184) Weight Ruminations & Glimpses of Mortality

October 30, 2007
Tuesday

El Milagro: Halloween is in full swing here tonight. Staff are dressed up and there are ghostly decorations hanging from the ceilings. I weigh in at 76.9 and ruminate about that all the way over to my chair. Rosie the Cat Tech comes over to poke me. She is dressed in black scrubs with a long black tail pinned to the back of her shirt. She has whiskers drawn on and cat ears stuck in her hair. Phyllis the Nurse is dressed as a nurse and working the updates on the computer. She asks for my weight and I say, “76.9! That’s a little high.”

I go on to ruminate audibly… “Maybe I ate too much over the weekend… but it didn’t seem so… let’s see, I had a salad Sunday night, no huge meals… Maybe I’m drinking too much liquid. I’ve never had to worry about that and don’t want to have to now…” and on and on. She doesn’t seem too worried and says something like “Hummm”. So I continue, “Check my ankles… they don’t seem puffy do they?” She leans over to feel my ankle and replies, “But look at your face. It’s puffy.” “What? Thanks Phyllis” And immediately Rosie starts giggling and then laughing, saying “Puffy like a blowfish.” Phyllis walks off and we are both cracking up… “Puffy face, puffy face” Rosie kids me. And I blow my cheeks out like a blowfish. Phyllis returns and reports that some people do carry water in their upper extremities rather than their feet. And I do look kinda puffy today. She recommends I at least keep track of my liquid intake for awhile to see how much I am ingesting. The limit is around 32 ounces a day for dialysis patients. So I hooked up and left to my own brooding thoughts about weight gain. I grab the clip board with my data and review my weights for the past month… creating the above chart in my head. I notice that my beginning weight is always higher on Tuesdays (10/9, 10/16, 10/23) and goes down over the week of dialysis. What bothers me is that it seems like the Tuesdays start weight is slowly going up over time.

On NPR’s All Things Considered I hear a story comparing Texas’ juvenile justice system to one in Missouri*. We have about a 50% recidivism rate (long known to all who work in TYC and Juvenile Courts… and based on our “whip ‘em into shape” mentality in that system) whereas Missouri has a philosophy of re-training and preparation for adult life in the reported facility. And, their recidivism rate? Well, that would be about 7.3%. Boy. Those Missourian kids must be much more savable than ours! Today they discussed Missouri: tomorrow an interview about the Texas system. I can hardly wait.

Sometime in the middle of this session, Celeste the Nurse comes up and reports that I need to have another series of Hep B shots. I reply that I already had a series and she replies that my recent bloodwork showed that I am susceptible again and need the shots again. I respectfully refuse, saying that I want more information about what’s going on before I decide to get another series. She tries to explain; but her explanation sounds like she is giving it to a non-English speaking idiot: “You must have this shot because the number was 5 on the last lab work.”
“Why was it so low? I just had this series a few months ago. Doesn’t make sense to me”
“The number was 5 and it means you are susceptible and you must have the shot. Will you take the shot?”
“I want to know more about this whole thing before I decide”
“The number is 5 and that indicates you need the shot” This went on for a few minutes and she did bring me a piece of paper that showed a 5 on it. But, that 5 was for a test done in March. I will hold off and talk to either Phyllis or Doc Rowder about the whole thing.

So I read a bit, watch the news, snooze-a-rama, and wake up to watch Frontline… a very fascinating report on an undertaker’s perspective (The Undertaking**) that we are… “among the first couple of generations for whom the presence of the dead at their own funerals has become optional. And I see that as probably not good news for the culture at large." This is what Thomas Lynch; writer, poet, and funeral director in a small town in central Michigan, thinks and states in this thought-provoking report. He goes on to say that "Funerals are the way we close the gap between the death that happens and the death that matters. A good funeral gets the dead where they need to go and the living where they need to be." The show focused on people and their funerals in the frame of a bleak and brown Michigan winter. It reminds me of my childhood and being in Michigan in the winter... must've been when I was about 7 or so. I wonder how close Lynch is to Lawrence, my mom’s home-town in central Michigan. I remember now that behind my Grandmother's house was a cemetery and I used to study the gravestones there.

And as I watch, I can’t help but also think of my dad and if he would have any interest in this guy’s take on death and the preparations for saying “goodbye”. My dad always likes Bill Moyers reports and they have a similar quality of curious thoughtfulness as this report. And, I also think about mine and Liz’s lack of funeral plans. Morbid? Maybe. But it is the day before Halloween. And, as a person entering their 60’s I think it is an important topic to at least bring to the fore and begin to consider. And so I watch this show closely, even through some beginnings of cramping. I work my calves and feet with my hands as I watch different people discuss death and dying and funerals. The cramping never gets screamable and it passes after about 30 minutes. Finally I am still absorbed as Rosie is back to de-cannulate me and patch me up. I sit quietly holding my poke-hole wounds, wondering about discussing this show with Lizzie.

