52) Red Corpuscles Marching As To Bathe

September 9, 2006
Saturday

Saturday Morning: My 10-year-old's first soccer game of the new season and she already won her first dollar! When Shayna scores I give her a dollar, and she scored the tieing goal this morning, making it 3 to 3. Her team, the Kick Kats went on to win 6 to 3 over the Lava Jets. “Go Kick Kats!”

El Milagro: Got in at noon today, which means I’ll get out at 4. Matt cannulated me today. Sandra who says “Help” is in the chair right in front of me, laying sideways in the chair like a teenager. She is saying an audible “help” every few minutes, whenever she thinks about it. Throughout the afternoon various staff try to pacify her. Matt tries to be nice and Wilma tries the stern approach. Both ask Sandra at some point what she wants. “Jewelry” she responds. “Jewelry? You give me some, or I give you some?” Matt asks. She says, clear as a bell, “You give me some.” So he cuts a wrist-ring off a glove and slips it over her wrist, calling it jewelry. That mollifies her for about 5 minutes and then we hear her “help” again.

Connie the Nurse from Moritz’s office is moonlighting here today, and reports that the doc’s office has had to add another doc because they are so busy with patients in the hospital. She reports that she still reads this blog every day at lunch (YEA Connie!) Debbie the Tech and I talk briefly about James Avery charm bracelets when I see her wearing one.

Today I am spending some time meditating so I can write about it. Yesterday I was talking to my friend Melissa and she asked if I ever meditated at dialysis, to which I replied that I occasionally did… but I haven’t normally described here my meditations in these posts. They range from breath work to visualizations. Breath work isn’t that interesting to describe but my visualizations might be. I have earlier described various meditations in Posts # 2 and # 9 in April and Post # 38 (Friday) in August.

Sometimes I spend time picturing my little army of red corpuscles (erythrocytes)* marching out of my arterial vein into the dialysis machine to be cleaned. They’re like Dorothy and her crew getting cleaned up in the Emerald City, except they’re a whole army of little guys that look like red Werner’s caramels. These dirty, muddy, splotchy little corpuscles and their officers (in their little white helmets) float-march up a stream of plasma, from my arterial vein through the translucent tube into the dialysis machine. There’s about 96% reds and 3% whites and 1% generals (the platelets). Somewhere in the confines of that aluminum box with dials and gauges they are being scrubbed, filtered, and inspected, Then out they come, swimming like the beauties in Esther Williams’ water ballet, back into my body all sparkly clean and with a gleam glinting from their brilliant white teeth. They’re again ready to chomp into the many toxins they gobble. That’s the way it seems to me.

Notes: In at 73.3 Kg. and out at 70.5 Kg.
*“Blood” Retrieved September 9 online from Wikipedia http://en.wikipedia.org/wiki/Blood
New readers: See an orientation to this blog at Post # 47 in August.

51) The Phosphorous Report II

September 7, 2006
Thursday

El Milagro: I had to wait about 30 minutes to get my chair today. Melanie (a relief, or part time worker whose been doing this for 17 years) cannulated me today. I conferred with Jennifer the Dietician today about my last lab work. She reported that my phosphorous is down to 6.1 which is good, but not good enough (it should be at 5.5 or less). My calcium count is good. Also, my PTH intact (the most important regulator of body calcium and phosphorus, is a protein hormone secreted by the parathyroid gland.*) is still very high at 893 (controlled by the Sensipar). Normal is 300. We agreed that I should continue taking 3 PhosLo and 5 Renagel at each meal and two Sensipar after dinner until my next lab, next Tuesday.**

Also, we discussed my sporadic nauseousness in the mornings and she is thinking that I should be checking my blood pressure in the mornings because the nausea probably isn’t related to the PhosLo or Renagel but might be in response to discontinuing my nightly BP medicine. So, I’m back to checking and recording BP for awhile. It’s always gonna be something.

Notes: In at 73.6 Kg. and out at 71.4 Kg. (157 lbs).
New readers: see an orientation to this blog at Post # 47 in August.
* Juan, D. (2006) PTH. Retrieved September 7 online from Medline Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm
** See Post # 34 in April for more on phosphorous

50) WOW: Post # 50!

September 5, 2006
Tuesday

El Milagro: I weighed in at 75.5 Kg. today… that’s 166.4 pounds! I really ate too much this past holiday weekend, or I really pushed my kidneys since Saturday… I’m not sure which. And, I broke my “enchilada boycott” by eating about 10 chile rellenos (which also have cheese). I couldn’t help it… I am a weak person when it comes to fresh chile rellenos. I took plenty of binders, so we’ll see if my phosphorous count goes up or if the binders did any good. I haven’t seen a phosphorous count since I added 3 PhosLo* caps at each meal about a month ago, even though Drugs.com recommends checking the serum calcium level bi-weekly. One of the adverse reactions is increased nausea, which I have had some of in the mid-mornings. I have been assuming it is coffee on an empty stomach, but perhaps it is the PhosLo. I will have to discuss this with Jennifer the Dietician. According to the web ref, “More severe hypercalcemia is associated with confusion, delirium, stupor and coma.”, so I hope I don’t get that! My brain is already fuzzy enough, thank you.

So, a tech whose name I don’t know cannulated me today and did an okay job. However, the machine was touchy and he couldn’t get it to stop warning him there might be air bubbles in the line. He assured me all was okay, and finally got things running smoothly.

The highlight of the session was watching the new CBS News with Katie Couric. Well, she’s no Dan Rather. She’s no Walter Cronkite either. In fact, she is just like Katie Couric and I’m afraid the CBS News is gonna be just another ‘news magazine’. But the hype worked: according to Market Watch, the show was the “highest-rated "CBS Evening News" broadcast since Feb. 23, 1998”** From my perspective, laying back in my dialysis chair, I am thinking it is watered down news aimed at an audience of people who need the news explained to them. Katie seems to want to bring the viewer into the broadcast and be the expert… a very post-modern approach that opinionizes the formerly ‘objective’ news. Well, we all know that there hasn’t been objective news for years, but to ask the public what they think takes it a bit too far, in my estimation. She is cutsie and I expect that’s what the big wigs at CBS want. They seem to be still reeling from ousting Dan and trying to look new and different. When they got rid of Dan, I started watching ABC and mostly PBS’s Newshour with Jim Lehrer. I doubt if Katie Couric will bring me back to CBS, but I am curiously watching for a few days to see what she’s got.

Notes: In at 75.5 Kg. and out at 70.7 Kg. (156 lbs)
* PDR drug information for PhosLo tablets (2006) Retrieved online 9/6/06 from Drugs.com at http://www.drugs.com/PDR/PhosLo_Tablets.html
** Wilkerson, D. (2006) Couric takes top spot in overnight ratings. Retrieved online 9/6/06 from Market Watch News, http://www.marketwatch.com/news/story/story.aspx?guid=%7B69D8E844-B558-4110-8FE5-22B2153616A6%7D

49) A Bit of Hell

September 2, 2006
Saturday

El Milagro: For the first time since I started, I couldn’t get in one bit early today, so I started at 3 pm. When I walked up to the door today, a guy that I see who is fairly new was standing outside smoking a cigarette. I said “Hi” and he said something like “Ready for a bit of Hell?” That comment took me back a bit, but I just replied, “Yeah, another day, another dollar”, or something like that. Later, after the brief pain of being poked, I sat there thinking about that little interaction.

I suppose, for some people, dialysis is a ‘bit of Hell’. There are people in dialysis who moan (aside from the woman who says “Help” and isn’t really in her right mind) and people who just have this attitude of despair about them. I recall again when I first met Amanda and she said, “Sorry to meet you this way”, not that I think Amanda has a negative attitude. There are however, many people at that place who think of themselves as ‘SICK’ and there are many people outside of that place who think of me as ‘sick’. They always get a very serious look on their face, lean forward so we have an intimate connection, and say something like, “So, how ARE you…. really?”. And I, of course, say something like “I’m still kicking”.

