from the person’s system and high phosphorous stimulates overproduction of parathyroid hormone which leads to bone brittleness and itching (first sign of overproduction). Phosphate binders are taken during or right after eating to attach (bind) to the phosphorus in the food and allow it to move into the large intestine rather than be absorbed into the bloodsteam. People on binders poop more. We can reduce phosphorous in our food intake, but since phosphorous is in almost all foods to some extent, usually people on dialysis have to use these binders to help lower it in the system. When I started on binders, Moritz prescribed Renagel and Phoslo and they didn’t work sufficiently for me. So, finally he changed me to Fosrenol and Phoslo and that was the combo that rocked for me. Since I started using Fosrenol I am a clean machine and my phosphorous is usually within the appropriate limits. Hooray for Fosrenol.

So, today when I arrived I told Debbie the Tech congrats for her recent marriage and that the sodas are out in my truck in an ice chest. The staff seemed quite animated today… excited about having a cookout at work… but I couldn’t really tell if the patients were excited… and, of course, I have a chair that faces the back wall (so I can’t see most of the goings-on). Matt cannulates me and we catch up, since I haven’t seen him in ages. Jo the Nurse is here and she thinks that the PAC doing this hamburger thing is a GREAT idea and says how she appreciates it. Rosie the Tech (and PAC member) is here too and all happy about the cookout actually happening, cause she too was unsure about its coming together. Jason the Tech came in late but will eat a hamburger, I predict.

Before Liz and Shayna got here, I read on my Venkatesh book and when they arrived, started watching MSU smear Alabama, thinking, “Wow, it’s college football season again!” A few of the folks here (and Liz) are wearing UT orange in preparation for tonight’s game. So, we have Saturday football, our own tailgate party in the parking lot, and hamburgers without binders before Labor Day! Is the world going too fast or what?

That’s the report for today here in dialy-world.

Notes: In at 72.9 and out at 73.8 kgs.
Heard on NPR: 25% of us U.S. workers took no time off this past summer!
New Readers: For A Welcome Post, click August 2006 on the Sidebar.