Notes: In at 76.9 and out at 72.8 kgs.
* Beaubien, J. Missouri sees teen offenders as kids, not inmates. Retrieved October 2007 from All Things Considered’s website: http://www.npr.org/templates/story/story.php?storyId=15784264
** Lynch, T. The Undertaking. Retrieved October 2007 from Frontline’s website: http://www.pbs.org/wgbh/pages/frontline/undertaking/etc/synopsis.html
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183) Fall and Nebraska has Fell!

October 27, 2007
Saturday

Morning: Shayna and I go to the soccer fields to have her team pictures made and wait around until the game with the Starlettes. The Kick Kats beat them 7 or 8 to nothing and Shayna goes home with the coach’s daughter so she can make the next game with the Rainbow Sharks at 2. Shayna played forward for the second half, took a number of shots, and made two assists but no goals. DARN! I counsel her: "You played 100% today, and when you throw in from the sidelines, ALWAYS throw down the line!" The coach’s daughter made her first goal ever… and it was called back cause she was off-sides. DARN II!

El Milagro: I walk in with a plate of 36 jam-filled cinnamon butter cookies* that Shayna and I made last night. They are your regular cut out cookies that we cut in the shape of bats and pumpkins at first, but then switched to triangles and diamonds to save batter. "Jam-filled", even though in the title of the recipe, is a misnomer. They actually just have a small dollop of black rasberrry jam on top. These are my contribution to the ‘cookie day’ PAC activity for this month. I see that my fellow PAC member, Germaine has brought over 100 little Halloween cupcakes with black frosting and orange M&M’s on top. My cookies will make a nice, less sugary choice along with her cupcakes.

I place my cookies on the corner of the nurse’s station by the front door and make my way to my chair, today on the back wall in the middle of the room.

Carol the Tech pokes me today and Jo the Nurse checks my heart and ankles. Jo asks my weight: “How much did you weigh?”
“75 even”
“How much you want to take off? 3.9?”
“Oh no! I had cramps last time. Let’s take me down to 73.”

Carol finishes hooking me up and adjusts the machine while Jo documents our plan on the computer. I begin to watch football: Texas Tech and Colorado, with Tech losing to the Buffalo’s ("sorry Michael"). That is surprising to me… I didn’t know Colorado had it in them to beat Tech at home.

Then comes the big game: UT and Nebraska. The REASON I come to dialysis. By half time we are down, 7 to 3 and we have played a lousy first half and Nebraska is playing like they have nothing to loose… and, they do have nothing to loose and everything to gain, since they’ve lost their last four games and they have been playing like their famous ‘black-shirt defense’ has become a ghost of the past. Today the ghost decides to blitz on practically every play and it is working to upset McCoy and the Texas boys. The black shirts are back and are playing rough and wild and UT looks like they have a broomstick up their… they’re very stiff and stilted. At half time I’m depressed, but still able to use a Halloween metaphor in my last sentence!

Carol the Tech puts the cup cakes and my cookies on a little rolling table and glides around the place serving the patients the snacks. I'm thinking that folks like this little snack service and that it is a good thing the PAC is doing.

So, the second half needs to be better and it does get better by the fourth quarter! By the end of the third quarter UT is still down, 17 to 9. All of us at the center who are watching the game are quietly waiting for UT wake up. I count 5 other TV’s channeled to the game. It is Jamaal Charles who comes to show us what he can really do besides fumble the ball. In the 4th quarter Charles runs for 216 yards and 3 TD’s and puts us ahead, 28 to 18! By the final gun we are winners; 28 to 25 and I let out a “WHEW”. My BP was up to 150 / 75 at one point during the 3rd quarter... by the end it is down to 116 / 68. What a game!

As Gladys the Tech unhooks me she asks for the cookie recipe and comments that she and Phyllis the Nurse both like my cookies very much. I didn’t tell her that in the final review we figured out we left out one ingredient (lemon juice)… and they still turned out tasty.

As I weigh out at about 6:30 I recognize that we are getting into the Fall** and it is already almost dark and chilly. The seasons, they are a changing, and I’m suddenly aware that now dialysis is part of my seasonal life and I come and go from this place as the seasons come and go from the calendar. I wonder if this thought is part of my acceptance of this dialysis in my life or if it is just another thought running thru my head. “Hmmm.”