Back in El Paso, in high school in the early 60's, we used to have this label for a certain category of people who we called ‘shit kickers’. They were the guys who grew up on farms or ranches and wore their cowboy boots to school because that’s all the shoes they had. (My dialysis staff friends from Fabens will understand this part). And, there were also kicker wanna-be’s, who grew up in suburbia and got some boots and went down to the lower valley just looking for shit to kick. Membership in FFA usually separated the two groups. So, anyhow, when I say, “I’m still kickin’” I’m picturing myself in my fanciest boots, strolling along, kicking cow patties off to either side of the path. And that image is one of being alive in the most pungent way.

Or, sometimes I say, “I’m still alive” as a little bite, inferring that there is the chance I wouldn’t be. And, with some people, I just lean forward seriously and say something like, “I’m doin much better now that I run my blood thru that machine 12 hours a week.” And that’s more like the real serious truth. Dialysis does a good job of keeping me on the planet and I feel very fortunate that that piece of equipment exists in the post-modern world.

Dialysis is not really ‘a bit of Hell’ for me. It is as an opportunity for me to take a break from the crazy, busy world we live in these days. I have to go there and have to get the toxins sucked outa my blood, and there is no way around it. I have to do it. How I frame it can either be helpful to me or harmful to me, emotionally. I like to frame the whole experience as an opportunity to take a break. I heard on the news that Americans take less vacation than any of the other technologically advanced countries. While Americans average 10 days of vacation a year, the Japanese take 17, French 25, and Italians 20. On an average, Americans are entitled to 16 days a year, so they aren’t even using their quota. As we approach Labor Day, it is interesting to note that many Americans are workaholics. I know it would surprise my Dad, but I could be one. I end every fiscal year with more than a week of hours (60 this year) that I have worked more than my required time. Of course, that is a figment of my imagination, because as a “salaried” employee I have to work until the job is done, no matter how many hours it takes. It always takes longer than a 40 hour week. The guy on the news segment last night works about 18 hours a day, every day… so, he is in much worse shape than I. But the point is this: we all work too much. My dialysis is forcing me to take a break. I should be happy, no? My dialysis gives me time for reading, watching cable TV (Discovery Channel, etc.), nap time, and ‘down’ time. And that's a good thing! Aside from the fact that I have to do it. It's all about HOW you do it that counts. And that’s the way I see it.

Notes: In at 72.4 Kg. and out at 71.2 Kg.

Later (9/4): A special thanks to Margo for leaning over on the porch last night and saying "How are you, really?" and having the conversation with me about attitudes and frames which was teleported in time to this earlier post.

48) Tuesday Thursday Report

August 31, 2006
Thursday

El Milagro: Diane cannulated me. I am reading Never Let Me Go, by Kazuo Ishiguro and it is quite slow on the take, but Kim’s David recommended it so I am trudging into it. I am almost looking for distractions from my reading and see Jennifer the Dietician walking by on her way to consult with someone else and I call her over. She says, “I hope your new blood work looks better. Keep our fingers crossed” and I reply that I plan to break all my rules this weekend and eat chile rellenos at my annual chile roast, explaining that we roast about 40 lbs. of green chiles and freeze them for the year. Like canning, but with chiles. Then, we take the nicest ones and cook up about 60 chile rellenos and have a relleno feast. So, then we talk about chile rellenos because she knows nothing about them, being from Louisiana. She imagines that chile rellenos is some sort of dip that we put chips into. I clarify for her exactly what a chile roast is, and what a relleno is.

So, then she says, well you better take your binders and I say I’m taking them all the time; 5 renagel and 3 phoslo… and then she says “8 at a time?” Turns out she meant I should be taking 5 total, not 5 + 3… so I better have a better phosphorus count since I’m taking 3 more binders than she meant for me to take. We’ll see my new blood results next Tuesday. They are off schedule because of the hurricane in Florida. What? “Yes”, she says, “They send our blood to Florida to a lab…” and then she adds almost apologetically, “I know nothing about the lab business.”

Later I watch the news, take a nap, and read another few pages of Ishiguro. So it goes.

Notes: In at 74.1 Kg. and out at 71.4 Kg.

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August 29, 2006
Tuesday

El Milagro: Carol cannulated me. My BP was high all through the session…. Moritz stopped by and asked about my BP, to which I responded that today is unusual. I took a nap. At the end of my session I noticed Amanda was there but we didn’t talk. I wonder if she has read these posts and how they mesh with her experiences here. Aside from staff, she is the only patient whom I’ve shared this blog with and it will be interesting to discuss it with her at some point. Maybe she’ll come out of lurkdom and make a comment.

Notes: In at 72.7 Kg. and out at 70.9 Kg.

47) WELCOME NEW READERS

Notes for New Readers: Since I handed out about 35 business cards with my blog address stamped on the back at the TNOYS Statewide Conference this week, I anticipate a number of first-timers visiting here. For you all, here is a map of this blog.

Along the black RIGHT SIDEBAR you will notice there are various informational LINKS to websites about kidney-related topics.

Below the informational links are the PREVIOUS POSTS links for the latest month. Generally I write one post each time I go for dialysis and it starts with my experience in the dialysis center and then, many times expands in whatever way my mind is going at the time. Since I go for dialysis three times a week on TTS there are usually three posts per week. I aim for ironic, humorous, thought-provoking, or at least interesting anecdotes related to my experiences.

Below the Previous Posts are the ARCHIVES. These are previous posts by month. I started this blog in April 2006, when I started dialysis. If you want to read about my introduction to dialysis and the experiences of my first session, you need to click on April and page to the bottom, since posts on blogs are always listed with the most recent date first. A basic review of posts by month is as follows:

April ~ In which Jack experiences dialysis for the first times; learns about how they measure the dialysis (urea reduction); has infiltration bruising, introduces my Doctor Moritz, the Kidney Guru; and explains my general theory of life.

May ~ In which Jack experiences more dialysis; learns about watching and lowering phosphorous; writes various personality studies of my dialysis colleagues and the staff; reports my brief history of dealing with the medical establishment; writes about AV fistulas, morphic fields, and systems thoughts; explains parathyroid glands; and notes about going to the early shift.

June ~ In which Jack Integrates dialysis with the Kerrville Folk Festival; discusses transplant possibilities; is the victim of a critical incident at the center (and the aftermath); reports more about kidney donations in the news; and posts some thoughts on driving north from Laredo.

July ~ In which Jack (and good friend Hans) write about the Ethics of Transplants; writes more about phosphorous; takes a vacation to Dallas; describes being a bionic man; stops eating enchiladas; discusses “Hallucinations” and muscle cramping during dialysis; and compares Dr. Moritz to Captain Picard when he was assimilated by the Borg.

August ~ In which Jack reads summer novels; talks to his kidney cysts in a TNOYS training; gets bored with the whole dialysis scene; reports on his dad’s new book; reports on gas mileage and pickup truck tailgates; and worries about his phosphorous getting really high.

