105) Considering Passing On and Remembering to Enjoy Every Waking Moment

February 22, 2007
Thursday

Morning: Went to a memorial service for Michelle’s mom, Thelma, at the Dell Center this morning and wore my funeral & wedding suit. I have been thinking a lot about Thelma’s leaving this earthly plane. If death is like a long sleep, I hope she is sleeping gently. I have spent time considering the post modern, constructivist view of reality and wonder if there is a constructivist realm on the other side of life. We all know that there are as many truths as people elect to believe in, thus lending support to the post-modern perspective on life and living. But what about death? I wonder if a person passes on and their particular truth of what ever is beyond comes to pass, simply because they created it in their universe. We know that the medical model map of the human being is a construct that works here in the West… and, the acupuncture map of the human being is a construct that works for people in the east. How many possible afterlives there must be if the same flexible rules of reality extend beyond this physical sphere. I recall an article in Time where scientists argue that “…near death experiences are not the eyewitness reports of a soul parting company from the body but symptoms of oxygen starvation in the eyes and brain. In September, a team of Swiss neuroscientists reported that they could turn out-of-body experiences on and off by stimulating the part of the brain in which vision and bodily sensations converge.”* There were many letters written to Time in opposition to these scientific reports, which is curious because it is a very constructivist, post-modern notion that belief can challenge “science” on any rational grounds at all. Some of the responses are from people who simply don’t like to think that consciousness can be mechanized, and others actually step into the post-modern realm by challenging the reality of science: “Trying to understand consciousness by probing the workings of the brain is analogous to trying to find the source of pictures on your TV by analyzing the workings of the TV set. Until scientists recognize the transcendental nature of human existence, they will continue to wander blindly in a fog of ignorance.” ** What a great world to live in where we can have these discussions and these wild ideas. It reminds me of a line in a Ferlinghetti that goes something like, the world is the greatest place to be for having fun and thinking…

Yes the world is the best place of all
for a lot of such things as making the fun scene
and making the love scene
and making the sad scene
and singing low songs and having inspirations
and walking around
looking at everything
and smelling flowersand goosing statues
and even thinking***

Coming back to Thelma; I hope that whatever she anticipated in her dying has come to pass. And I hope that her family can remember all the ways she was a blessing to have in their lives, and keep her with them in their hearts and brains.

There was a nice anonymous piece read at the memorial service that I print here in her memory.

“I am standing upon a seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length, she hangs like a speck of white cloud; just where the sea and sky come to mingle with each other.

Then someone at my side says, “There, she is gone!” Gone where? Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her. And just at the moment, someone at my side says, “There, she is gone!” There are other eyes watching her coming, and other voices ready to take up the glad shout. “Here she comes!” And that is dying.

El Milagro: I got to the center late today because of a meeting that kept me at my office until 4 o’clock. Carol the Tech cannulated me quickly and I settled in for another blood-cleaning session.

Notes: In at 74.4 and out at 72.8 Kgs.
* Pinker, S. (2007) The mystery of consciousness. Retrieved online February 2007 from the Time Magazine Webpage at http://www.time.com/time/magazine/article/0,9171,1580394-3,00.html
**Finding your way around the brain. Retrieved online February 2007 from the Time website, http://www.time.com/time/magazine/article/0,9171,1592097,00.html
*** Ferlinghetti, L. The world is a beautiful place. Retrieved online from The Favorite Poem Project webpage at http://poetry.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=poetry&cdn=education&tm=5&gps=102_197_835_541 &f=00&su=p284.5.420.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.favoritepoem.org/poems/ferlinghetti/
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February 24, 2007
Saturday

Morning: Called in at 8 this morning to get an early time; talked to Phyllis the Nurse (Ms anti-blog) who said 12:30 is the earliest I can get in.

Watched Shayna’s basketball game and now at the end of the season (one more game) she is really getting it. She grabbed about three rebounds, ran the ball a little, passed well, set some screens, and even scored! Her score came at the end of the game when she snared a defensive rebound, dribbled down court and right up the center to a few feet in front of the free-throw line, and swished the ball. This was a really good game for Shayna (#12), especially after she had already run a mile this morning for the Marathon Kids event at Burger. This afternoon she has a soccer game so she will be one tired kid at the end of it all.

I drove from the game over to El Milagro and got there 15 minutes early.

El Milagro: Gladys cannulated me today. The place wasn’t really crowded today and I can’t ever figure out why. Gladys says there aren’t that many people missing dialysis, but it just seems very empty. She hooks me up and I settle into flipping channels between college basketball games and finally end up engrossed in a movie with Anthony Hopkins… The Human Stain*… a great movie based on the Phillip Roth book. But, I have to flip over when the UT game starts, so we’ll have to rent the movie sometime to watch the end.

Herman the Nurse comes up to me at some point… actually he is walking by busy as a bee, and then he stop as if he has just remembered something… and, he turns back towards me and says, “I want your feedback on an idea we are exploring. We are thinking of offering an overnight dialysis that would be for 6 hours, starting at 9 and ending about 4:30 in the morning. It would be longer and slower, which is better for people’s… (blah de-blah de-blah) and their clearance (blah de-blah). For working people it sometimes helps them to feel less worn out after dialyisis. Would you think about what you think of the idea and get back to me about it?” I said, “Sure.” and list some of the pros and cons in my little brain:

Pros: Probably better for work-a-day world; Supposedly better for my health; Get my full hours at work every week;
Cons: Takes more time from family; Sleeping alone three nights a week;
Worries: Will I be able to sleep well all hooked up?; Will I be able to go to sleep with full cable, or will I stay up til 2 am every nite watching TV (like I sometimes do in hotels)?; Will I be comfortable in the chair or bed they have?

UT vs. Oklahoma is a refreshing game to watch as UT stays comfortably ahead of OU all the way through until I have to leave my session to zip home and dress up for our dinner date.

Saturday Nite: Downtown Austin: I would not really recommend the Roaring Fork**. The service was slow and confused. The food was fair and the cost was higher that the food warranted. In our party, we had the snapper, duck, chicken, and porkchops and I tasted everything but the chicken. The porkchop was good but too garlicky. The snapper was tasteless and the duck was good but a little salty. The restaurant was full of people and the décor and the interior set-up didn’t do anything to lessen the feeling of crowdedness. The location of this place is incredible; right on the corner of Congress and and 7th and it’s too bad the owners didn’t make it a more open, expansive kind of interior so we could all look out on the main street of Austin. (There you have this blog’s first restaurant review.)

Afterwards we all went over to the Paramount***, where we had tickets for Madeleine Peyroux. This was a good show… very jazzy with some blues included. The musicians were excellent: great lead guitarist and piano player. Rather than review this too, I’ll refer the reader to Larry’s review once it’s up on the web. I enjoyed the show and will try to find a CD of hers to add to my collection. (As Lizzie is editing this, she remarks that we already have one of Peyroux's CDs and it's in her mini-van)

So, thus finishes an eventful and full day of a dialysis patient. We can enjoy life even though we have this dialysis albatross around our skinny necks.

Notes: In at 74.9 and out at 72.8 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* The Human Stain retreived online February 2007 from http://en.wikipedia.org/wiki/The_Human_Stain
**The Roaring Fork retrieved online February 2007 from http://www.roaringforkaustin.com/
*** The Paramount Theatre retrieved online February 2007 from http://www.austintheatre.org/site/Calendar/286142415?view=Detail&id=11761

104) Paired Exchanges

February 20, 2007
Tuesday

Morning: Emailed David the Social Worker at the Transplant center about “paired exchanges” and got the following reply: “Our transplant center has just joined a consortium of other transplant centers in several states to do what is called "paired exchanges" where a transplant candidate has a willing but unmatched donor who can be matched with someone else's donor in the same situation. Just last week we went through and pulled all of our closed living donor files where there was a mismatch with our transplant candidates not yet transplanted. We will be sending them letters soon to let them know of this potential to still help their family member or friend to get a kidney by participating in the paired exchange program. However, if you have potential livings donors who were never tissue-typed because they know they have an incompatible blood type for you, we would not have them on file and they should call us if they wish to participate. Actually, it might be best if they call us even if they were tested just to make sure they are not lost in the process somewhere.

As for the insurance question, it should not make a difference. If the insurance covers the living donation evaluation and surgery for a donor who is not on the same plan as the candidate, it should still be covered. However, there may be some additional charges not covered by insurance, such as travel and other such expenses for the donors. I hope this helps. Let me know if you have more questions.”

More about “paired exchanges”* can be found on the web and I am researching the current thoughts on these strategies and will report on this blog what I find.