Notes: In at 75.0 and out at 73.0 kgs.
* Jam-filled cinnamon butter cookies. Retrieved online October 2007 from the Kidney Foundation of Canada's website, http://www.kidney.ab.ca/kitchen/recipes/jam_cinnamon_butter_cookies.html
** Leaves pic by Golda, retrieved online October 2007 from http://www.thelensflare.com/u_golda.php
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182) In the Sink-hole Again

October 25, 2007
Thursday (My brother's Birthday!)

El Milagro: I am here and ready for my favorite TV night. Have the corner chair in the back and get into a conversation about the difference between cake donuts and glazed donuts with Rosie the Tech, who reports that the dietician had problems with Pete’s Donut Handout. Gladys comes to poke me while I’m in this discussion and then the doc and the new dietician, Sarah (?) come by to report that my phosphorous is still high at 6 is high but not as high as the now famous Laredo score. He asks if I can up my take to 4 Phoslos at each meal and I agree.

I finish reviewing a article for Social Work in Schools that I was supposed to complete by 9/11 and can’t decide to recommend it or not. I wish I remembered more about ANOVA. I think about it some and go over the diagrams several times and then just give up. I’ll have to look at it later, with my stat book at hand.

I listen to NPR and then watch the news and then Survivor. James the Gravedigger is still in the game, and according to the website, he is the most popular survivor with 41% of the audience! I've picked a winner, unlike many of my political picks. Hopefully he has staying power. Afterwards I switch to Gray’s Anatomy, and about 20 minutes before the end of that show I begin to feel my lips tingling. This is a sign that my BP is fading and pretty soon I’m gonna have fainty feelings and cramps. CRAP! I try to do my laying down pirouettes to help my feet keep the cramps away and breath in and out slowly and deeply, somehow thinking that that can change my whole body chemistry. Nice thought, but not very helpful. Finally my right hand is waving to any tech who can see, and I’m cursing myself inside for slipping down the slippery slide to sub-100 BP. Gabe the Tech comes over and checks my BP and sure enough, my tingly lips are correct… the BP is 94 over 40-something. Oh yeah. Time to slip into the pass out lane… but I never pass out so I just lay back and close my eyes and miss the climax of Gray. With the nurse’s blessing Gabe turns off the machine… I only have about 15 minutes left. He recommends not giving me any liquid, which I agree with. And, I lay there trying to get up enough motivation to open my eyes and watch Gray’s finish. Somehow at these times TV shows loose their interest to me… I just want to sleep or lie there with my internal woozy thoughts wandering around aimlessly in my head.

After 15 minutes or so my BP is back up to the high 90’s over high 50’s and I am raring to go. Gabe finishes de-cannulating me and I sit there another 10 minutes holding my last poke hole while it clots. What a night. I’m ready to head on to the old homestead and see the girls. So it goes on a Thursday.

Notes: In at 75.1 and out at 73.2 kgs.
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181) The Generosity Factor

October 23, 2007
Tuesday

El Milagro: I weigh in, walk in, and wander to the corner chair in front by the window. I have been listening intently to Terry Gross interview Valarie Plame* and am not really completely focusing on being at the dialysis center yet.

Carol the Tech comes over to stick me and Phyllis the Nurse comes by to listen to my heart and converse with the chair side Charlie (the computer). Then Rosie the Tech comes by to slip me a bag of money she has collected under the suspicious eyes of Ron the Boss Nurse. She reminds me that she isn’t supposed to be collecting money from patients and just told him she was doing it for Pete the PAC Secretary because she forgot to bring the donation jar again. I take the money and count it. Rosie reports on Pete’s donut operation last Monday and now the staff wants to make kidney friendly cookies for Saturday. I offer to make some too. The donuts were gobbled up by everyone and volunteers were available to distribute them throughout the day.

Two new people are beside me… they’re about my age I suspect. He wears a ‘gimmie’ hat, blue jeans, and tennies. His wife is a little more conservatively dressed and she looks proper with close cut hair and sitting very straight. She sits beside her man and today they are talking to Sherry Social Worker for their initial interview. He has some questions about his insurance and she and Sherry talk a little about diet and cooking kidney-friendly meals. They are scoping out the whole dialysis center scene and occasionally she leans over and whispers something in his ear. They are friendly enough and Rosie the Gregarious gabs to them as she documents his vitals and he digs in his pocket and brings out some change and hands it to her. She gabs on and then brings me the money for the PAC Donations at the end. I chuckle at the whole thing.