For new readers; a Glossary of terms:
El Milagro (the miracle) is the center where I receive my dialysis sessions.
Cannulate or canoodle is the process of getting stuck with a needle the size of a toothpick so the blood can be filtered by the dialysis machine. (Also called poked or stuck or jabbed)
Staff at El Milagro are usually identified by name and function, i.e. Jennifer the Dietician.
Notes includes my beginning weight in kilograms and my ending weight, since they measure the dialysis in body weight loss during treatment. My “dry weight” (perfect weight they aim for) is 71.5 Kg, or 157 lbs.
Moritz is my nephrologist, Dr. Charles Moritz, who is part owner of El Milagro and a partner in Austin Kidney Associates.
Comments are made by you, the reader, by clicking "comment" at the bottom of the post. To be published, your comments must be approved by me. Basically, I do not publish "get well" or acknowledgement comments, although you can write them to me for their curative purposes. I do publish comments with reflections about your personal experiences, your thoughtful responses to my ramblings, contributions or critiques about my writings, significant or thought-provoking ideas, or various haiku that my friend, Cecilia, writes. If you don't want your comment published, let me know and I will respect your wishes.

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El Milagro: Got in today at 11:30 am. Phyllis the Nurse is back from 9 days of vacation, seeming very up-beat and happy. Diane cannulated me and is still doing much better at sticking me. The woman who says "help" (see #11 in May) is right in front of me today. Her name is Sandra and she curls up in a little fetal-like ball in her chair, with her feet sticking out over the chair¹s arm. She usually puts her quilt over her head when she is saying "help". According to staff, she used to be just like all the regulars, but over the years she has sunken into this state. When the EMS folks come to pick her up today, one of them asks her how she is doing, and she says, as normal as can be, "Okay". Then, a few seconds later, it's another "help".

Today I am watching Tiger Woods getting 4 bogies in a row! That is very unusual and yet, by the end of the day, Tiger has come back and is in second place. Tiger¹s confidence and commitment to excellence is a model for the rest of us! When you screw up or something bad happens, you simply (I admit it's not so simple sometimes) shake off any negativity, walk to the next doorway, step through it, and again focus on doing your best. You can¹t live in the past and you can¹t predict the future. So, all you can really do is be in the present, live fully, do your best, and laugh a lot.

Yesterday, as a closing for our conference, John Irvin reminded us that Groucho Marx said, "A clown is like aspirin, only he works twice as fast." See more about John at www.johnirvin.com .

Notes: In at 72.7 Kg. and out at 70.9 Kg.
If you want to read a new article on the Good Samaritan beharior of giving kidneys to strangers, read:
CNN.com (June 5, 2006) Would you give your kidney to a stranger? The ethics and hazards surrounding living donors. Retrieved online August 25th from http://www.cnn.com/2006/HEALTH/06/01/living.donors/index.html

46) Sleep Session

August 24, 2006
Thursday

El Milagro: When I got here today I immediately noticed that Kim the Tech was back from having her baby (Kim was the first person to cannulated me when I started dialysis). Marilyn the Social Worker said they got my complete physical from the Transplant Clinic and I am all set to travel wherever I want. Carol cannulated me today and I almost immediately fell asleep. I must be very tired from being at a conference since Tuesday. I woke up at about 6:30 and as Diane was prepping me for de-cannulation, she reported that Dr. Moritz came by to see me but the staff wouldn’t let him wake me up. I replied, “Thanks, I guess”.

Today, in an over heard conversation I found out that each patient’s personal dialysizer is used about 50 times with careful cleaning and sanitizing between each use.

Notes: In at 74.2 Kg. and out at 71.7 Kg.

45) Adding Machines

August 22, 2006
Tuesday

El Milagro: Long conversation with Herman today about the new computers that I see between each Dialysis Machine. Herman reports that they are moving towards a paper-less system. Right now, each dialysis station has an associated clipboard with a piece of paper which is used to gather the patient’s data throughout their session. Staff write the beginning weight, BP, calculated weight loss for the session and then add info whenever they come by to check on the person. By the end of the session there is full piece of paper with lots of numbers and info on it. Then, staff have to type it all into their computer. With the new system, stage 1, the staff will data enter all the patient’s info directly into a computer by the station. By stage 2, the dialysis machine will talk directly to the computer and the staff writing or typing will be out of the equation.

Note: In at 72.7 Kg. and out at 71.1 Kg.
Today, before coming here, I gave a number of people at my conference this address, so we can expect more readers.

44) Of Urine and Tailgates

August 19, 2006
Saturday

Morning: Call to Herman; they are completely full today, so I have to come in at my regular time. I tell him I’ve got a party to go to and if there is any way to get me in early, it would be great. He says, “Everyone will be here. God forgive, if anyone has to go to the hospital is the only way you might get in early.” Well, we don’t want that. So I call back at 11:30 or so from the Bat Mitzvah services at the “J”, and Ron says I can come in at 2:30, half an hour early.

El Milagro: Debbie canoodled me today and we discussed if she had ever done it to me before. Debbie and Rosie are the techs who were so excited that I was going to come to the early shift, cause I was an easy patient. I think I’ve posted before that Debbie and Rosie are the ‘Fun Girls’; always laughing, joking, and generally making all the patients smile. Today, Debbie says she has been working since 3:30 am this morning, and then she said, “I don’t know if I can do a good job sticking you”, to which I reply, “Believe me; I’ll let you know if you aren’t doing a good job.” So, we are just yaking away about something and somehow get to a point where she says, “Good thing it’s not the old days. You know how doctors used to assess for diabetes? The patient would urinate in a cup and the doctor would smell or sometimes even taste the pee. If it smelled or tasted sweet, they would know the person had diabetes.” So I say, “Yuck! Where did you learn that?”. “In physiology class. Really.” By now I’m cannulated and I’m stuck visualizing Moritz sipping urine from a shot glass and saying, “Yup. You got a tiger by the tail, boy!” . (That’s the same thing he said to me when he first talked to me and Liz about my PKD.)

I read the new Time and watch Mythbusters* experiment with the old cartoon image of the gun exploding like a peeled banana when someone sticks their finger in the barrel. It’s a myth. Herman stops by to give me my second Hep B vacine in a series of three.

Even more important to most of us Texans, these guys showed that we can get better gas mileage in our pick-ups with the tailgate UP. That’s right guys: those of you who drive around with your tailgate down, thinking it gets you better mileage are WRONG and stupid! Adam and Jamie filled up two Ford F-100s and drove them at the same speed and the one with the tail gate UP went 30 miles further. They later showed with a model truck in a water tank that with the tailgate up, air cycles tightly in the bed and causes the major air stream to flow right over it. The airflow in a truck with the tailgate down catches and pushes down on the tailgate. To see this episode #43, entitled “Seasickness – Kill or Cure” watch Discovery Channel on September 20th.

MythBusters is described in Wikopedia as "Jackass meets Mr. Wizard."** As I’m watching, I wonder what kinds of myths there could be related to kidney disease or kidney transplants that Adam and Jamie might want to explore. Do polycsystic kidneys really get as big as basketballs? Does a woman with a transplanted kidney from a man drink more beer? Do people who get kidney transplants form 3rd world countries get sympathy pains? These are myths I just dreamed up, but maybe there are some real myths out there. What would they be?

So, I get done with my dialysis at about 6:30 and shoot out to The Salt Lick*** in Driftwood for Alena’s Bat Mitzvah party. Welcome to the adult world, Alena! And, that’s the way it is today.

Notes: In at 73.9 Kg. and out at 71.2 Kg.
* MythBusters Fan Site (2006) Retrieved online August 20th from http://dsc.discovery.com/fansites/mythbusters/mythbusters.html
** MythBusters (2006) Wikopedia: The free encyclopedia. Retrieved online August 20th from http://en.wikipedia.org/wiki/MythBusters
*** The Salt Lick (2006) Retrieved online August 20th from http://www.saltlickbbq.com/

43) Phosphorous High

August 17, 2006
Thursday

El Milagro: Carol cannulated me again today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I finished my dad’s new book and am really happy he wrote it. I am reminded of a time, some years before my mom died, when, for her birthday or some other gift day, I (or my brother and I) gave her one of those chart-your-life books where one fills in the blanks about their life; their early memories, favorites, etc. My mom was less than thrilled about the gift (my hallucination) and made some sort of verbal response like, “I am way too young to be thinking about what to write for my legacy”. I never saw or heard anything about that gift afterwards. So, a special thanks goes out to my dad for going way beyond the confines of that little book we gave my mom.