El Milagro: I shot over from work and got here right on time today. Gladys stuck me while the new doc, Ron the Nurse, and Jennifer the Dietician did their walk-through review. They gave me an excellent report and Jennifer applauded my recent decrease in the phosphorous numbers and I got the doc to give me a 3-month prescription to send off to the mail-meds people. The place again seems less busy today and I hear from staff that it’s partly because the north center is re-opened after restoring. Today I’m sitting by a guy who is coughing his head off and the staff are seemingly concerned about his health and considering whether he should go to the emergency room. And I am wondering if I should ask for a mask to wear while I’m sitting this close to him. I look over at Phyllis and Herman while they are attending to him, to catch their eye with a wondering look but they are too focused on him and I finally just settle back and say to myself, “Nam Myoho Renge Kyo” and know that all things are according to God’s will.

Once my neighbor leaves it is a quiet evening at the center. I read a report for work, watch the news, and watch a TLC Channel show on overhauling a ’64 Chevy Malibou.

Notes: In at 76.3 and out at 72.9 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

*Crawford, D. (2007) Paired kidney donation helps Cleveland, Columbus couples. Retrieved online February 2007 @ http://medicalcenter.osu.edu/patientcare/hospitalsandservices/press/?ID=2215
* Ross, L. & Zenios, S. (2004) Practical and ethical challenges to paired exchange programs. Retrieved online February 2007 from the American Journal of Transplantation @ http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1600-6143.2004.00574.x

103) Katie’s Soccer Game

February 17, 2007
Saturday

Morning: Went to one of Katie’s Crockett HS varsity girl’s soccer games this morning and got there after she’d already scored twice. DARN! The score was already 5 – 0 when I got there with about 10 minutes left in the first half. It was cold with a brisk north wind coming down through House Field and Crockett had the wind at their backs, lending a good natural support to their score, I figured. In the second half they were fighting the wind and yet I was able to see Katie score again with about 12 minutes left in the game. She was playing right forward and dribbled the ball through two defenders, from just beyond midfield up the field to the north goal. There was no defense as Katie dribbled carefully up to about 12 feet out of the goal and then she shot a hard ball right into the chest of the goalie. The goalie stopped the ball but somehow let it bounce off her and back towards the still charging Katie, who adroitly blasted it back past the right side of the goalie, and into the goal for the score. That made it 6, zip. Travis High scored a goal or two with the assistance of the 15 to 20 mph winds pushing their shots. A few minutes later, Katie again dribbled the ball up the right side of the field to about 30 feet out and passed it to the left forward who deftly kicked it in for another score (see picture ~ Katie in center in black tights). The final score was Crockett 8, Travis 2. I talked to Katie afterwards and she was delighted that I made it to this game. I told her I’ll be at a few more that are at times I can make them.

El Milagro: I called in and found out I can come in at noon, and then had to call back to re-schedule for 2 so Liz can go visit a friend whose mom is on her deathbed. I arrive at 2 and the place is quietly humming along. Seems like there are a lot of patients absent. I’m in my favorite chair today; the one in the corner where I have an almost separate perspective of the whole place; plus the area behind the nurse’s counter where all the mission control decisions are made (I hallucinate). However, even though I’m scheduled in the corner chair it’s not set up for me… so Herman the Boss makes a command decision and tells the tech to set it up with a new dialyzer so I don’t have to wait for half an hour to start my session. They change out the dialyzer and Carol smoothly cannulates me. Then Herman fixes my TV clicker again so it clicks and I am off into another dialysis session. I’m watching Mizzou beat OSU 75-64 at home and that is an exciting game, and then the Nebraska – Kansas game comes on and I can’t watch after the first half cause it is so sad to see Nebraska get so smeared by the Jayhawks (92-39). So I’m cruising the channels, watching a show about the best hot dogs in the country. In Hawaii they featured the Puka Dog and I think maybe Johnny can bring home some famous Puka Dog Mango Relish. Then I click over to see the guys on Mythbusters trying to split an arrow like in the Robin Hood movie. And, of course, I doze a little.

At some point Matt the Tech comes up and I ask him why it’s so quiet around here. He says some of the patients on the first shift didn’t show up and that made the whole day happen sooner and he is looking forward to leaving early. I ask why people don’t show up and Matt thinks that some folks just don’t get it how important their dialysis is. He continues that some people don’t show or they show and then want out early and they sign the form to release El Milagro from liability as if it is just a bureaucratic thing, rather than seeing it as a strong reminder about how important dialysis is to their health. And, he also thinks that some people just have a hard time sitting there, or they are anxious about it, or it freaks them out, or they don't know how sick they are or something. I mention that it seems to me that that would be a social work-type job; educating dialysis slackers about how important it is to get all your dialysis, and deal with the resistances the person has. This might be a good conversation to have sometime with Marilyn the Social Worker.

When I get out of the place at about 6:30 there are only a couple of people still there. So, another Saturday at dialysis and I can say unequivocally that basketball season and full cable TV makes dialysis easier to take on Saturdays.

Notes: In at 75.0 and out at 72.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

102) Kidney Day & Phosphorous News

February 15, 2007
Tuesday

El Milagro: During my dialysis session Herman comes up and reports on his recent visit to the Capitol for Kidney Day as proclaimed by Senate Resolution 82* as February 8th. Herman said that a bunch of kidney enthusiasts, including a contingent from the PKD Foundation in their green t-shirts swarmed the Capitol and sat in the galleys listening to the proceedings before going to visit three legislators. They visited with Kirk Watson, Eddie Rodriguez, and Elliot Naishtat. Naishtat** was the only legislator that actually met with the group and Herman reported that he was very supportive of their plea. Rodriguez saw them coming and shut his door, electing to have one of his staff meet with them and they saw that as less than supportive. I said I wished I had known about this deal and Herman replied that he’ll include me in the future. Even though I missed Texas Kidney Day, World Kidney Day is coming up in March***

Herman also reported that Moritz had said in a meeting that the team approach (signing up to donate and receive a kidney when the donor and recipient don’t match) to transplant is possible here and he will check on the procedures with the transplant folks. Liz later said that she thought that the problem is with our insurance approving that kind of deal.

Later Jennifer the Dietician scoots up on her four-wheeled stool and smilingly reports that my phosphorous is within the NORMAL range (5.2 down from 7.9)! It must be the new expensive binders, Fosrenol… that chalky horse tablet that I’ve been complaining about chewing in the middle of my meals. Well, now it seems much less intrusive and cumbersome; especially if its gonna knock down my phosphorous score. I replied to Jennifer that I can handle the pill and occasional nausea in exchange for lower scores. She also worked with Ron the Nurse to improve the potassium wash the machine is giving my blood (in order to lower my potassium scores), so it looks like we have turned onto Easy Street at last. Jennifer wasn’t so sure but I am enthusiastic about this recent report!

Notes: In at 76.2 and out at 72.7 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* SR 82 recognizing Kidney Day at the Capitol available online at http://www.legis.state.tx.us/BillLookup/History.aspx?LegSess=79R&Bill=SR82
** Elliot Naishtat’s House Website online at http://www.house.state.tx.us/members/dist49/naishtat.htm
*** World Kidney Day online at http://www.ifkf.net/worldkidneyday.php

101) Someone Got a Kidney!

February 13, 2007
Tuesday

El Milagro: While I was getting my regular oil change, there was commotion in the center today. Everyone was looking for and calling for and trying to find Mr. Vasquez (or whatever his name is) because they had a kidney for him and the transplant people couldn’t find him. I imagine a freshly cut out cadaver kidney laying there on a steel table, glistening in the sterile hospital light and the attendants and doctors rushing about using their walky-talkies, cell phones, and land lines trying to find the human who will receive this organ gift.

So old Mr. Vasquez walks into the center expecting to get his dialysis and everyone swoops down on him and excitedly says, “Hey! You gotta call these guys RIGHT NOW cause they got a kidney for you!”. And poor, surprised Mr. Vasques picks up the already dialed phone in order to find out where to go and all of a sudden his plans for the next month or so are completely different than they were a few minutes ago. He has this somewhat bewildered look on his weathered face and before I know it he’s gone on to his next encounter with the medical world. Before he fully recovers from his new disorientation they’ll have him undressing in a small room and slipping into the drafty blue paper gown that’ll be his uniform for the surgery. I hope he has family and friends to support him in this unexpected turn of events.

Actually, we waiters for organs all expect these surprise surgeries to come, but the length of the wait transforms what was originally an expected act into an unexpected surprise. I was telling someone that carrying a beeper (which the transplant center gives everyone who is awaiting a transplant) becomes harder and harder to keep track of since it never beeps. After months of no beep the beeper looses its importance and it drifts into the periphery of the person’s necessary accoutrements, like in a pocket of the jacket in the closet, or in a brief case under the desk at work, or in my case to the clutter in the console of my truck. (I do pick it outa there every few days and check it) The transplant people should beep us waiters once in awhile to check on us, thereby making the beep like a variable interval reinforcer rather than the fixed ratio reinforcer based on only one beep. How long will we wait expectedly for that one beep when the average wait is 4 years?

I hope Mr. Vasques has a successful transplant and is able to escape the regimen of dialysis to the less intrusive regimen of ongoing medications to keep his transplant steadily working for him.