At some point a woman who is always here sitting stoically with her father as he dialyzes comes over to me and says she really likes all the things the PAC is doing and she can’t help or come to meetings because she lives so far away… but she wants to help so she gives me a $10 bill for the kitty. I implore her to not donate so much money unless she really can afford it and she shakes her head a universal “No”. She is adamant that she wants to give this money so I reluctantly add it to the bag and thank her profusely. She says that she loves the sense of community that we have at the center and she wants to be part of the love. And her generosity doubles our collected funds!

I listen to All Things Considered, watch the ABC News, and then drift off for a nap… waking in time to catch NOVA.

Notes: In at 76.1 and out at 73.6 kgs.
*”Fair Game tells Plame saga from her viewpoint” Retrieved October 2007 online from Fresh Air’s website, http://www.npr.org/templates/story/story.php?storyId=15553270
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180) John's Birthday

October 20, 2007
Saturday

Morning: Shayna’s soccer team played the Blue Angels this morning and came out of it with a 2-2 tie. It was a brightly cool morning of coffee, dewy fresh cut lawns, and brisk soccer… made even better by having Johnny on the sidelines with us. A good game, in that Shayna played aggressively and made some good defensive plays. I hallucinate that she is playing extra hard for her brother. Kick Kats scored first and then the Angels scored twice and finally, the Kick Kats’ Kiki ran straight through their goalie to score the final goal! Today is son John’s 23rd birthday--> and he came into town last night for the weekend. We took him out to eat at my new favorite restaurant, Sazon* and then got him up early this morning for the 8 a.m. game. After the game we rushed home to say “goodbye” to Ann, our house-guest from Baton Rouge when Frank picked her up. Frank invited Johnny to go on one of his sailing ventures sometime, and then Johnny and I went over to our taco palace for breakfast tacos and cinnamon rolls. We hung out, did his laundry, visited, inspected the back 40 fencing plans, and generally had a good father-son tete-a-tete for the rest of the morning. It is never long enough though and as I got ready for dialysis, John headed out to his mom’s house for the rest of the weekend. I tried to get him to check his oil on Kim's old Honda but his zen existence of living in the present couldn't be slowed by the detour of getting back out of the driver's seat of his life to check the oil. That's an old person's tao. We grin at each other and he hot rods down the street like a little blue bug running for his life.

El Milagro: I walk in slightly after 1 p.m. and walk around looking at all the TV’s for the Texas / Baylor game. John the New Guy says it’s not on TV so I settle in to my chair and settle for watching OU / ISU. None of the nurses come by today to listen to my heart and feel my ankles. Jason comes over to cannulate me with his usual cautious and gentle feels and pokes and checks and questions: “Does that feel okay?” as he pulls blood into a syringe and pushes it back… pulls it out and pushes it back… “Yeah. Smooth." These checks are to ensure the needle is set well in the middle of the vein and not rubbing up against the side. I watch the game for awhile and ISU is looking much better than last week against Texas.

I surf the channels and find an interesting news item on CNN: The Dalai Lama accepting the Congressional Gold Medal (last Wednesday). Listening to his talk reminds me that he is an exemplar of graciousness and love of humanity. He concluded his speech by asking us to “take a leadership role (to) …address …global issues from the perspective of the oneness of humanity, and from a profound understanding of the deeply interconnected nature of our today’s world.” As all great spiritual beings, I feel moved just listening to his voice. So, this is an uplifting experience as I sit here having my blood cleaned. So it goes.

Notes: In at 74.4 and out at 72.4 kgs.
* Sazon online at: http://www.sazonaustin.com
** His Holiness’ Speech at the Congressional Gold Medal Award Ceremony, retrieved online October 2007 from the Dalai Lama’s website: http://www.dalailama.com/news.171.htm
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179) Fire Drill @ El MIlagro

October 18, 2007
Thursday

El Milagro: Checked in for “TV night”, ready to sit back, relax, and watch some tube (Survivor & Gray’s Anatomy). Dr. Rowder came by to do his weekly check. I’m fine; he’s fine; and everything is hunky dory. He reports that all my lab work looks good. Carol the Tech comes over to poke me and hook me up, and Phyllis the Nurse listens to my back and front and declares me “alive”. Then Jennifer the Dietician follows-up the doc with a paper copy of my labs, and goes over them test by test: Albumen, good; nPCR HD UKM (protein intake), good; HCT CALC (red blood cell count), good; Iron Saturation, good; Ferritin (stored iron), good; Calcium, good; Phosphorous, getting better (still recovering from Laredo); CAxPHOS Corrected (Ca x PH product), good; PHT Intact (parathyroid hormone), good; Potassium, good; KT/V UKM Delivered, good; and Glucose, good. Jennifer said that she’ll be out for a couple weeks in Louisiana getting married. We discussed Catholicism and Judaism for awhile and she moved on.