And as I finish his book, and I am now getting used to my practice writing on an almost daily basic, I am becoming more and more committed to the idea of adding my own edition to the two Nowicki books that already exist. I picture the day when there are three volumes sitting on the shelf: Kay: Letters & Memories, Kay and John, and something like, Jack, bound in the same library green hard back and basically the same size, typeface, etc. I am sure it would take me at least 6 years to get mine done too. There would be less pictures but there would be way more text to filter through to set up a chronological + relational story. Just dreaming now… we’ll see if I can materialize it.

Jennifer the Dietician rolls up to talk to me about my most recent blood work: my phosphorous is higher than ever before! In the last month and a half it has gone from 6.8 to 7.0 to 8.2! A good level of phosphorous for me would be 3.5 to 5.5. Clearly, the enchilada boycott is NOT working! Jennifer thinks that maybe my parathyroid gland is getting the wrong message and is causing “too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy”* So, she is having Ron order another binder to add: Phoslo. I will take 3 of these with the 5 Renagel at each meal. In ending, she encourages me to give myself an affirmation about my bones: something like saying to myself, "My bones are healthy". I would rather say, "My kidneys are disolving their cysts.", but she has a good point.

Amanda (see Post #4) is here today and I said “hi” and gave her my blog address. She said she was going to write one but somehow never did, so I hope she enjoys mine. She is still on MWF, but came in today because she had to work all day yesterday and missed her Wednesday session.

Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Phosphorous and chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478

42) Another Day Another Dialysis

August 15, 2006
Tuesday

El Milagro: Carol cannulated me today: another smooth, professional stick. I am reviewing an article for the Children in Schools Journal: a study of protective factors for Hispanic youth in schools. It is well written and shows some important variables to consider in increasing youth’s resiliency so I am suggesting they accept it for publication.

Also am continuing to read my dad’s book and marveling at the job he did in producing it. Jennifer the Dietician comes up to get me to sign off on our plan and I report that I am still enchilada-free for the time being. She says, “I hope that’s the ticket to your decrease in phosphorus and we will see the results this Thursday.”

I’m thinking that right now that Johnny is in Oakland waiting to board his flight to Honolulu. I imagine him walking around the airport looking for the right gate and thinking about what he can eat that is cheap. He arrives in Hawaii at 8 pm their time; 1 am our time.

Notes: In at 74.3 Kg. and out at 72.1 Kg.

41) The Book Report

August 12, 2006
Saturday

On Friday afternoon my friend Carol at Work asked about Thursday’s dialysis; saying, “Were you canoodled?” and I am thinking ‘canoodled’ is an appropriate alternative word for cannulate.

Morning: I finished Fluke yesterday evening. There was some serendipity in the finishing. The main character is taken into a living organism 650 feet deep in the southern ocean off the coast of Chile and describes the interior similarly to my description of the inside of my right kidney in Post # 38 (August). His description is more writerly: “…a vibrant red chamber that was pulsing with light and glistening with moisture as the walls appeared to breathe. Now this looked like a living thing -- the inside of a living thing.” Of course, as I was reading along, I was thinking of the comparison with my interior kidney views, adding some of the visuals to my own visual characterizations.

El Milagro: Matt canoodled me today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I am reading my dad’s new book, John & Kay. My dad is an 83 year old somewhat cantankerous retired military officer who has published two books for our family. The new book, written over the last three** years, is about his recollections of his “chronological” life story from his childhood years through his retirement. Much of it tracks his military career during the occupation of Germany after WW II, his post-war military assignments related to guided missile and RADAR development, and the connected, noteworthy events in our family history. As I read his recollections, I am amazed at my dad’s memory for dates, places, and events. I wonder, did he make notes throughout his life, or does he just have an amazingly organized file cabinet?

Also, as I read the book, it jogs my memory of various scenes, conversations and stories told by my mom, and I am even learning a few things about my parents’ lives that I didn’t formerly know. And, as I read along, there are times I wonder about the story behind the story. The details are there but I want to know what they were thinking and feeling about the events in their lives? What was the experience like? What music was playing when they were driving from Detroit to Lawrence? I want the scene developed to include the mood and the hyperbole. It seems that in my father’s generation (The Greatest Generation) the 'story' was about “just the facts Ma’am”; we went here and then there and then there. This happened and then that happened. It was a historic generation and chronological dates and places were the important milestones. In my generation, the 'story' became all about the experience. Rock and roll, the civil rights movement, the anti-war movement, and Woodstock were experiences. The dates became less important. When was 'Kent State'? We don't know the exact date but we all know the words to the CSN&Y song "Ohio". The Beatles’ songs are timeless (actually many of the R&R songs from the late 50’s through the 70’s have become timeless; only the music historians know when they were recorded, but every generation since knows the songs… like “summertime blues”). In the Experience Generation (also known as the psychedelic generation) how events were connected, or how people changed in response to their experience was the measure of time. So, as I read my dad’s book, from within my generation, I am trying to read between the lines to find out what the experience of occupying a foreign country was, and what was the experience of his early marriage, and what did they think (their beliefs) about parenting? And then, in the middle of it all, there are places where he does discuss a bit more about his experience, mostly saying the event was "important", "sad", or "happy". Liz points out to me that perhaps my dad purposefully wrote this history without including events or story lines that were disagreeable.

We’ve gone through a few more generations and now my father’s oldest grandkids are in what they call Generation Y.* Gen Y is the wired generation and it functions on information bits (multiple modern media choices). Both Gen X and Gen Y live in the present and generally have little interest in slowly developing stories or histories. In my experience, having three of them as children, they have no interest in old movies that have slowly developing story lines. They get bored and leave to play computer games or communicate with their peers online or via cell phone. They want action and fast moving drama and they want it NOW. They are used to multi-tasking, so they may skip over uninteresting data to find exactly what they are looking for. I believe that the Greatest Generation looks aghast at the Experience Generation as we look aghast at Generation Why. I am proud that my dad published a book about our family and maybe it is now up to me to write one for the family from my generations world view. That’s the way I see it.


Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Wikepedia (2006) “Generation Y” retrieved online August 11th from http://en.wikipedia.org/wiki/Generation_Y
**"It was three years, not six years." Corrected 9/5/06, based on a phone call from my Dad; who asked where I got the figure of 6 years. I replied that I just figured he started this book after he finished the first one. Now the post is correct.

40) Ho-hum in da Dol-drum

August 10, 2006
Thursday

El Milagro: Diane cannulated me today – okay job. She has mentioned several times that my fistula is getting easier to work with as it 'matures'. I wonder again if it is me or her that is maturing. Today is basically a b--o--r--i--n--g session. Read my book, watched the news, and slept. I am still committed to writing a post every time, to fully document the experience of being here. If it is boring for me, I hope it is boring for you, dear reader.

I observe the sunglasses Hollywood (important) lady visit with her sister; a younger version with the same glasses. There is dedication and loyalty in those who sit with their relatives here. Even if they wear smart scarves and shades.

My book, Fluke, is really getting exciting... and I will finish it before John leaves next Wednesday! So it goes.

Notes: In at 73.3 Kg. and out at 71.6 Kg.

39) In Which Jack Doesn't Meet Jill

August 8, 2006
Tuesday

El Milagro: Carol cannulated me today. She is an all-business tech with her hair pulled back into a pony tail and she rushes around doing her job as if the faster she works the quicker the time will pass. Not too much small talk but friendly enough and seemingly very experienced and professional.