Notes: In at 75.3 and out at 72.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.

100) The Hundredth Post

February 10, 2007
Saturday

Morning: Wow! The hundredth post. I guess I would hope that the hundredth post would be like the hundredth monkey*; that in this 100th post my desire for a live human kidney donor would morphogenically jump from the 100 readers of this blog to the population as a whole. And, as in the story of the hundredth monkey, the knowledge about Jack’s need for a kidney, and better yet; the world’s need for people to become organ donors would become a common understanding among all mankind.

Unfortunately, the phenomenon of the hundredth monkey has been shown by Elaine Meyers not to be ‘evidence-based’ or empirically validated in the accounts of the monkey study. So, we have another case of a belief (or narrative) clash with empirical data. Some would remind us that empirical data can only support a mechanistic view of reality and therefore only validate part of the whole of reality. I would hope there are many folds of reality out there that present opportunities to validate experience in new ways, such as are found in some of the qualitative approaches to analysis. I would bet there are ways of analysis that we haven’t discovered yet that will lead to new ways to validate experiences and phenomena that don’t lend themselves to the empirical forms of study.

As Joseph Chilton Pierce expressed in The Crack in the Cosmic Egg many years ago, “The world view we inherit has been built up by putting things into objective pigeonholes…, categories that can be shared. …However, to shatter our working models of the universe (with alternative experiences of “reality”) does not lead to truth, any kind of new data, or, above all, a ‘true picture’ of the universe. The universe, like all nature, is a conceptual framework that changes from culture to culture and age to age.” ** Pearce was considering the crack between our sum total assumptions about the world (the egg) and it’s rules, and the “mode of thinking through which imagination can escape the mundane shell and create a new cosmic egg” (p.xiv).

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Milagro: I called in to find out about coming in early and couldn’t get an answer because I called in the middle of them putting the second shift on. They called back and told Liz I could come in at 1:30 so I did. I walk in and pass Phyllis the Nurse and Herman the Nurse and Phyllis says, “What’s up?” to which I reply “Nothing” and then she replies with something like, “Not much to write about? That’s going to be boring”, or something similar. I try to goad her into reading the blog (she says she never reads these things) and Herman is sure she never will, and that’s okay. But a few minutes later she is mentioning to a patient that the patient should act right because she might get written up on the internet… and that makes me feel kinda weird. I hallucinate that soon everyone will be kidding me about reporting on El Milagro and I worry I’ll become self-conscious. Nah.

So I move on around the bend and settle into my chair and it was some time before Gladys got to poking me. As usual she does an efficient and quick stick and has me all taped up in record time. I click through the channels looking for basketball games and find UT vs. Iowa State in the second half and UT is ahead by about 15 points. Ah yes, that is a good sign. They finish up winning and are now in third place in the Big 12, behind A & M and Kansas. I next find Oklahoma at Baylor and am surprised to see Baylor almost beat OU.

Now I’m ready for a doze… one of the good things about dialysis is that the whole scene promotes napping. Where else can one nap as a part of a compulsory activity? Dialysis makes it easy to take Robert Fulghum’s advice to “Take a nap every afternoon.”*** We all are too busy to take a nap and yet I find that napping is a good way to spend some time. I don’t recommend that you wreck your kidneys to get into dialysis so you can take a nap. But, find some time for a nap in your daily regimen, and I guarantee you’ll thank me (or Fulgham).

As I awoke from my nap and my consciousness rose up from a delta state through theta and alpha and pops into beta***, I found myself thinking about what I want to say I have learned through 100 posts on this blog.

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Learnings From 100 Posts: Since starting this blog last April, I have learned (1) that I can integrate dialysis into my life and although I complain and bitch about it, I am able to integrate it into my life in a way that only minimally impacts my work. I have learned (2) that I am able to successfully schedule work and dialysis and family without significantly missing anything (although Shayna’s sports functions are usually the first to go). I have also learned (3) more about how important Liz is to my ability to handle everything, since she takes care of more of the details of my life than I’d even care to mention. Without Liz helping in my personal life and Big Kim helping in my business life, I wouldn’t be nearly so able to do this whole thing.

I have learned (4) that even though I am a sick puppy, I am also alive and kicking and all aspects of my life aren’t influenced by having ESRD (End Stage Renal Dissease)… this ESRD thing sounds much more mean and nasty than I make it on a daily basis. On matter what my physical body is doing, the one thing I can always influence is my own attitude of positivity and possibility.

I have learned (5) that there are a bunch of people working in dialysis centers who are devoted to making their patients as comfortable as possible without patronizing or pitying them while they are getting their life-prolonging blood cleaning. And I have learned (6) there are tons of people in this state of being that is dependent upon these blood cleaning machines and helplessly awaiting healthy citizens to become aware of the possibility of helping humanity by donating their organs.

And, finally, I’ve learned (7) it is good to take a nap whenever you have some spare time.

Notes: In at 75.0 and out at 72.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* Hundredth Monkey retrieved February 2007 from Wikepedia online, available at http://en.wikipedia.org/wiki/Hundredth_Monkey
** Pearce, J.C. (1971) The crack in the cosmic egg. New York: Pocket Books, p. 34.
*** Fulgham, R. (n.d.) If you have ever wondered… all I really needed to know I learned I learned in kindegarten. Retrieved February 2007 online at http://www.davidpbrown.co.uk/poetry/robert-fulghum.html
**** What is the function of the various brainwaves? (2005) Retrieved online February, 2007 from Intelegen Inc.’s website at http://brain.web-us.com/brainwavesfunction.htm

99) Survivor ~ Fiji

February 8, 2007
Thursday

El Milagro: This week I have been the last person in on both Tuesday and today. Partly it is because I get wrapped up in something I’m working on at the office and then loose track of time, leaving for the center at 4 instead of getting to the center at 4. I have to do better cause I really don’t like being the last patient to leave the center. By the time I leave everyone has thrown down their professional demeanor and has turned up the hip hop popular music stations they like to listen to as they clean up and get ready to shut down for the night.


Tonight I watched the news, dozed, and woke up right in time for the first new Survivor* show of the spring season. This series is filmed in the Fiji Islands**. I was pleasantly surprised, since I’d forgotten that tonight was the debut show of this season. I know there are those of you readers who can’t imagine watching such trash and there are probably some of you who would be embarrassed to say you watch survivor… so you pretend you know nothing about it. And then, there are groups of you around who excitedly watch every Survivor series (and you know who I’m talking about, you people who work in an office at a major university sometime known as “The” university). These groups discuss the progression of the show and pick various survivors to root for. As usual, there is a survivor contestant from Texas; Rita from San Antonio and I guess we could support her. But, I have already picked my favorite; Yao-Man, a 54 year old, MIT trained computer engineer from Berkeley. In my estimation, this guy has the right ch'i*** for success in this surviving, I believe. Plus I always go for one of the older guys. There’ll be a female we choose to cheer for too, but we haven’t selected her yet. Maybe it’ll be Rita… we’ll see.

My own group includes me and my daughter, who have watched many of the Survivor series as a father-daughter bonding experience. Now, sadly, we don’t do that anymore since I’m at dialysis during the show. So Shayna watches at home and then she and I discuss it when I get home from dialyzing.

So, there you have the exciting report of my life on Thursday Night. I will survive!

Notes: In at 76.0 and out at 72.8 Kgs.
* Survivor Fiji on CBS available online at http://www.cbs.com/primetime/survivor14/
**For Fiji Maps related to Surviror, see http://www.claycritters.com/map/s14/survivor_14_map.htm
***”Qi, also commonly spelled ch'I” retrieved online February 2007 from Wikepedia at http://en.wikipedia.org/wiki/Qi#Nature_of_qi

98) In Which We Learn About Nathan’s PKD and Shayna’s Defense

February 2, 2007
Friday

Blog Watch: Spent some time checking out other dialysis and kidney-related blogs, after getting the comment from Jenna (See Comments on Post #97). Found a blog for a guy named Nathan who got a new kidney after losing his kidneys to PKD. It seems that Nathan has had much more trouble with his PKD than I have, and as I read about his adventure I feel very fortunate again that my situation is livable. He just got a transplant in January and is doing well according to his writings. You can read a letter he wrote to the donor’s family at his blog, Nathan’s PKD*.

February 3, 2007
Saturday

Morning: Shayna’s basketball team won their game against another all-girl team this morning. It is amazing how much she has improved in just the four games she has played this season. She is covering her person like glue, with her hands up, watching the ball, and going to the basket for rebounds! This coach (Ken Osborn) is the best coach I’ve seen for these younger kids. He is taking a very proactive and individualized approach to working with Shayna. He gives her pointers throughout the game and looks for exactly what she needs to work on and then talks to her about it after the game and during practice. Since she is the tallest kid on the team, he is concentrating on her rebounding and playing defense. Today she got three rebounds and dribbled one all the way down court to shoot. Her shooting still needs some work (two for 0 today), but she is getting much more assertive in taking the ball away from opponents and in moving inside to take a shot. Liz and I laughed this morning because the coach and I were yelling the same things at Shayna as she played, he from mid-court and me from under their basket. She pretty much ignored me but listened and nodded when coach directed her from the sidelines. My thoughts are that this kid, if she continues to like b-ball, and sticks with this coach for a couple years, could be the high school b-ball player in the family! She’ll be tall enough and a bit heavier than Katie so she'll be more of a presence on the court. I’m gonna video-tape one of her games for posterity.