There’s a new guy across the way today (looks to be in his late 20’s, early 30’s) and the rumors are that he has been on dialysis since he was six months old! They say he’s had several failed transplants… and I think, “So, he must be really used to this routine… why has he changed to this facility?”

Since I might be involved in a conference call with the Patient Ambassador's group and Doggett’s office about the Kidney Care & Quality Education Act, I ask Phyllis to explain Epogen to me. She reports that they have me on a “maintenance” dosage of Epogen (4400 units). She said back when I was really anemic they started me with more and then scaled it back to the current dosage. She also said (again) that epogen has changed the landscape of dialysis; before epogen many of the patients who were anemic had to have transfussions in the center. Now that they use epogen, there are hardly any transfusions going on here. The dosage is figured on the formula of 100 units per kilogram of body weight.

Next we have a surprise fire drill! And it's not the Chinese variety. Suzanne the Administrator comes in from the back, ringing a school bell and yelling "Fire Drill!" No one does anything until the techs and nurses walk around explaining to people what we would do if it really was a fire. So, the routine is this:

1) Push the "Stop Pump" button on your machine;
2) Clamp off your arterial and venous lines to the machine;
3) Un hook the lines to the machine;
4) Say "Goodbye" to the blood your machine is holding, and
5) Evacuate the room (front half out the front, back half out the back).

The patients don't seem overly excited or even interested in this fire drill activity, although I think it is neat and fun. They should do fun things like this more often. I want to actually unhook myself and book out the back door, but Phyllis says, "NO Jack!" She also warns me that in a real situation, we don't stop to pump people's blood back into them. They just have to give it up in the name of efficient evacuation of the building. Oh well. A vampire would love a fire in the dialysis center... all that lushous blood sitting in those machines... yum yum.

<---[An interesting painting I found online today*]

Survivor is kind of boring tonight, except for the possibly 'racist' attempted sacrifice of James the Gravedigger... making him my favorite participant for this series. Will he make it another week? Only if Jeff juggles the teams again, I think.

Gray's is the usual fare of soap operaish dribble and foible. I don't know about it this season: it's almost too much to watch anymore. So it goes.

Notes: In at 74.8 and out at 72.8 kgs.
*Grockel, A. ~ Celebration. Retrieved online from http://www.art.com/asp/sp-asp/_/PD--10220037/SP--A/IGID--1064921/Celebration.htm?sOrig=SCH&ui=9042A656AF19453DB559975ADFB82963
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178) Blood Work Tuesday

October 16, 2007
Tuesday

El Milagro: I weigh in pretty high today… one of the normalish occurances on Tuesday, after being away from here since Saturday and eating hearty over the weekend… I gain weight. Today it is 76.2 and I know I don’t want to drop 4 pounds because that can be a path through time to cramp-land by the end of the session. So, I direct Debbie the Tech to “take off 3” and she replies, “3.5?” and I nod in agreement. She documents our plans in the computer and a few minutes later Rosie the Tech comes over and sticks me. Today is lab work, so before hooking me up Rosie sets the arterial needle and venous needle and then uses the arterial needle to collect three vials of blood: one for sending to San Antonio for checking my current antibodies, a vial for the lab to check my potassium and phosphorous, and a vial for the billy goats three.

I sleep (was up late last night waiting for our houseguest from Baton Rouge, who is in Austin for a Training of Trainers for Frank’s CYC Institute*. She was held up in Houston and didn’t get dropped off here by Frank and Pam until 11:30 pm.)

I watch Frontline’s Cheney’s Law episode, in which we learn how Dick Cheney “conducted a secretive, behind-closed-doors campaign to give the president virtually unlimited wartime power. Finally, in the aftermath of 9/11, the Justice Department and the White House made a number of controversial legal decisions. Orchestrated by Cheney and his lawyer David Addington, the department interpreted executive power in an expansive and extraordinary way, granting President George W. Bush the power to detain, interrogate, torture, wiretap and spy -- without congressional approval or judicial review.”**

Rosie takes me off and we discuss cooking Mexicano.

Notes: In at 76.2and out at 73.3 kgs.
* CYC Institute website online at: http://www.cyccertification.org/about.asp
**Cheney’s Law (Oct. 16, 2007) Retrieved October 2007 online from Frontline’s website, http://www.pbs.org/wgbh/pages/frontline/cheney/view/
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176) College Football & Dialysis

October 13, 2007
Saturday

Morning: Shayna's soccer team won against the Tigers this morning; Shayna played well on offense and defense and they won 4 to zip. The refs seemed a lot more careful and fair this week after Coach Charlie's letter to SAYSA about the poor quality of reffing last weekend. The head of the refs came by and gave some pointers to the flagger right in front of our parents, showing his concern I hallucinate.