After I am cannulated and ten pages into my reading, the new, bookish, talky-phone woman arrives and is seated right beside me to the right. I am hearing little tidbits about her as Phyllis does her introduction talk and asks if she has any questions. I learn her name is Jill. She has a 14 year old daughter. Jill has lots of friends, extrapolating from the number of phone calls she gets and makes. Maybe it’s just her daughter calling her every few minutes. I am waiting to introduce myself to her but every time I get ready to, she gets on the phone.

So, today I just read on my book, watch the news, and take a snooze.

Notes: In at 74.4 Kg. and out at 71.6 Kg.

38) Three Day Report

August 3, 2006
Thursday

El Milagro: Diane cannulated me today; again good. Liz met with Jennifer the Dietician today about our eating habits and how we can better rid ourselves of the demon phosphorous. Then Liz came and reported to me while I was on the machine… the upshot being that Jennifer the Dietician thinks our food behaviors at home are good and that maybe they just need to give me another kind of binder or something. She told Liz that whenever a person gets their phosphorous under control, they don’t usually have further problems with it, so that is a motivation to keep up my attempts to get it out of my diet.

Notes: (Forgot to check weights).

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August 4, 2006
Friday:

Kerrville: Kim and I are taking Anita Jung* to do a workshop on youth who self-mutilate. Anita mixes data and ideas with participatory exercises in her workshops. So, at some point Anita leads this guided imagery exercise that I participate in… one of those “going to a place that’s relaxing” trance-like thingies. Well, I decide that it is more important for me to have a conversation with my cystic kidneys than to go to a grassy riverbank on the shore of the south fork Guadalupe River, so I transport myself right into my kidney to have a heart-to-heart with my cysts. I pop myself into the middle of my right kidney, imagining it like a large cavern having a glistening bloppy red roof with cysts poking out of the ceiling and walls, and laying about on the floor where I’m sitting (in an easy chair upholstered blue grey with 2 inch silver embroidered fleur-de-lis. I picture the cysts like those fuzzy purplish burrs we see around Central Texas…. like eryngo without the spiny leaves. I’m sitting there comfortably in the over-stuffed easy chair saying:

“Hello cysties. In the last few years I’ve been very angry and frustrated about your existence in my kidneys. You’re making me fat around the middle; although I’ve promised myself I’ll never buy a pair of Levi 501’s larger than a 34” waist. So, you’ll just have to get squeezed when you multiply. I wonder how it is you decided to grow here and what the Hell you have against me! Is it all about my having a ‘sense of shame, failure, disappointment, and being over-critical’ as Louise Hay** would suggest? Now I’m sitting here in my easy chair, ready to have a heart-to-heart with you. I really want to know what the deal is. I am willing to accept your presence and willing to assume there is a positive intention in your behavior, if you will only describe to me what it could possibly be. I’m on a list to have your house replaced, but I want you to know it’s nothing personal. It’s just that I want to go on living and do it without the constraint of being on dialysis forever. I want to look forward to another sailing trip to the Caribbean with my family and I really can’t see doing that without a new kidney. So, I’d like you to think it over and see if there is a way for you to be part of the solution instead of being the problem. If there is something I can do to ‘heal’ you, please give me some sort of comprehensible sign and I’ll get right on to doing whatever I have to do. Thanks for listening to my diatribes and I hope you don’t take them too personally.”

So, that is basically the conversation I had with the cysts. Anita calls us out of our 'relaxing' trance places and I open my eyes to the bright room. I don’t recall any answers coming forth from the cysts; but logically, why would they answer? They’ve been cursed and diss’d by me for years now so it is really no wonder they are incommunicado. In my mind, I am just starting to build some sort of relationship with them so it may be several sessions before they open up. That’s the way it seems to me.

Notes: *See Anita Jung’s Home of Therapeutic Change (nd) retrieved online June 15, 2006 at http://www.angelfire.com/psy/anita_jung/
**Hay, Louise L. (1987) You can heal your life. London: Hay House UK, Ltd. (LH & Kidneys online at: https://howhealthworks.com/nacho_newsletters/nacho_4.htm )

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August 5, 2006
Saturday

El Milagro: Herman cannulated me today and I recalled his slickness at sticking people, since he hasn’t stuck me in weeks. He indicated keeping track of my blog and we laughed about certain entries. Today again, the woman who says “help” was in the room, quietly saying her 'helps' throughout most of my time on the machine. The Sunglassed Important Lady (see Post #34) is here and some younger preppy relatives visit her, staying a few minutes to 'do their time'. And, the new Bookish Talky-Phone Woman (see Post #35) is adjusting to being here I hallucinate: she is now watching TV more than reading. I read my new book, Fluke* for most of the session; trying to finish it before I give it to my son John to take to Hawaii on August 15th.

I also spend some time visualizing how I want to plant the cactus we bought this morning... they'll go on the south side of the garage that I’ve cleared for our cactus garden.

Notes: In at 74.3 Kg. and out at 71.7 Kg.
*Moore, Christopher (2004) Fluke: Or, I know why the winged whale sings. New York: Harper Collins Publishers, Inc. (See the author’s website online: http://www.chrismoore.com/bookpage.asp?PB_ISBN=006056668X )

37) Trout Sleeping in America

August 1, 2006
Tuesday

El Milagro: Eloy cannulated me today. I’m still wrapped up in Paris Trout and read furiously until time for the news. Today I’m sitting next to the lady who says “Help!” from under a blanket (see Post # 11 in May). But now I have gotten used to her sporadic calls and they hardly interrupt my thoughts. However, they seem disturbing to the new woman across the way. She can’t see the 'lady who says “help”' (like the "knights who say "Ni"*) and so she is looking around to see who is getting attention. Since the lady who says “help” doesn’t get any attention, the new woman just keeps looking around.

At 5:30 I started watching the news and almost immediately fell asleep. Either the news put me to sleep or I was really tired today…. don’t know which cause I missed the news. Sleeping at the center is getting easier and I have taught myself to do it without moving my left arm, which is attached to my dialysis machine.

Notes: In at 73.6 Kg, and out at 72.8 Kg.
* Knights who say Ni (nd) Retrieved August 2 online from Wikopedia at http://en.wikipedia.org/wiki/Knights_who_say_Ni
The "new mean guy"s name is Matt.

36) Bullet Time Novel

July 29, 2006
Saturday

El Milagro: After calling Herman at 9 and calling back at noon and talking to Ron the Nurse; I am able to start my session at 12:30 p.m. today. This is early. But, no matter what time I start and finish, now that watching TV soccer is over, it seems like 4 hours of dialysis + cannulation and de-cannulation time (30-40 minutes) + drive time (30 minutes round trip) pretty much bites into a Saturday afternoon. I have some time to work in the yard and around the house in the morning, and then time for whatever in the evening and that’s it.

Diana cannulated me again today and again did a good job. She mentioned that my fistula has matured really well because it is so easy to cannulate now. I’m thinking maybe she went to a class or has just practiced a lot since she used to always mess up on me. Clearly this question exists in a social constructionist (post-modern) frame… we are both right from our own perspectives.

Luckily, my four hours passed without incident and seemed to rush along the time track like one of those Japanese bullet trains*. I started reading Paris Trout, by Pete Dexter and could’ve been on a Japanese bullet train for all I knew. This novel, which I heard about on NPR, and which my son John gave me for my birthday, is like a another version of To Kill a Mockingbird with more of a psychological bent. According to the Chicago Tribune, “…(It) doesn’t have any brakes. Hang on, because you won’t be able to stop until the finish.” I was completely sucked in to this novel…. so much so that I was surprised when one of the techies came up and said “You’ve got two more minutes”. We coulda been arriving in Osaka for all I knew. Train time sayonara.