El Milagro: I called in and talked to Matt the Tech at 2 and he said “come in at 3”. I arrived and Matt stuck me smoothly while I am already focused on the UT – KSU basketball game. This was a good pastime until the end of the game, when UT LOST! I don’t even want to discuss it. Their choice to use a zone defense opened up KSU's outside shots and they hit twice their normal amount of 3-pointers. ARGGGHHHHHHHHHHHH!

Herman came by and at some point he mentioned that “everyone” is reading the blog, to which I answered, “Oh great. And I just put a personal email from Connie up there… I hope she’s okay with that”; to which he wondered why it would matter. I thought out loud that I can always change things later, to which Herman responded with something like, “Keep with the truth”. I replied, “There is NO Truth with a capitol T… there are only truths with little 't's in this day and age.” Actually, there are as many truths as there are brains to conceptualize them (see definition of radical constructivism**) in the viewpoint of constructivists, which are a subgrouping of post-modernists.

Later Matt comes up and says nonchalantly, “I overheard you and Herman talking and I’ve been reading your blog but didn’t want to tell you.” He continued that in his reading of the blog, he liked my honesty, he thought that I was very perceptive, and that it is a good thing for him to read about dialysis from the viewpoint of the patient. Somewhere in the back of my brain I’m curious about why he is telling me that he didn’t want to tell me.

I agreed with Matt’s analysis and added that it is okay for he and anyone else to read the blog, and as a matter of fact I want as many readers as possible. My objective continues to be to educate people about PKD, the Transplant Crisis, my own desire for a Living Donor, and to give people a smile or laugh while I’m turning them on to these serious issues. Onward through the Fog!

Notes: In at 77.0 and out at 72.6 Kgs.
BTW: I've been chewing the Fosrenol tablets (my new binder for de-phosphorizing myself) in the middle of each meal (wondering every time what counts as "a meal") and then trying to get the taste out of my mouth with any liquid I can find and getting back to focusing on enjoying my meal. This process is rather easy to remember but not so enjoyable in that it takes me out of the savory and devine experience of eating for a mouthful of chewing a roughly mintlike horse tablet that dissolves into the chalky taste of a mouth of gloppy cotton. I remind myself of a dog eaating peanut butter.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* Nathan’s PKD available online at http://nmccart.blogspot.com/2007/01/letter-to-donor-family.html
** von Glasersfeld, E. (2007) Definition of radical constructivism. Retrieved online February 2007 from the Radical Constructivism homepage at http://www.oikos.org/radcon.htm

97) Fredricksburg Trip

February 1, 2007
Thursday

Before El Milagro: Drove out to Fredricksburg this morning through the fog and mist that colored the hill country a hazy white. This is a drive that I’ve made hundreds of times yet it has some of my favorite downhill curves and creeks and vistas over looking horse ranches and goat farms. It’s enjoyable to drive down these familiar roads and see what’s new and hopeful and what continues to decompose back to a natural state. I notice today several new antique (old junk) stores open along the highway and that the peach stands are boarded up for the winter. The F-burg gig is to present an ethics workshop on conversations with teens to a cadre of school-related people who work with “unaccompanied” youth through a homeless education grant. Unaccompanied means these youth aren’t staying with their parents; rather they are with relatives, friends (couch surfing), or living on their own and are considered “homeless” by the McKinney-Vento Act*. This was a great group of dedicated people and a very enjoyable presentation.

The drive out to F-burg, along with the peach sweet roll I got from the Old German Bakery when I arrived, was just what I needed to rejuvenate myself from the recent doldrums.

El Milagro: I arrived at 4 pm and noticed I’m again the last person in. I start wondering if all the last shift patients have slipped back to coming in at 3 pm again (see Post 68 – 69 by clicking on October). There have been times during the week that center staff have called me to find out if I can come in early, which I can’t because of work. But now it seems that people have gravitated back to being ahead of schedule, so maybe I can start going in earlier too.

Gladys stuck me today. It was okay. Not much to say.

I listen to NPR’s All Things Considered, slept through the TV news, watched the Coddington crew work on their ’42 Ford Woodie**, and finished up with Gray’s Anatomy. So it goes.

I got an email from Connie the Nurse, who said "...been reading your blog, I know dialysis can get boring, I assume writing about it every treatment can get boring too, but where else can I find out about the goings-on at El Milagro? That is my favorite part, finding out who screws up or who does good...". I don't know if she wanted this posted, but my choice is to post it.

Notes: In at 75.1 and out at 72.8 Kgs.
*Natl. Coalition for the Homeless (2006) McKinney-Vento Act. Retrieved online February 2007 from
http://www.nationalhomeless.org/publications/facts/McKinney.pdf
** American Hotrod available online at http://turbo.discovery.com/american-hot-rod/american-hot-rod.html

96) Phooey on Phosphorous

January 30, 2007
Tuesday

Before El Milagro: I have been rushing around all day preparing for a trip to Fredricksberg for February 1st and thinking that tomorrow is February 1st until it finally dawned on me that there are 31 days in January and my trip isn’t until the day after tomorrow. So, all of a sudden I don’t have anything pressing to do. Okay. So, I guess I’ll just complete myself an Organ/Tissue Donor Card, which I’ve been asking my readers to do but I haven’t myself done. I am sticking that card in my wallet, announcing that I will donate tissue (gesundheit!) and all my functioning organs, which would be my eyes and liver and heart basically. Liz says she’ll complete the card I printed for her too. There. I am now a donor.

El Milagro: I’m here and seem to be the last one arriving for my shift. Matt cannulates me and we discuss Osama Bin Laden and how he handles his dialysis. According to Matt, he is doing peritoneal* which means he has to do it several times a day and the process is much more touchy as far as getting infections, so we wonder how he is able to keep from getting infected since he is probably in less than adequate situations, like being in a dirty cave. Matt heard that Bin Laden has a cadre of physicians that care for him but it still seems like it would be very difficult to be on the lam and on dialysis.

Jennifer the Dietician reported to me that my last blood work shows that my phosphorous is back up to a dangerously high 7.9 so it is time to experiment with another binder. What does dangerously high mean you might wonder? Well, “some of the serious effects of hyperphosphatemia are: 1) bone disease (bones lose calcium leaving them brittle and weak); 2) Calcifications and mineral deposits in body (lungs, joints, eyes, heart, and skin); and 3) Cardiovascular problems (heart disease and stroke).”** So far the only symptom I have at times is itching and it comes and goes.

J the D wants me to 1) put away my Renagel 800’s for awhile; 2)take one chewable Fosrenol*** in the middle of each meal; and 3) continue to take 3 Phoslo at the beginning of each meal. Hopefully this new regimen will bring the phosphorous numbers down to acceptable (3.5 – 5.5). Of course, this means purchasing one more very expensive medication….. arghhhhhh!

After Jennifer leaves me, I am bummed out and lethargic and spend the rest of my session dozing and losing myself in NPR’s All Things Considered**** in my earphones. Nebraska’s recent difficulties over their state song brings me out of the doldrums… and I notice suddenly that it is about 7:30 and I’ve slept through Marketplace. I switch earphones to my TV set and begin to watch Law & Order for the remainder of my session. So it goes.

Notes: In at 75.9 and out at 72.8 Kgs.
* Natl. Kidney & Urologic Disease Clearinghouse (2006) Treatment methods for kidney failure: Peritoneal dialysis. Retrieved online January 31 from http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/
**About high phosphorous levels available online at http://www.fosrenol.com/Consumers/PhosphorusLevels/Diseases.aspx
***Fosrenol info available online at http://www.fosrenol.com/Consumers/Default.aspx
****All Things Considered available online at http://www.kut.org/news/show/25

95) Questioning Posting

January 27, 2007
Saturday

El Milagro: I’m here at 3:30 today and walking in past Herman the Nurse, asking if he will come look at my arm when he gets a moment. Well, he comes over and checks it out: I have noticed a lump in my arm that seems like it is in my vein about an inch above the pin-cushion area where they stick me up and down a stretch that runs about 4 inches up my arm. He feels it carefully and reports that there is a lump (duh!) and that it is not in or part of the vein. He shows me how he moves the vein aside and the lump is still there, so it is maybe in my muscle. He says if it doesn’t hurt or get bigger I shouldn’t worry about it. I replied that I just didn’t want it to turn out to be a clot in there. He explained to me that clots usually feel gushy, not hard. Since Herman is giving me a medical opinion, he sticks around and sticks me. Turns out the dialysis machine is not connected properly (the transducer line isn’t tightly connected) so he has to finagle the machine to extricate the air bubbles from the lines so the machine doesn’t sound it’s alarm every few minutes. These machines are calibrated carefully to sound an alarm when any of about a hundred things go haywire.