From Futbol to Football: I check my TV and find out UT isn't playing on any channel I have so I call El Milagro and talk to Gabe the Tech who checks and reports I can come in at 1 p.m. So, I'll catch the last half of the game. If we don't win this one against ISU, we have no business being a football team.

El Milagro: I arrive and immediately look around to find the Spanish version of the newsletter. They printed it directly from the PDF so it looks way better than the English one. I weigh in and go find my chair. Rosie the Tech cannulates me and Jo the Nurse listens to my heart. My BP is a bit low.

It is right at half time in the UT / ISU game and finally we are ahead like we should be in a game; 21 to 3. I watch the rest of the game happily and it ends up with UT smearing ISU and I feel almost delirious. This is an example of external events impacting internal sensations. There is an external event (behavior) that is evaluated positively by our thoughts (internal computation), which influences our feelings (internal states), according to NLP. This structural schema is what makes NLP a "behavioral" approach, BTW.

After the UT success I watch the Texas Tech / Texas A&M game and witness Tech bring A&M to their knees by 28 points. My brother, Michael, is dancing in glee I'm sure.

So, today is football watching day at the dialysis center. It is pretty quiet and uneventful here and I notice lots of TVs are tuned to various football games during my stay. If it weren't for the intermittent beeps of the machines we could all be cozy at home on our couches watching our games. Actually, Saturday sports can just as well be watched here as at home, and for those of us who don't have the multi-option cable service, here is even better. For those of us who actually focus on our TV watching, sitting here with earphones clamped to our heads in our own little zone is vastly better than watching a game with children running about yelling and relatives stopping by to visit and converse across the space between the TV and the viewer (not that that ever happens to me). The only thing lacking for a perfect world around here is the beer and potato chips... which really don't mix with dialysis.

After the Tech game, I wrap up my session with a lowish BP (105 over 65), weigh out, and jump in my truck to drive west towards my house. The sun is lowering into the horizon and I have to lower my sun visor as I drive directly into the sun. Even though I am tired, I notice that the weather is beautiful today and I am still feeling jubilant. At home I pull into my driveway, exit the truck, and turn off the water I left dribbling into my cactus garden. As usual, after dialysis, I am tired and spent... I take my BP and it is now 99 / 65 and I turn on KUT and rest on my own couch until Liz gets home. What a Saturday!

Notes: In at 74.3 Kgs and out at 72.3 Kgs.

175) A Village Loss

October 11, 2007
Thursday

El Milagro: I hear through the grapevine today that we had a death in the center (very unusual for people to die here) this morning… staff is more docile than usual, it seems to me. The rumor is that Ms. S. came for dialysis and looked fine to everyone. She was hooked up and when staff came to give her her meds they observed her eyes rolled back in their sockets. The staff jumped into emergency mode and tried to revive her while calling 911 and the doctor-on-call. After spending some time trying resuscitation techniques on her body, laid out on the floor, staff put her back on a recliner and surrounded her with privacy screens. She had departed this world. One staff reported to me that it was “real nice” how respectful and gentle the staff were with Ms. S’s body. Three police units, the fire department resuscitation unit, Dr. Moritz, and the coroner all arrived and the staff and folks on their machines got real quiet as the authorities went about their duties. I hear that our departed villager is survived by eight children… all but one grown up and out on their own… and, that she had been on dialysis about a year and a half… and had other medical problems and a hard life. DaVita will send sympathy cards to the family. The staff here are very compassionate people and when something like this happens they go about their duties under a pall of somberness. It seems that when there is some emotionally stressful going on a number of staff drift about and will quietly share their feelings with me... perhaps because they perceive me as a person who listens (bears witness) to their pain. And maybe that's just my hallucination and I am the one who ferrets out the details of these happenings to post in this blog. Or, maybe it is a bit of both.

Carol the Tech is cannulating me and we review my dry weight and it is recorded now as 72.7 (160 lbs) and she hooks me up and sets the machine to take off 2.1 kgs. I tell her about my last session cramps and she replies, “that’s cause you left here at 71.6 last time”.

When I got here today I immediately found Angie the Administrative Assistant to get copies of the new newsletter to hand out to my shift. I picked up a stack and started on my delivery route… and, noticed the copies were… being polite… less than adequate. The front top corner showed a folded-over corner and the darker graphics copied as black boxes. I gave myself a few deep breathes to calm down and then returned to Angie to ask what happened. Turns out she copied from a stapled copy of the document, instead of copying directly from the PDF file. I sternly asked her to copy directly from the PDF next time and she smiled. I held myself from asking what the Hell she was thinking when she was making our copies, and does she think that the way they came out is acceptable. I walked away telling myself, “If you want something done right… do it yourself.” Passing out the newsletter, I felt like apologizing for it’s looks, but I just pleasantly said “Hi”, “How ya doin?”, “Here’s the newsletter”, and stuff like that.