Notes: In at 73.1 Kg, and out at 71.0 Kg.
*BULLET Trains (Shinkansen) (n.d.) Retrieved July 29 online from http://www.geocities.com/tokyo/Island/2589/nmt/bullet.html

35) Moritz Locutus Returns

July 27
Thursday

El Milagro: The 'new mean guy' (see Post # 21 in June) cannulated me today. He doesn't seem so mean anymore: now its more like he is somewhat uncomfortable in his new work environment and trying to overcompensate (or trying to follow the model set by other staff) by making small talk with everyone. I can tell by observation though that he is still not in the 'in group', staff-wise. I still don't know his name, although he is from Tennessee and has been sticking people for four years there before moving to Austin to stick people.

Sometime around 5 pm Dr. Moritz, Nurse Ron, and Jennifer the Dietician come by, surprising me by slipping into my visual field from the left. Usually I know when they are moving about the place checking in on people, but this time they somehow completely snuck up on me.

Dr. Moritz is wearing a muted Hawaiin shirt, khakis, and, in his ear the implanted phone bug. He looks a little like a heavier version of Captain Picard (as asimilated by the BORG: stardate 43989.1), but on vacation. I wonder if he is listening to instructions from the collective while asking Nurse Ron how I am doing. Nurse Ron reports I am doing great, and Jennifer the dietician adds that my phosphorus is still high. I ask, "Is this with the new lab work?" and she replys that it is, and adds to Moritz that I have completely cut out Mexican food.... Moritz Locutus* gets a question from the collective in his ear and vocals, "beans?"; to which 'J of D' and I both nod 'Yes!'. J of D asks if they should add a new med, and Moritz Locutus wants data: "How many Renagel is he taking?" I reply, "Five at dinner, four at lunch, and 3 with snacks." Moritz Locutus humanity shows through briefly as he arches his eyebrows in surprise and mumbles something to himself. Then the collective whispers some message in his ear and he turn slightly and moves on to the next person. J of D shrugs and tells me she'll be back to report on what the collective decides about my meds.

Sometime later after I've had a little snooze, all the machines begin beeping furiously and Herman and Eloy are rushing around and the other staff are going around pushing various buttons on the machines to stop their beeping. It is a chorus of beeps - on again and off again, like mechanical cricket chirps in the night. Herman announces that the water supply got too low causing all the machines to signal "PROBLEM". I overhear that the staff should set all the machines to (something) and wait until the water level gets back to normal.

There is another new person today; a female, youngish, strawberry blonde, with a hardback novel, grass green blanket, and cell phone. She is ushered in to her chair by the social worker and she sits there waiting to be cannulated for the first time, looking around kind of nervously (I hallucinate). Ron the Nurse looks closely at her wrist, indicating to me she has a fistula, and then as they hook her up from a AV Graft I realize her fistula mustn't be mature yet. I remember how I felt the first time, and now realize why Amanda said to me way back then; "Sorry to meet you this way."

Notes: In at 73.1 Kg, and out at 71.0 Kg.
*Jean-Luc Picard (2006) in Wikipedia: The free encyclopedia. Retrieved online July 27, 2006 from http://en.wikipedia.org/wiki/Jean-Luc_Picard

34) Fish Phosphorus Report

July 25, 2006
Tuesday

El Milagro: As I’m driving over here today, I feel as if I’m coming off vacation. I haven’t been here since Saturday… and that’s two days! It makes me chuckle to think that a two-day break from dialysis gives me some sense of a break from the tedium of going every other day. But when I get done on Saturday I usually think, “That’s done and I don’t have to come back for two whole days! Yippee!”

Today I got here right on time and had to wait for over 30 minutes for a chair. They’re in one of their rushing around modes today. Finally I got my chair and Gladys cannulated me. The place was full and it seems like there are new people everywhere. One woman, who is over-dressed for dialysis in my opinion, and wears shades throughout, was sitting by me today. I hallucinate that she must be someone important or maybe she is a doctor. She demands staff to come to give her cups of ice, to adjust her chair, and even to adjust her machine. She just yells out, “Eloy. I need…… “. At one point I notice her reaching over and doing some adjustment to her machine herself. That’s interesting! Also, there’s a new guy who looks a little like a younger Kirk Douglas as he looked in the movie Lonely are the Brave (1962). He has a AV Graft in his upper chest. “The AV graft is … an under the skin connection of an artery and vein (in which) man-made tubing connects the artery and vein. The soft, plastic-like tube is about one-half inch in diameter and is made from a type of Teflon® or Gore-Tex® material.”*

Jennifer the dietician rolled by to give me the fish report I had asked her for last week. I had forgotten, so when she rolled up and said “I bet you didn’t think I’d remember.” I had no idea what she was talking about. So, the Fish Phosphorus Report is.... salmon, trout, and scallops are high phosphorus; snapper, catfish, and flounder are medium; and halibut, cod, tuna (canned in water) and oysters are low.

I read most of the new Networker on 21st century teens (article by Ron Taffel that pretty much tracks his last book and an interesting adult look at MySpace.com by Mary Sykes Wylie) and watched The Daily Show with John Stewart.

Notes: In at 74.7 Kg, and out at 71.6 Kg.
* Vascular access; your lifeline to hemodialysis. (2005) Retrieved July 25 online from the Davita website at http://www.davita.com/articles/dialysis/index.shtml?id=180

33) Cramping & Jack's Hallucinations

July 22, 2006
Saturday

Morning: Called and talked to Herman, who said they had an opening at 1:30 that I could use. Johnny was here for the last few days (compulsory time off from the stress and intensity of Camp C.A.M.P.*) so he went over my last blood work report and wondered how and why my protein count could be down. We also discussed his financial situation for the fall semester in Hawaii** and looked over his financial aid apps. Although he is unclear about the figures to use as his annual income, John appears confident that he will have enough money for the year in Hawaii, I hallucinate.

El Milagro: Diane cannulated me today and again did a good job. Rosie stopped by and said, “Hi stranger.”; I guess referring to my being in Dallas last week. As she was moving about the center working she kept glancing at me and giving me a little ‘knowing’ smile. But I have to admit, “I know nothing” so these little cutesy eye glances just confused me. I wondered if she had read the blog, or if she was just being friendly, or what it was all about. Rosie is always kind, attentive, and chummy so perhaps I am hallucinating the cutesy eyes thing (I am sure it is not flirtatious).

By “hallucination” I mean thoughts that I have that have no basis in objective empirical observation or verification from the person observed. In family counseling, we challenge students to identify ‘hallucinations’ they are making about their clients; such as thinking the ‘mother is acting this way because of her past abuse’, or ‘the child is angry at their parent and therefore acting out in school’. These are hallucinations because they are based on the counselor’s ideas of how the world works, not on exploration of the client’s thought processes or rationales for behavior. We ask students to listen to the client's story and ask about their ideas about how things got the way they are and their theory of how things might best be changed. Any time we think we know the answer without exploring the other person’s world view, we are hallucinating.

Today there is an older man in the corner chair who is moaning (“Auhhhhhaaaaahhuh” is close to the sound). The staff generally are ignoring him: I notice Herman glance at another staff as the man moans and arch his eyebrows slightly. I hallucinate that this means “just let him moan”. There are two of the man’s relatives (maybe they’re friends) with him and the female occasionally attends to him in his moaning. It may be that part of the moaning is in response to cramping in his legs (I hallucinate). It seems that the female relative is rubbing his legs at times. Staff does go over and attend to the man on their regular schedule of stopping by every 15 minutes or so to mark his chart with numbers from the machine. Later he moaned in a major way when staff picked him up out of the dialysis chair and placed his in a wheelchair to leave.

