This is the ongoing chronicle of Me, a PKD Patient: Part 1~ April, 2006 until March 5, 2009 on dialysis and blogging my adventures as a participant, and Part 2~ My Kidney Transplant on March 9, 2009 and blogging my adventures in healing and adjusting to Mordechai the Miracle Kidney and integrating this all into my life.
2/28/07
106) Excuses, Excuses
Tuesday
El Milagro: I got to the center slightly late today because I almost got hit on Barton Springs Road by a giant condor!* It’s wingspan was about 43.6 feet, I would guess. It came swooping out of the north and it’s huge talons grasped a lime green VW driving right in front of me. As I saw the giant bird lift the little car in it’s grasp and begin to pull up, I drove my truck right under it’s shadow. As it raised up over the oak trees, a single daisy floated out the driver’s side window and I just caught a glimpse of a blond pony tail as the condor banked and started it’s powerful climb back into the heavens, it's four-wheel prey hanging below. Of course I had to stop to get my breath. And so I was a little late.
Carol cannulated me today. I reported to Herman the Nurse that my initial thoughts about overnight dialysis are written on my blog. That’s about all I care to say for today… as I drift in and out of dreamdom, watching a little brainless boob-tube whenever I come back to consciousness.
Sigh. “And so it goes”, as Billy Pilgrim, the fatalist, would say.
Notes: In at 76.2 and out at 72.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
*Clark, Llewellyn, (nd) The legend of the giant bird. Retrieved online February 2007 from http://sped2work.tripod.com/giantbird.html
2/25/07
105) Considering Passing On and Remembering to Enjoy Every Waking Moment
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
2/21/07
104) Paired Exchanges
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
2/18/07
103) Katie’s Soccer Game
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.
2/16/07
102) Kidney Day & Phosphorous News
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
2/15/07
101) Someone Got a Kidney!
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.
2/11/07
100) The Hundredth Post
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
2/9/07
99) Survivor ~ Fiji
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
2/4/07
98) In Which We Learn About Nathan’s PKD and Shayna’s Defense
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
2/2/07
97) Fredricksburg Trip
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