Tonight is TV night in dialy-land… so I watch the ABC News, Survivor, and most of Gray’s Anatomy. Survivor is in China this time and seems more back on the interesting-to-watch than last season. I’m not sure who I favor yet and am just enjoying watching these people get to know each other. And, yes, I do know that it’s not reality… it’s a weird sort of meta-reality where people don’t really act like themselves… and yet… they still have quasi-human interactions that are metaphors of the real world. fl the way I see it.

So it goes.

Notes: In at 74.3 and out at 72.4 kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

174) Food & Forgetfulness

October 8, 2007
Tuesday

Homeside Reflections: I took some notes last Saturday for this blog and neglected to post them because of my depressed state about UT losing to OU in Dallas. What a good exciting beginning of an ultimately terrible loss. I got off my machine at El Milagro just as OU picked up a tipped pass in the fourth quarter and it looked to be going quickly downhill. That day I felt really puny anyway and had missed Shayna's early morning soccer game. Probably felt puny from working 15 hours on Friday, flying out to Amarillo to do some work with an agency out there and then getting stalled in Dallas on the way home. It is the norm for even Southwest Airlines to slow down on Friday evenings... so I had a delay in Dallas and didn't get home until 10:15 that night. I had also ended up eating some BAD, high phosphorous stuff in the bar in Amarillo because they didn't have anything that would be healthy for me.

I find that when I am traveling and get hungry, I don't seem to care as much about my special diet... I just take whatever I can get. I do take extra binders with me usually! That airport bar in Amarillo doesn't have chips and salsa (half okay)... only chips and queso (plastic velveeta and ro-tel... really BAD). "Oh well... just a little won't hurt..." I rationalize. At home or in a restaurant with friends and relations, I'd never roll over like that. But, by myself in the airport bar in Amarillo... (sounds like it could be song...). And, of course, who can turn down the free peanuts on SW Airlines? They're such cute little bags of sweetened nuts... I even tried telling myself "You're alergic to nuts" but I didn't believe myself even for a minute. And a minute is about how long it takes to devour the contents of one of those cute little bags.

I spent my blogging time over the weekend working on issue #5 of the El Milagro News; my contribution to the Patient Advisory Committee. As there is more to report, this newsletter business is taking more and more time. Sunday's time was about 4 hours and I missed Shayna's winning her first cross country bike race. I must say, that morning when they tried to get me up to go watch before sunrise... I was rolling over in bed saying, "No! I'm too tired..." and only later wished they had dragged me out. I promised I will watch the next bike race. When I finally got up, I was feeling dragged out, still UT-down, and barely could haul myself to my work computer (publisher) to work on the newsletter.

I Can No Longer Multi-task: I do a great job of thinking about what I’m thinking about… but I’m having a helluva time keeping in mind things I’m not focused on. I used to excuse that by saying, “those things just aren’t important to me…”. This morning Lizzie set my dialysis bag out in the middle of the hall and reminded me to put it in my truck. Here I am driving through the park on the way to the center and it pops into my head that I don’t have it. “Damn!” How does that spontaneous popping happen?

El Milagro: I walk in without my bag, feeling naked. I’m beside John the New Guy today. Rosie gets around to sticking me after I’ve been here about 30 minutes… while I talk to John about getting back in the job market. He shares that he is going crazy not working… he had to quit his high power job when he started dialysis and now that he is adjusted here he wants to get back to work. I can certainly understand that: without work, this would be a real drag. He is thinking about what kind of work he can do. I offer that he could do some volunteer work (tutoring, mentoring) until he finds a job.

I know how to forget things; not how to make them important enough to remember. I used to be better at remembering an unrelated group of things… for years I wrote lists and at work I still do. I am an old time Time Design guy from way back.

I remember important stuff pretty well. I knew this guy when I lived in Waco back in ’82. He was one of those quasi-intellectual self-made men who multi-task quite well. He had grown up in a spiritual commune called the Emissaries of Divine Light. Well, as an adult he moved out on his own and what I always remember is that he kept ONE LIST and it had everything on it: things he had to do today, next week, and next month. Intermixed there on his list were things to buy at the hardware store and the grocery store… things he wanted to remember, books to read, and ideas to ponder. All on ONE list. I thought it was peculiar. I can’t remember his name… but he reminded me of Gyro Gearloose. His list was in a tattered ledger-type book with a rubber band holding his place… and, I recall that he got tons of stuff accomplished.