Today I watch a Hallmark movie about ranching in the hill country in Liberty Hill. The landscape doesn’t look like Liberty Hill to me; much more hilly than I remember LH to be. I hallucinate that it is really around Fredricksburg or Johnson City, drift off for a few naps, and think about the visit with Johnny. I look at the clock on the wall at 3:30 and imagine him driving to San Antonio with Helen, who came up to Austin from SA just to pick him up. He is ‘Hombre Importante’ at camp and can find folks to drive for an hour to get him. Also, he’s her boss. They are cruising down the freeway listening to modern rock music and driving too fast to get to the San Antonio all night party that will end when they all arrive back at camp on Sunday morning…… I hallucinate.

Muscle Cramping: “Muscle cramping of the hands, feet, and legs is fairly common on hemodialysis. The cause of muscle cramping is unknown. However, three conditions that seem to increase cramping are: 1) hypotension (low blood pressure); 2) the patient being below dry weight; and 3) use of low sodium dialysis solution.

“Muscle cramps are more commonly associated with low blood pressure. However, some cramping continues even after a normal blood pressure is obtained. In fact, muscle cramping can occur even without a fall in blood pressure. Muscle cramps also can occur when you are below your dry weight. (As the dialysis machine filters fluids out of the system, the patient can fall below their ‘dry weight’ and then muscle cramping can begin). The severe muscle cramping experienced near the end of the dialysis treatment and persisting for a time after dialysis often is due to dehydration."***

Notes: In at 73.5 Kg, and out at 72.7 Kg.
* Children’s Association for Maximum Potential: C.A.M.P. (2006): retrieved May 15 online at
http://www.serve.com/campcamp/
** University of Hawaii at Manoa: retrieved July 22 online at http://www.hawaii.edu/marine_biology/default.htm
*** Problems associated with dialysis (nd) Kidney Patient News: retrieved July 23 online at http://www.kidneypatientnews.org/kpt7.html

32) Enchilada Boycott Continues

July 20, 2006
Thursday

El Milagro: Diane cannulated me today and did a good job. I was a bit apprehensive since the last few times she has had to call someone over to adjust her stick. Jennifer the dietician scooted by in her rolling chair (staff all appear to like to scoot around the slick linoleum floors on secretary chairs or short stools with wheels on them) and I shared what I had told Laura about my non-enchilada days. Turns out Laura is not Jennifer’s junior: they are equals and Laura has been here much longer than Jennifer. Jennifer just seems to be the head honcho because she is much more gregarious than Laura. Jennifer reported that since I’m not actually getting blood work until next Tuesday (Last Tuesday was for a blood count), I must continue my enchilada, cheese, bean boycott. I agreed somewhat reluctantly. We also talked about why my protein score is going down and she didn’t really have a good idea about that. I did give her an assignment to find out the phosphorus count on the various kinds of fish we can eat (salmon, trout, redfish, snapper, and maybe catfish).

Later Ron the nurse stopped by and gave me the first of a three-series Hepatitis C shot. He had noticed in my record that I don’t have that and said it is a good idea around here to over-protect yourself. “What’s one more shot?” I said. It was an easy session today: watched TV and read the Networker.

Notes: In at 73.6 Kg, and out at 72.1 Kg.

31) Bionic Man Escapes to the 'High Country'

July 18, 2006
Tuesday

El Milagro: Feeling back at home today. Gladys cannulated me without much pain. Staff asked how Dallas was a I explained that it was smaller, fancier, and that I had to be dialysised in a bed. Eloy said, " Bed?" and I replied that they do dialysis 24/7 and have night-time patients who sleep there. I reported that I didn’t like it as much as here. Ron the nurse told me that Oscar (the nurse in Dallas) had called him on Saturday, saying they needed my TB results faxed up there because the doctor doesn't want to dialysize me without it. He rushed around looking for it, knowing they had done it. Finally found it and faxed it. According to Ron everything had been faxed up before I went… so there is another example of how these places get a bit mixed up.

Laura, Jennifer’s junior dietician, stopped by to report on my last blood work. She is a young, attractive, brunette with a perky, smiley face, who intends to make the patient happy. On my newest report all was good except protein is dropping (from 3.8 to 3.5) and she asked if I was eating a lot of protein. Told her about more steaks and fish and she suggested I eat even more protein. Also, phosphorus is still too high but is dropping again (from 7.2 to 6.8). I reported that I had kept my promise with Jennifer and had no enchiladas, beans, or cheese for the whole week. Of course that won’t show in the blood work until next Tuesday. Somehow we got into talking about chilies and how I refuse to stop eating them, and Laura said that’s okay cause they are only a problem for potassium, and my potassium looks great. It is so nice to have lower potassium. In sharing that she understood my love of chile, she said, “I’m from El Paso” and I replied, “ME TOO ”. “Well, really Fabens" she added quickly, to which I said, “Wow. I worked at Fabens Ice Co., delivering crystal clear ice to bars all over the lower valley!" OH NO! We have the 'when old El Pasoans meet' thing going on again (see Post #25); except that she and I talked more about crops in the upper versus lower valleys. Her dad grows pistachios on their land and I talked about living up in Anthony in the middle of cotton and onion fields. Turns out she went to high school with Herman, but does that mean anything else. Like, how in the world did they both end up here at El Milagro? I will have to pay attention.

Wednesday Afternoon: Feeling blah this afternoon. Maybe nauseous or maybe just worn out from losing almost 7 pounds in dialysis last night. The blahs came on shortly after reading an email from a friend who said, "... sorry to hear you're having medical issues." That sounds so sicky to me. I don't have 'medical issues', I have a broken kidney. I prefer to use the analogy of 'broken' because it suggests repair whereas 'issues' seems like something I should go to therapy about.

So I came home to rest. Two thoughts hit me today. 1) This dialysis stuff is getting old. I mean I realize it is an important part of living for me right now…. but I am getting tired of having this kidney condition make me concentrate so much on my diet, taking meds, keeping a schedule, and all else. Usually I am very UP about it and facing it like an adventure, but today that seemed like a depressing chore. I shudder to think I’m thinking its getting old after only three and a half months…. this could go on for years. Maybe the honeymoon is over. (Maybe I do have issues).

And, 2) I’m realizing I’m a bionic man. When organs have to be enhanced or replaced by mechanical means that is the definition of bionics*. So, when hooked up to a dialysis machine, I am a bionic person! That sounds cool, but it also means that I need electricity, or a Honda generator to do dialysis. Think what would happen if N. Korea nukes Austin. I would be up a creek without a kilowatt. There’s this TV commercial about a new show called Jericho I think: and this kid is standing on top of a house seeing a mushroom cloud in the distance… and then, of course all the power goes out. Used to be that when that happened I thought I’d jump in my truck and head up to the 'high country' (somewhere not to be named here so everyone else doesn’t go there). But now what’ll I do? I guess I could zip on over to the dialysis center; break in and take a dialysis machine; throw it in the back of the truck; zoom by Academy and get a Honda generator (solar powered if they have ‘em by then), and then head out to the 'high country'. When you’re a bionic person escape gets all complicated.

Or, rather than a nuclear attack, think what would happen if we couldn’t do more stem cell research. That would be terrible for people waiting for scientists to invent a way to grow kidneys (and many other stem cell miracles). Oh yeah; as of today, we can't. Scientists and Patients need to UNITE and let Mr. Bush know how far back in history his beliefs are taking us (Funny how he is all for killing people in the electric chair but protecting them before their personhood exists). Many American science types who want to do research in these areas are now going to Europe and other countries to do their work. Even Republican, Orrin Hatch, said "The only veto he has been willing to exercise up to this particular point is a veto against the most promising research ever devised to man. I think that's a terrible mistake."** The senator said stem-cell research could lead to cures for diseases such as cancer and diabetes, as well as Parkinson's and Alzheimer's Diseases. Hatch continued that while he supports Bush's desire for more adoptions of frozen embryos, "7,000 to 20,000 of them are destroyed each year. How can you allow 7,000 to 20,000 of these spare embryos to be destroyed a year, yet consider it murder to use them for research to benefit mankind? Either way, they are being destroyed." Of course, this debate is a whole nuther story. Don’t get me started!