Ron the Nurse comes up and I ask him about a form I completed last time I was here. It was a form that documents that I know the rules of the facility. One of them had to do with not cutting my toenails myself; recommending that a podiatrist do it. I asked Ron about this one and he replied that that rule is really for the people here who are diabetics. I replied, “Why don’t they specify that then?” and Ron and Herman both replied, “Because 90% of the patients here are diabetics, so the form is written for diabetics”. That was an interesting detail that led me to ask how many people are here because of PKD and it turns out there are only three of us! Aside from the diabetics, most of the others have kidney failure as a result of hypertension. I had always hoped there would be more PKD folks and had planned to get to know some of them to compare my experience with theirs. Oh well. In this conversation we also briefly touched on the passing of Sandra (Post # 52 in September) who died on Christmas eve after a stroke. Around here we can go for awhile before we realize the absence of something that at first seems to be a nuisance. In this case I remember that it had been awhile since I’d heard a person who is part of the group saying “help”.

I was in Houston yesterday and at some point catching up my colleague and friend, Deborah, on the dialysis adventure; trying to explain that it has become boring now that I’ve been doing it for almost nine months (I could be birthing a kidney right now if it was a pregnancy). Boring is only the best word I could come up with at the time: meaning that nothing in the experience is new and curious at this point… it’s more like a chore that must be done with no chance of making it into a “fun”, or “educative”, or “developmental” activity. Deborah responded that maybe it is now an emotional drain, but that’s not quite it: mostly it is just tiring. I’m tired of it! Oh well.

So, today I’m watching UT basketball; one thing that helps pass the time here where I am tired of the experience. UT and Baylor played a good game in the respect that UT didn’t just beat them to a pulp. UT was lackadaisical and Baylor played pretty good, and at the end UT won… “Whew” We didn’t need to lose another conference game.

So, I write on and wonder at times why I even do this. I do enjoy the writing part, and as all writers, I guess I partly hallucinate that someone will read it and either learn something, or get a laugh, or be reminded of something that is flitting around on the edge of their consciousness. When the experience of dialysis is “boring” I am led to further consideration of the purposes of writing, since the original goal was to document the experience of dialysis. I guess I could go on indefinitely documenting how boring it is but that sounds very adolescent when I say it to myself. “I hate dialysis. It’s so boring.”, he whined pubescently. Another goal is to use this medium to advertise my need for a healthy kidney and a munificent doner person. So, in the service of that goal, I guess I should write, write, right? I worry sometimes that I’m just composing for my own aggrandizement, and then I think that that concern probably keeps some people from writing at all. I have to move beyond that worry and positively hallucinate that there is a good reason to continue this even though the actual experience of dialysis is becoming a bore. For now I conclude, “Oh well”

------"The sooner you fall behind,
-------the longer you have to catch up."
-------------------------Garrison Keillor*

Notes: In at 75.7 and out at 72.9 Kgs. (I have gained some weight and Herman adjusted my dry weight to 73. That’s 160 lbs!)
* Keillor, G. (2007) A Prairie Home Companion, available online at http://prairiehome.publicradio.org/

94) Mid-day Dialysis and Venerating Mitch

January 23, 2007
Tuesday

El Milagro: I’m driving across town in the rain at 10:30 am because I’ve arranged to attend dialysis in the middle of the day today so I could attend a surprise 30th anniversary party for one of the stalwarts of youth services in Austin; old Mitch. Going in for dialysis after an hour or so at the office is a bit strange. There are people here I’ve never seen before so it is kinda like going to dialysis in a different city. The TV’s are all turned to soap operas and most of the patients are one-legged men (it seems). I am a bit out of place and the staff recognizes it. They say things like, “What’re you doin here?” and “You like it so much yer coming in early, huh?” and “Want an extra fix?”. We’re jokesters all, since I say things like, “Just an oil change and wash my windows please.”

I don’t quite know what to do with my time today. I am NOT going to watch TV at this time of the day. I settle in to plugging my ears with music from KUT over my own little radio and settle in for a slow four hours. Some reading of Winik’s book (see Post # 84), some napping, and some thinking about the world without Insoo (see Post # 91). Marion Winik has written a bit about death… losing her man and leaving Austin because of the memories. She describes emptiness and its feeling creeping into locations that formerly had good feelings attached to them. Or, maybe she said something like having that empty sense follow her into locations where she used to feel good… going out to eat in a place you used to go with the person lost and feeling totally out of place there and ultimately having to move outa town.

When I was training in Abilene on Monday I mentioned Insoo’s passing* and it motivated me to really try to get her ideas infused into the participants. Plus I drank some very strong coffee. I felt like I had to take some responsibility for doing Insoo’s job from now on. Those are big shoes (metaphorically, since she had tiny little feet) to fill and I realize I am not the one to do that really. But, thoughts of her did charge me up and I could hallucinate now that back on Monday her spirit was within me as I did parts of the training. I could hallucinate that now but I won’t…. it’s just too weird. Leave it that I had her in part of my mind as I was doing the work and I did try to do a job that she would’ve been proud of. And, I think the group, based on feedback, thought it was a good training on solution-focused family work. (I pretty much stuck to the Solution-Focused ideas of Insoo rather than expand out to other people's ideas.)

Meanwhile, back at my mid-day dialysis, I woke up from some fuzzy dreams and it was time to unhook and go back to work. I mustered up all my energy and headed back to the office for an hour or so before picking up Liz and heading to the Broken Spoke** for the Mitch thing.

When we got to the Spoke we immediately heard that our friend Steve had been temporarily delayed and they asked me to present a flag which flew over the capitol today to Mitch, which I was happy to do, although I wasn’t quite sure what to say about that. “Here is a proclamation and a flag, Mitch. Long may it fly free”, or something. In the actual presentation, I added, “If you want to, I’ll help you put up a flagpole in your back yard” and he mentioned how nice the wooden box is. All in all, it was a great ceremony with lots of funny stories and a bit of Texas speechifying (from Thomas). There were some participants who thought Mitch was actually surprised and some who thought not. Everyone seemed to enjoy the event. Liz and I stayed for the honors and left early to get some Chinese food on the way home.

Notes: In at 75.0 and out at 72.8 Kgs.
* Read Insoo's Obit at The Brief Therapy Center website at http://www.brief-therapy.org/
** Explore the Broken Spoke at http://www.brokenspokeaustintx.com/

93) Sick & Tired of ESRD

January 20, 2007
Saturday

El Milagro: Jo the Nurse called me to come in at 1 today. The place was back to full swing and I settled in to watch the Longhorns Men’s basketball team lose to Villanova… terrible game all around. Then I was able to catch the US Soccer team beat Denmark 3-1 so that was a pick-me-up. Landon Donovan finally scored after a 1 1/2 year scoreless streak! That made me think, “you just have to play on and find other parts of the game that you can feel good about until the fates or your skill brings an opportunity to score. And maybe you try to score many times before you succeed but if you stay immersed in the process rather than focusing on the end result, then you can still feel good about your participation.”

Even though I get sick and tired of this dialysis business every several days, I recognize (“I understand…” as Bush would say) that this is the process of functioning in my world; described as “End Stage Renal Disease” or ESRD on the medical charts. Although the outcome is scoring a new kidney, preferably from a live person, I can’t put all my focus on that score. I have to continue to stay with the present, continue to play the game, and find ways to explore and embellish the process. One of the ways is to continue to document this whole thing here on my blog (informing you, the reader about a slice of life you may not be aware of). Another is to become a patient representative with DaVita (I have begun the process on this). Another is to continue my correspondence with Lloyd Doggett about the need of people with ESRD and PKD. And, of course, as with any process, learning more about all the facets of it is a continuing endeavor.

According to the people at the Transplant Center, my process of going without scoring will be approximately another three years and as that time passes the dialysis ultimately wears heavily on my system. Three years is the guesstimate of how long it’ll take to get a cadaver kidney. If I am fortunate enough to find a live donor* (Blood Type A or O) out there in lurkdom (those who read but don’t comment on blogs) then the wait would be less. That’s the solution that I would wish for… so, readers, think about becoming donors!

My new bumper sticker that the Transplant Center folks say will attract donors reads:
Say “YES” to Organ Donation
RECYCLE YOURSELF

Notes: In at 74.9 and out at 72.1 Kgs.
More about live donors at "Help Save A Life" online at http://www.unos.org/helpSaveALife/promoteOrganDonation/

92) Ice Day

January 16, 2007
Tuesday

El Milagro: The place is eerily quiet with only about half of the patients here for their sessions. The staff seemed to all be here, although Herman had mentioned earlier on the phone that some of them were having trouble getting in this morning. So what’s the deal?