Back here at El Milagro, I am thinking that I forgot something else… oh yeah. My weight. I recall it slowly when Rosie the Tech asks for it and then wander off in my brain to consider my rationale for remembering or forgetting things. When I forget something I could fret about it, or I can do what I do: happily tell myself, “out of mind…, no more worry.”, trusting that the object of my inquiry will pop back in when I need to remember it. Some people would call that lazy brain and I prefer to call it the Zen approach.

I tell Rosie that I have completed the newsletter and sent it in to be copied. She gets Mario on the phone so we can talk about his completing the Spanish version. She also brings me a blanket and earphones to use for the session and I settle in to viewing the tube. About 5 minutes before I’m done I get attacked by excruciating cramps in both my calves at the same time. Yowzah… that hurts. I struggle to bend my feet up and Rosie comes over and pushes against my feet. She stops the machine and adds some liquid while I try to push my feet against the floor to stop the cramping. Within those 5 minutes it’s over, my BP has dropped to about 90 over 50 and I feel dizzy, drained, and ready to call it a night. Darn! I hate it when that happens. Rosie thinks I’ve probably gained a little weight, making our figuring of how much to take off wrong. “Well okay…. Lets just get it right next time”, I think.

So it goes.

Notes: In at 76.1 and out at 72.8 kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

173) Feelings

October 2, 2007
Tuesday

El Milagro: Here I am again… and the regimen is the same: Carol the Tech cannulates me and her back is better… Kim the Nurse listens to my back and chest and fistula and asks if I have ever heard of a magazine whose name escapes me 20 seconds after I answer that it sounds like some sort of religious tome. I am particularly conscious of how I am feeling tonight, since having such a miserable session last time. I weighed in at 76.4 and Nurse Kim wanted to ‘take off’ four at first, but I cringed at that! I reported to her about my cramps and we decided to 'take off' three instead. She commented that maybe I am just gaining some weight, which also made me flinch. Let’s see, 76.4 kgs is about 10 pounds over what I envision myself usually weighing. Would I rather change my vision of myself, or avoid cramps? Hmmmm. I guess I choose no cramps and I’ll just ignore the weight thing and eat less food too.

John the newish guy is sitting next to me and seems in a good mood: he is joking with the staff and smiling. That’s good. He responds to my salutation that he is adjusting and doing much better and I think that that is a good attitude to have, since none of us can really change our situations and we might as well find a way to enjoy them. I wonder many times if my often-noted acceptance quote is really about accepting what we cannot change, or is it an existential excuse for relinquishing the control we perceive we might have over any situation. It is somewhat comforting to state that acceptance is a possible strategy in integrating our dis-EASE. But I sometimes think that I should consider the more aggressive approaches. Some talk about "fighting" the dis-ease and to me that sounds like a more nihilistic or dialectical approach. When we fight something we are focusing on differences in order to define that which we are against. I prefer, most of the time, the approach of inclusion: drawing the other into ourselves and incorporating it into our strategy. Somehow, including the strengths and negatives of the other into our own reality and using what we can from this knowledge, makes more sense to me. I am now wandering around in my own brain universe and feel like floating lost in space. Enough already!

I listen to NPR's All Things Considered, watch the ABC News, and then channel surf around to see what’s available for vacant brain viewing… a cops-type channel captures me for awhile, with it’s “extreme car chases” and the inevitable car crashes. Finally this bores me too and I remember that Ken Burns’ War is on PBS and switch over there to finish my session. This is the last episode and of course it finishes with the grossly irreconcilable images of emaciated, sunken eyed Jews being carried out of the death camps against those of gleeful GI’s hugging and kissing the girls on the docks of their return. Powerful show shown at an appropriate time.

Burns finishes as I finish and I have this powerful urge to rush home to Lizzie and Shayna and immerse myself in that comfortable reality. I drive carefully on the way home and as I walk in, my house is just as warm and homey as usual… and I sigh in relief. So it goes.

Notes: In at 76.4 and out at 73.5 kgs.
New Picture: See Post #166 for a picture of me and EJ with Rep. Kevin Brady from Conroe.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

172) Not a Good Day at All

September 29, 2007
Saturday

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
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

171) Off the Wagon in Laredo

September 27, 2007
Thursday

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.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

170) Shayna is Eleven Today!

September 25, 2007

Tuesday

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!
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

169) Back Home Again

September 22, 2007
Saturday

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.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

168) DC Dialysis @ K Street

September 20, 2007
Thursday

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.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

167) American Kidney Foundation & Vascular Access

September 20, 2007
Thursday

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”.

Notes:
* 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.