And that’s the way I see it.

Notes: In at 75.1 Kg, and out at 72.2 Kg.

*Bionics (n.d.) retrieved online from Reference.Com at http://www.reference.com/browse/wiki/Bionics Their source is Wikipedia, the free encyclopedia © 2001-2006 Wikipedia contributors (Disclaimer)

**Davidson, L. Bush's veto power nips US funds for stem-cell research. Retrieved online July 20th from Deseretnews.com at http://deseretnews.com/dn/view/0,1249,640196152,00.html

30) Saturday Dialysis in Dallas

July 15, 2006
Saturday

North Dallas Dialysis Center: Today Oscar, the Hispanic charge nurse, smoothly cannulated me. Oscar is originally from the valley (McAllen) and moved to Dallas 14 years ago after a divorce and a visit to his brother up here. I mentioned that I had a friend from the valley (Cruz) who hated Arlington when we went to graduate school, because the cultural shift was too radical; to which Oscar said "he should've lived in Garland, Mesquite, Oak Cliff, or west Dallas. He would've found lots of us around those places."

There was one brand new patient there today: a youngish Asian guy with a Hawaiin shirt and bright yellow running shorts. It was like I was observing myself four months ago. He looked a bit apprehensive and had lots of questions for the techs and Oscar. The reason I mention this is that at the end of the session, after they de-cannulated him, as he was 'holding' gauze pads over the needle holes, I could tell he was pushing the pads tightly into his arm. The techs let you sit there, 'holding' for about ten minutes before they return to tape you up. And clearly they didn't tell him the 'holding' tip: start by holding the gauze very tightly and then loosen up the pressure as the time goes by so that by the end you are lightly holding. So, after he was taped and ready to walk out, he yelled out, "I'm bleeding!" and had to sit back down and start the whole process over. When you hold tightly for the whole time, you don't allow the wound to begin to clot, so when you let up on the pressure, it starts bleeding again.

Speaking of bleeding, I was able to find and watch the whole of the movie Carrie (1976, Brian de Palma: based on Stephen King's first novel), which I hadn't seen in probably 30 years. I had forgotten that Amy Irving, John Travolta, and Piper Laurie were in it. Also, I recognized William Katt (Carrie's date) who played Paul Drake in the later Perry Mason TV movie series, along with his mother Barbara Hale (Della Street). So, all that made a re-watch of Carrie worthwhile.

At the beginning of the session, I read my Alex Delaware book for awhile, then watched the news.

As I left the center at the end of my session, staff said I could return anytime and we said our goodbyes and I shouted out my ending weight to the nurse. Thus ends my adventure in Dallas Dialysis.

Notes: In at 74.9 and out at 72.1 Kgs.

29) Stranger in North Dallas Land

July 13, 2006
Thursday

North Dallas Dialysis Center: I am a visitor in a foreign dialysis center, if you can consider N. Dallas a foreign land (and that's another story). I arrive right on time at 4:00 pm. This place looks more like a medical clinic, with a well-furnished waiting room, a glassed-in receptionist, and a long hallway leading back to the "treatment room". A tech comes out and gives me 5 releases to sign and stands their impatiently while I try to read a little bit about what I'm signing.... basically that I'm on my own legally if anything were to happen in their building.

I get called to the back and led to a bed after I weigh in. A bed? I try to figure out how to approach a bed... do I sit on the edge, lie down, take off my shoes? What is the proper bed-patient behavior. I decide to make my self comfortable so I slip off my sandals and jump into the middle of the bed, causing it to bounce a few times. An Asian guy named Terry comes over to cannulate me. He asks me to stand for my first BP and I stand on the floor barefoot, saying at my center they say not to do this... and he replies that it is not proper here either, although he promises the floor is quite clean. He makes conversation (Where you from? Where you staying? OH! Rich people live there. How many chairs at your center? How long you coming here? ETC) while he smoothly cannulates me. A difference here is that he runs the tubing from my fistula on my left arm, accross my chest, to the machine on the right of the bed. So the whole time I am conscious of these warm tubes laying accross me pulsing gently.

This place is a lot smaller than my center in Austin. There are about 10 chairs and 5 or 6 beds. Terry explains that they operate 24/7 and have overnighters who receive long dialysis as they sleep here. He mentions that overnight dialysis is twice as slow and better for some patients.

Later, Erleen, a tall, large African American woman stops by to introduce herself and make small talk for awhile. None of the other staff, except an Asian nurse at the end, say anything, introduce themselves, or pay much attention to me. I do hear that there are two other 'visitors' in the place tonight. I settle down to reading my Alex novel and read until the news at 5:30. The TVs here swing around from behind you and settle right in front of your face, like Max in The Navigator. I had to lower the back part of my bed to get some distance from the TV. Sometime during the local news I drift off for a nap and wake up at 8 pm.

By 8:30 Erleen is de-cannulating me and my first out-of-town dialysis session is about to be over.

Notes: In at74.3 Kg. and out at 71.8 Kg.

28) The Saturday Evening Post

July 8, 2006
Saturday

El Milagro: I get a chair at 1:00 pm. Jo comes over to set me up in the corner chair and asks if I¹ll watch the game tomorrow. She too is for Italia and we share our excitement about the upcoming match. Then Herman comes to cannulate me and as he is doing that Connie comes up and says, "I really enjoy your blog." In front of Debbie, Herman, and Jo, who all show some curiosity about it. Debbie wonders if I have a My Space place too? to which I respond, "Nah. I¹m way to old for that. Just a blog." Herman asks what its about, and I say, "Its about my experiences on dialysis.... here." And he says he¹ll check it out. I tell him he can get to it simply by typing 'quotes Jack¹s kidney adventure, end quotes¹ on Google and it should come up.

I¹m in the southeast corner today, where I can see the whole place and everything that goes on. The room is completely full today. Herman says that even though they are now completely full on all shifts, it is still a good idea for me to call on Saturdays cause you can never tell what¹ll come open.

Today I am reading the new Alex Delaware novel, Gone! Whenever a new Delaware novel comes out I put everything down and read it so fast that it is basically all I do until I¹m done. Then I have that depressed feeling you get when you¹ve finished a book that you wanted to keep reading: it¹s over too fast. I was immersed in it and it was my novel reality. That¹s the way it used to be. In the last few years though, I¹ve learned to pace myself on Alex. I no longer pick it up and read it 24-7 until I¹m done. And I think that Kellerman has changed his writing too, because I don¹t think the books are as grabbing as they used to be. Actually, some people say they are all the same now. Nowadays, I pick it up, read a few chapters, put it down and do something else for awhile before I pick it up again. Now I can drag reading a Delaware novel out to about a week. Every year my family¹s Delaware novel starts with me. Jennifer buys it for me (for Chanukah or birthday) and then it gets passed around to the others; Joan, Liz, Jen, Carol, and sometimes Kim.

I get de-cannulated at about 5:30 and although its a little early to be considered "evening" I have been waiting for the opportunity to use the above title, so I consider this to be the Saturday Evening Post. And away we go.

Notes: Thanks to Hans for his comments on my Ethics Post. He has a way of saying things in a thoughtfully provoking and complicating way that makes me carefully think through each of his assertions, and he is always one of the translators of constructivist thought.