ICE! We in Austin have had two days of the kind of weather that stops this city… aside from the Governor’s Inauguration Ball, which Rick Perry refused to cancel because it is HIS big deal. After all the money spent “the Committee” was not willing to cancel, even though only about half his nobility could perambulate the ice. For all others, the city authorities cautioned staying home. Schools, state offices, and restaurants were closed. Honky tonks stayed opened.

However, when one is dependent upon 21st century machinery to stay alive, one must brave the elements for a fix, no matter the slickitiness of the ice or depth of the snow drifts. I fondly remember my mother saying when I was an impressionable youngster, “...I remember… when I was a kid we walked fifteen miles through snow and slush just to get to school…” So, against the cautions of Toby the City Manager, I bundled up and headed out into the freezing afternoon sleet in Liz’s Sienna. I wasn’t gonna risk wrecking my T-100, was I? Besides, her Sienna has front-wheel drive.

The drive over to El Milagro was uneventful and I even picked Katie up from her on-and-off-again friend’s house and delivered her to her mother’s house on the way. There was no sliding around on the roads and actually very little ice that I could see.

But, the idea here is to consider how it feels to be dependent upon a machine that sits across town. I wrote in Post # 31 (click on July) about possible scenarios after N. Korea nukes Central Texas and here I am considering another scary scenario in which the needed machine sits across an icy wasteland racked by the worst blizzard of the century; and I must set out on snow shoes from my Oak Hill homestead, hoping to make it to the I-35 corridor before my energy wanes and I hallucinate that the next snowdrift looks a lot like my fluffy pillow and boy would it be nice to just lay down and close my eyes for a bit… “No. No.” I say to myself; “I must drag myself on. One step at a time. Don’t lay down” I scream at myself internally. “Move on! Onward through the fog.” So, just then this maroon Hummer comes along and the window rolls down and it’s Jerry Jeff, with his ‘old friend*’ hat on and he offers me a ride to the dialysis center. “Thank God for Austin musicians” I think, and Jerry Jeff adds, "..and don’t forget to support the Sims Foundation.**” And then, as I hop into the huge vehicle, I yell out to the white flurry, “… and support Musicares*** too!” Well, that’s one hallucination in which I make it. (I think I must have little icy shards within the folds of my brain.)

I don’t really like the idea of being dependent upon a machine across town. That is one of the down-sides of dialysis. Darn! But on the other hand, for an old person who used to live a life of risks, I guess the notion of depending on machine in a storefront across town does have a little exciting pizzazz. But driving over there and back in Austin's version of winter weather didn't really do it for me. (Boy am I getting old... and another fun exciting thing to do is to run backwards down the hill in my skivvies waving a pair of pinking shears.)

There ya go, Kokomo. Onward thru the Fog.

Later: Herman was interviewed on the 10 o'clock news tonight about how important it is for the center to stay opened during inclement weather. According to the report, "Madrid says he's had to dramatically alter patient schedules over the past few days to accommodate those patients. "For the most part, we have to stay open to make sure that these patients get the dialysis they need," said Madrid. "**** Good show Herman! You look very handsome on TV, by the way.

Notes: In at 75.9 and out at 72.1 Kgs.

*Jerry Jeff Walker's hat from Texas Hatters, online at http://www.texashatters.com/product_detail.php?id=86
**SIMS Foundation, online at http://www.simsfoundation.org/
***Musicares online at: http://www.grammy.com/Musicares/

****Ochoa, E. (2007) Patients weather ice storm for treatments. KVUE News available online at http://www.kvue.com/news/top/stories/011707kvuedialysis-cb.4d8c91a6.html

91) Goodbye to Insoo Berg

January 13, 2007
Saturday

Morning: It is now public on the web that Insoo Kim Berg has died last Wednesday night. Insoo was a friend of mine and Liz’s and we usually visited whenever she came to Austin. Over the years I attended a number of her trainings and when Liz started bringing her to town I got the chance to begin going out to dinner with her. I always looked forward to time with Insoo because I always learned something from the encounter and she was great fun to hang out with. Even though she was a famous originator of cutting-edge ideas in family counseling, she was down-to-earth, genuine, and easily approachable. I recall a dinner where we got into a spirited discussion about Bill O’Hanlon’s marital escapades and how at some point Insoo tossed a teaspoon at me to make a point. I had just been in touch with her in the last few weeks, arranging for her to come do the pre-conference institute for our next conference. Insoo had emailed me on January 4th, saying about her husband's passing; "It has been a profound loss and I am finding my ways slowly to learn to adjust and build a new life.." When Cynthia wrote me that she had died, I couldn’t believe it and it is still difficult to accept. Her passing is a great loss to the world of strengths-based counseling, to the world of social work, and to the world of compassionate people.

I think that the most remarkable thing I learned from watching Insoo work with families, was her insatiable curiosity. She would cock her head to the side, and get this quizzical look on her Asian face and say slowly, “How that happen?” in her over-emphasized foreign accent. Insoo epitomized Carl Whitaker ‘s “go slow to get going”! In using videos of her work in my family therapy class, time after time, I always get comments from the students about how slowly and compassionately she develops a change strategy with families.

I will miss you, Insoo. Rest in Peace.

You can read several announcements of Insoo Kim Berg’s death on her Brief Family Therapy Center’s website www.brief-therapy.org and on the Solution-Focused Brief Therapy Assn. Website – www.sfbta.org

El Milagro: Crystal cannulated me and I basically spent my session watching the UT basketball team handily beat Oklahoma (Who’d you go for, Tom?) and then watched an exciting finish to Virginia Tech upend the top ranked North Carolina Tar Heels. What a game. VT also beat Duke earlier in the week, so they are currently the team to watch.

Notes: In at 75.3 and out at 72.8 Kgs.

90) Annual Transplant Physical

January 12, 2007
Friday

Renal Transplant Center: Got my annual physical today (EKG, blood work, chest X-ray, and poking and prodding) by the Head Doc, Dr. Lewis. At the end I had a longish conversation with Dr. Lewis, the Transplant Nephrologist for our region. He concluded again, as last year, that I am an “excellent candidate for transplant” and he wondered if I had found anyone to donate their kidney to me yet. I said I had had two interested people who weren’t a match and am still looking and publicizing my needs via my BLOG… which would be this very one.

As part of our conversation about the miserable condition of our regional kidney program, Dr. Lewis said there are currently 2000 people waiting for transplants in our region (Austin, San Antonio, and down to the Rio Grande valley). He told me the story of how things have gotten worse over the years: that originally Austin was one of the first areas to do kidney transplants and the Austin community (doctors, patients, relatives and community interest groups) had done all the work to organize and administer a well-functioning program. Then in the 90’s the feds decided to regionalize the nation and put Austin into a region with SA and southwards. According to Dr. Lewis, SA and southwards has done a poor job of publicizing and marketing organ donation and because of that most of the organs up for giving still come from Austin, but now they go to a much larger region, which hurts Austin. He continued that SA and southward just aren’t able to market organ donation successfully and I offered that perhaps it has something to do with the proportion of Catholics in that area. Dr. Lewis said he didn’t know what it has to do with, but he wishes Austin could find a way out of the region and get back to doing work just for our community.

We also discussed the coming change that will allow trades among prospective donors who don’t match their donees. According to the doctor, we are this (fingers ¼ inch apart) close to being able to trade donors, and it doesn’t have to do with a legal change; just with organizing and computerizing the procedures. Dr. Lewis doesn’t think that donor trading will make a huge difference in the finding of donors or in increasing the total number of transplants. He thinks there are just too many variables involved that continue to mess up the process.

He also reported to me that the way people are chosen for available cadaver kidneys is by length of time on the list first. Then, the criteria is the match, and only in very few instances is the need considered over the time or the match.

I also touched base with David the social worker, who gave me some marketing bumper stickers. The transplant coordinator (Alisa) warned me to get ready for a donor; saying, “Those bumper stickers’ll have people knocking at your door.” I’m a bit less convinced, but do like a sticker or two on my truck. That’s it for now.

89) New Blood Work Report

January 11, 2007
Thursday

El Milagro: Got my most recent blood work report from Jennifer the Dietician today. J the D reported the good aspects of my blood work first (good Solution-Focused girl that she is): Albumin protein stores and protein intake are good; red blood cell count is good; and iron saturation and stored iron are both good. Although it looks like the Sensipar is helping take down my PTH (parathyroid hormone; see Post # 10 in May), it is still in the high category at 308 (should be 150 – 300). Also, this time my Potassium is high again at 6.1 (over 5.5 is bad), and my Phosphorous is still high at 7.1 (over 5.5 is bad).

Jennifer the Dietician quizzed me on my recent food intake for the day or so before the blood work and we couldn’t come up with anything that indicated why these numbers should remain so high. All the key high potassium / high phosphorous foods are not being ingested by this guy… although I must admit that I did eat some leftover turkey enchiladas on the night after my blood work. Hey! Those are the first enchiladas since the enchilada boycott began and there is absolutely no way to say “No!” to turkey enchiladas made from leftover turkey from our New Year’s feast. I just couldn’t do that. But, I only ate about four of them… with green chile rice and sour cream… yum yum.

So, J the D is gonna talk to Dr. Moritz about experimenting with a different combination of binders cause she thinks I’m taking a lot of binders for my results to be so poor. And so it goes.

I was also a bit fuzzed out today. I forgot my dialysis bag so I didn't have all the stuff one needs at the dialysis center, like my blanket, Shayna's pocket radio, my TV clicker, and my TV earphones. I had to sit there and freeze myself for four hours. It was like doing a strange sort of penance in honor of the terrible news I heard just before coming over here.

I had just heard earlier about the death of one of my favorite teachers and mentors. I don't like being mysterious, but was asked not to mention who it is yet, since her death hasn’t been made public yet… but I can tell you that the world has lost one of the most beloved, compassionate, curious, extraordinary, and cool people I have ever met. There’ll be more on this later.

People come and go in this universe and some are like shooting stars and some are like supernova and some are like black holes. I think that the more we study about the vagaries of the universe the more we can understand our place and the impact individuals can have on the flow of the universe of consciousness. I have no idea what this means… it just came out and somehow seemed like the right thing to say just now.

Notes: In at 75.0 and out at 72.1 Kgs.

88) Of Relational Codings

January 9, 2007
Tuesday

El Milagro: As I walk in I touch base with Marilyn the Social Worker about a form the insurance has sent us and strongly suggested we send back ASAP. Their letter says, “We are constantly looking at opportunities to help control the costs of health care”… which really means, “We’d like to find a way to keep all the money you pay us and not let you have back one penny worth of service if we can discover just one little mistake or one crack of wiggle room to get out of paying anything at all for your care”. I show Marilyn the form and she says, “I think I’ve got it handled’” and gives me a copy of the same form already completed and signed by Dr. Doom…., I mean Moritz. So, I thank her and move on down the isle toward my chair.

Then there is Ms. Jennifer the Dietician just sitting there as cute as a bug… so I tell her the sad story of my nausea in the evenings and ask if it might be because of adding the Sensipar 30’s to my diet. She thinks not and asks questions that bring on definitional confusion: perhaps I have the dreaded acid reflux. “Is that when you feel this metallic tasting burp burbling up your pipe?”, I ask and she says something like “I’m not as doctor” and then it’s downhill from there. “You’re not a doctor?” I shriek. “Well why the Hell am I asking you anything?” “You started it” she says… or, something similar… and our voices quickly fade out and I move along down the isle to my seat, front row center for the dialysis machine. She yells after me down the isle… “This must be a topic for Dr. Moritz when we next see him.”

Tonight I’m listening to NPR on Shayna’s little pocket radio and reading more from Winik’s Above Us Only Sky. She is exploring ‘coding’… how our offspring have some of us inside them and how it pokes out at times and we recall the donor of the code and, in her case, miss them since they’ve departed this life. I too see parts of me in all my kids. Especially in Johnny since he is a boy, I think.

No. It’s not that I think he’s a boy. It’s that I recognize those codings from his mother and me more since he’s a boy….man…. whatever. On the one hand, there’s a way he looks around at times that could be his mother looking around. And there’s things he thinks that are JUST LIKE ME. Katie has codings from me too… in her obstinance about doing life her way. I hate that! She should be doing it MY way! Arughhhh! Really though… the results of her doing it her way are looking much better these days (good grades and money in the bank).

So, expanding ont the idea of these codings... there must be certain codings that could be discovered in all of us, or at least in those we consider to be our chosen family. When we go back far enough in our human history, we are all related, so the codings at some point evolutionarily are there. Although this is surely the case, those of us who are friends don't usually want to see ourselves in our friends nor do we seek to find codings of them in us. It's funny that we like to see ourselves in our offspring but reluctant to see ourselves in our buddies. There's something to ponder.

Over the holidays I’ve seen and heard from people I don’t usually have much contact with and I want to acknowledge that it is really neat to catch up with them. I only wish they would comment on this blog so we all have the enjoyment of hearing from them…. rather than me forwarding their emails to others of their ilk. Even though it might seem that sending a comment to my blog is like publicizing yourself to the whole world, there are really only about a few hundred people who read this, and most of you all know each other, or at least know of each other. Just a thought.

Notes: In at 75.9 and out at 72.7. We are adjusting my “dry weight” to account for the holidays… I have gained some few pounds, as does every happy person.

86) And So It Goes

January 4, 2007
Thursday

El Milagro: This tech who hasn’t ever stuck me stuck me today. He was a little too sure of himself and whistling nonchalantly as he inserted two needles in my fistula in the wrong direction. I pointed it out to him and called Phyllis over to see. She agreed and told him to change the one so at least they would both be going the same direction. He sheepishly went on to change them, sticking me again and never even said he was sorry or apologized. My thoughts: next time he will not be the one to stick me.

So, what a change from the last post already! What is there to be learned here? I guess I must appreciate the bad with the good, huh Dilbert? So it goes.

86) New Year’s Message

January 2, 2007
Tuesday

El Milagro: Came in at 4 and got stuck by Nurse Kim, who said, “Do you mind if I stick you?” in her quiet, tentative Vietnamese-influenced voice. Kim was the first person who ever cannulated me back in April and we talked about that briefly: “You were the first person to stick me.” “I remember that day. You’re a vet now.” We talked about her baby, who is 6 months old already, and all the baby books she got for Christmas. I told her that I have a friend who is adopting a child from Vietnam and we discussed international adoption for a few minutes. Kim wondered why anyone would adopt from overseas since there are so many babies needing homes here. She says her husband wants her to talk Vietnamese to their baby, but she doesn’t want to. She says it’s too hard to think about speaking Vietnamese now that she speaks English all the time. In her world there is no one to practice her first language with so she is shy about using it with the new baby. She seems to me to want to be completely acculturated and not look back. We in my profession have spent much time encouraging people to hold on to their roots and their non-dominant culture, yet many of the actual people from those cultures are lured by the American Dream. They get sucked into the hypnotic allure of becoming part of the Master Narrative of the dominant class (see Hans’ comment on Post # 26 last July). I didn’t reply in any confrontive or educative way to Nurese Kim’s statement… just accepted it and questioned the ethics of my being the monkey with hands over his ears.

Later: So, it is a new year. 2007! I still catch myself thinking we’re in 1977 once in awhile. 1977; 1997; 2007… they really all feel the same to me. The only markers of change are the growth of the kids and the advent of email. There’s B.E. (before email) and A.E. (after email). What was life like before email? I can hardly remember. How did we do business without email? Did I really call people long distance? I remember FAXing notices out around the state: we had long auto-dialing lists of FAX numbers and that FAX machine was just rattling along at a delirious clip. Since email came along in 91 (to me), I have had more regular contact with my dad. I would hardly ever call him… but since he and I both got AOL email early on, our communications grew to about 1 or 2 times a month! For the first few years we emailed like people would write or converse... back and forth. Now it seems like I back and forth and he only forths. So I usually don't know if he has read my emails or not, but I assume he has... just as I assume he reads this blog.

So when my mind drifts and I get unstuck in time and catch myself wondering briefly if it’s ’77 or ’97, one of the things that I can grab onto is thinking about email. Otherwise, it could be ’77 again, right here in the present. In 1977 I was starting graduate school as a stoned-out West Texas hipboy (some sort of cross between a hippy and cowboy). I had the world by the tail back then; I was confident in my profession as a social worker and starting graduate school for social workers and everything seemed to be going just right. My actions, thoughts, and feelings were all in synch with what I was doing and that made me supremely happy. It was an exciting time in my life and now, looking back on it, I realize it was less of a turning point and more of a bending point. My values and ideas were bent by graduate school in ways that have stayed with me since: really a bending into the profession and the belief system of social work more than a taking on of new theories. Also, graduate school brought together a class of people who I really respected and have been proud to be acquainted with (for the most part) ever since. In many ways, it’s been like riding a Utopian Wave for the past thirty years.

Even Later: ....that’s what I am getting around to saying: that I am grateful and happy to have had such a charmed life. Even in the worst times I have been lucky enough to have good friends who cared for me as much as I cared for them. We were our own cosmic family. We held each other and listened to each other and encouraged each other through our foibles, failures, and our heartbreaks. And we waited together and looked forward to better times and those times have inevitably come. (Am I just going on like this because we finally won the Congress?). In the best times we have partied and celebrated life in as many of the wild and fulfilling ways there are to be imagined. The other night Liz said, looking back over the past year, that it had been a hard one, especially last Spring, and I nodded knowingly, although I am really jumping up and down with joy inside…. just thrilled to continue being here. We (I) have so much to be thankful for that I have a hard time looking back and thinking it was so bad. Plus, Lizzie says I don’t even remember how bad it was (lucky me). It’s much easier for me to look around myself right now and say, “Look what we have! The weather is sunny. I have the afternoon off (It’s actually January 5th in the afternoon as I am writing this home part of this piece) and I can hear two ten-year old silly girls rolling around upstairs amid giggles and the occasional scream. What could be better? Having several of Kay’s cookies left to eat right now… that would be better.”

When I stay completely in the present everything is just fine. Last year maybe it was a rough one, but I can only think about it in the present and right now all is well. Maybe we have pain and heartache and scary, worrisome times to look forward to, but right now, typing on these keys and hearing the girls playing and seeing the dog sniffing around at my feet, all is well. I can bring myself even more into the present when I breathe… and that feels right and perfect too.

I talked to Johnny in Hawaii a little while ago and hearing him report that he got the box, ate Kay’s cookies, played with the pendulum man, and is on his way to Waimea Bay to body surf…. what a great report for a DAD to hear from his wandering son. Actually, just hearing his voice makes it a good day.

So, let’s hope for a new year better than the last one, and let’s remember to appreciate what we have in every moment. Let’s treat others the way we want to be treated. Let’s live and let live. Let’s remember that all the blessings already are.

I can’t help it. I just have to throw out this old hippy wish that I used to write on my holiday cards back in the flower-power days: May the sun shine upon you, all love surround you, and the pure light within you guide your way.

Notes: For newcomers, there is a review of the basic structure of this Blog at Post #47, which you can access by clicking on "August" on the sidebar under "Archives".

85) Alamo Bowl WIN

December 30, 2006
Thursday

El Milagro: Called in for a 1 pm chair today… plenty of time to see some basketball and the Alamo Bowl, where UT meets Iowa for the first time since 1984, I think. Hopefully it won’t be the same result, cause that time they beat our pants off. Herman cannulated me today and he is really the best! On the second needle I didn’t even feel it! He and I talked briefly about my post # 83: he says they don’t decorate for X-mas cause some people might be offended, but agreed that it isn’t very Hispanic. He reported that when El Milagro opened, it was the patients who chose the name. I replied that I thought it would be neat to have eclectic decorations; some Christmas, some Hanukkah, and some Kwanza, all combined throughout the place, with plenty of colored lights around the perimeter.

Watched part of the Mountaineers / Huskies game and then napped and woke up right at the moment the Alamo Bowl was starting. The first half was scary and we dialysis-chair quarterbacks were all moaning and cussing and wincing until Colt got it together and started playing like the star he’s supposed to be. I got through with my session right as UT scored their go-ahead TD on a pass from McCoy to Charles in the third quarter. It was another of those times when I almost wanted to stay at the center to finish watching the game cause they have ESPN and we don’t at home. When I left the center I was pretty sure UT would win since McCoy seemed to have his arm back and the defense was keeping Iowa from doing much. I reluctantly left and tried to put the game out of my head.

Later: The tower is orange! UT won 26 to 24 and all is well on the 40 acres.
Notes: In at 74.8 and out at 71.8 Kgs.

84) Post-Holiday Vacation

December 28, 2006
Thursday

Earlier in the Day: What a great time to be on vacation. Yesterday Lizzie and I spent the first day in months just hanging out at our house… reading, eating, writing our holiday cards, doing just a few chores around the house, and remarking all the way how nice it is to just hang out. Our lives, as everyone’s I think, are so busy, it takes five days to get to one where nothing is planned or has to be accomplished. And even then we are behind on some things: I finished up packing and mailing a Hanukkah/X-mas box to Johnny in Hawaii, with a few small wrapped up things (and some cookies). Mailing boxes to Hawaii is like sending ‘em oversees… You can send them “regular” mail, which will take SIX WEEKS, or special mail, which takes 4 to 6 days and costs twice as much.

About cards: I have always sent out holiday cards to a list of friends and relations. Over the years the list has grown and shrunk but I have always sent out some cards. These cards have reflected in some way either my thoughts or my view of the world. My parents sent out cards and the ones I remember are the ones with holiday pictures of me and my brother in some sort of holiday scene meant to show the recipients how much we’d grown, I suppose. As I moved out of the house and went away to college I remember coming home for Christmas and spending some part of my time looking through all the cards from friends of my parents’, reading their X-mas notes or those catch-you-up letters with holly boughs drawn on the edges. So, naturally, when I moved on with my life I continued the tradition of sending out cards. My first cards were to friends from high school who had moved away from Ft. Bliss with their parents, like Chuck and Robin. These cards were left-overs from my parents’ cards. Then, as I moved out on my own, I sent cards back to EP to my friends, like Dale and Anita. There are some people on my list now that have been on there since the ‘70’s, like Dale and Jan (now); the Parkers (the girls come home for Christmas and my card is at their parent’s house); Lynn, Richard, and Nancy. Mostly these cards were PEACE-related. When I left for graduate school in 1977, I added all my friends (considered family) from my hippie years (Cliff & Skinny and Albert are still there, as is Connie and Edna, and Steve & Nicky). For a number of years I sent Leanin’ Tree cards featuring works by cowboy artists of cowboys coming home at night to their ranch houses all alit with yellow windows and blue snow on the evening ground. And now that email is the preferred system, I have found some other old friends and added them to email + the professional and post-graduate school people. So, over the years there have been lots of people I send cards to, and of course, there are people who send cards to me too. But, me thinks this is changing.

Liz and I were noticing that fewer people are sending cards now-a-days. It seems we used to get lots of cards (enough to string across the ceiling of our living room) and over the years we’ve gotten quite a few less. Now, either we are less popular (a distinct possibility since we’re not as “cool” as we once were - our kids will vouch for this fact), or people are all as late sending out cards as we are, or… people aren’t sending out as many cards as they used to before it cost .39 cents to mail out a card. According to the Census Bureau* Americans will send more than 1.9 billion holiday greeting cards this year. Since there are 300 million people in the US, that’s about 6 cards for each of us. We got about 20 so that means we are more popular than the average bear. And, it still seems we’re getting less than usual. President Bush sent out 1.4 million himself, according to the Washington Post**, but we are'nt on that list. Some people warn that the holidays season is a waste of paper, and thus trees… so, I guess that in the future we will receive less paper cards than now. Some say that all communications in the future will be electronic and that all books will be plastic… as in discs. That’ll be strange… although I find myself sending out more and more electronic cards, or at least brief messages with holiday pics attached. Those are the easy ones. The fun ones include choosing an appropriate card for the recipient, double stick taping a picture inside, adding a brief note about our yearly challenges or awards, and addressing and stamping them to go in the mail. I always like stacking them up and shuffling through the envelopes, picturing the recipients holding them and looking at the postmarks. For a number of years now I haven't had to buy any cards because there are half-used boxes of cards from years passed and I only wonder if anyone recognizes they might get the same card several years in a row.

Today I cut back the roses and lantana in the back herb garden, shoveled up puppy poop, and put a new latch on the back gate, which Shayna and her friend, Maddie, already left open yesterday, letting Chelsea out to bark at invisible marauders in the creek. She didn’t run off but stayed right by the back porch barking her head off. Brave dog.

El Milagro: I’m Reading two new books that I got for gifts: Marion Winik’s new book of essays; Above Us Only Sky, and Michael Walker’s Laurel Canyon: The Inside Story of Rock-and-Roll’s Legendary Neighborhood, which I took and read for an hour or so today. Crystal cannulated me today, quickly and efficiently. I was the last person in on my shift, making me the last person to leave at about 8:20 pm. There’s a new guy (patient) I hadn’t mentioned. He is a slightly portly guy about my age who has tattoos from his head to foot and for awhile after he started I thought he must be some sort of guru or holy man. His bald head has these zig zag stripes from front to back that look reminiscent of Tlingit tattoos. His cheeks have swirls on them and even his nose is tattooed. His chest and arms down to his wrists are tattooed a solid dark navy blue and he has stretched his earlobes so they dangle down about 3 and a half inches. This guy looks like he must have been led to this body art through meditation or some sort of shamanic vision. Several women, who I took to be his devotees visit him and sometimes rub his feet. One of them is quite young and pregnant and the other is older but just as attentive to the man with the tattoos. So fianally I ask Herman what his story is, and it turns out he is a tatoo artist, not a holy man. One of the women is his young wife and the other must be her mother. And I was just about to prostrate myself in front of his chair and ask him for the answer to life’s tribulations. So it goes. (Usually, I think I know the answer anyway.) It’s just that when you see a person like this tattoo guy you think he must know something you don’t.

Notes: On Tuesday, after spending three days in Dallas eating holiday foods, I weighed in at 75.4 and out at 72.1 Kgs., losing over 7 pounds in dialysis! Today I came in at 74.6 and left at 71.8 Kgs.
*Census Bureau retrieved online at: http://www.census.gov/Press-Release/www/releases/archives/facts_for_features_special_ editions/005870.html
**Washington Post retrieved online at: www.washingtonpost.com/wp-dyn/content/article/2005/12/06/AR2005120601900.html