24) Of Jaguarundi & Heparin

June 29, 2006
Thursday

Morning: I’m in Laredo, waking up in my room at the La Quinta, and wondering if any of the import places on San Bernardo are gonna be open before I leave for Austin. I check out and turn south on San Bernardo and within a few blocks I find a place that has tons of wrought iron stuff, but not exactly what I want. They have what I don’t want for $13, so I know that if they had what I want, it would be the right price. The shops on San Bernardo continue to be a good deal for us who don’t want the hassle of crossing the border. So, I pull out, heading north, and pass about four more shops that aren’t open this early. Soon I’m up to highway speed north of town, cruising through the low scrub brush of South Texas. I put a Bob Wills CD* on and pretend I’m driving a ’55 Olds 88, gliding along with that boaty feeling through the morning heat at 80 miles an hour. The road is mostly straight and its already shimmering out where it meets the horizon. As I cruise along listening to Johnny Gimble’s mandolin plinks on one of the songs, I think about jaguarundi and ocelots. Both were once native to south Texas, although sightings of jaguarondi are few and far between.** For years, while driving through South Texas, I’ve kept watch in the low brush and cactus along the roadways, hoping to catch sight of one of these cats. Now, I remind myself of Peter Matthiessen’s trip to the Himalayas to search for the elusive snow leopard, and then writing about it in a 300 page book that beautifully describes not finding that snow leopard. Maybe the jaguarondi is my snow leopard. And maybe they’re just too difficult to spot when I’m zippin down the road at 80 mph.

I’m writing in a particularly writerly fashion today, probably for Alex. Alex, an almost too serious teen, is my Laredo friend Luis’ son. He met us for dinner last night, along with his dad and his girlfriend (fiancé? I can’t tell which). At some point Luis mentioned that Alex wants to “be a writer” so we talked a bit about writing. I shared the only bit of wisdom I can remember from my creative writing teacher, John Manchip White: “If you want to be a writer, you must write!”. And maybe this wasn’t ever said by White; it may just be my own quote from my visual memory of Mr. White standing properly and somewhat stodgily in front of the class (in 1969?). Sounds like something he’d say, so in my mind it is something he said.

Now as I swing down that last hill into San Antonio, Bob is singing “San Antonio Rose” and I’m not surprised. It’s time to switch over to public radio, and I remember that famous Cindy Walker line as I switch; “When you leave Amarillo; …turn out the lights.”

El Milagro: Herman is cannulating me regularly now; and I like that. He is funny, smart, and very gentle in his sticking behavior. Today, again, staff read out my name on my dialyzer before I even sat down. Today it was Phyllis who read my name to me. I mentioned to Phyllis that I was in Laredo last night, and she said, “that’s why you added so much weight.”, but it was just 2.4 Kg. (5 lbs.). I replied that I had a big steak and lots of water all day while I was presenting to two different groups. Today as I sat there writing on this post, I watched staff as they went about their work with the people being dialysized. They really are very conscientious about their work (I know I’ve said this before) and it is reassuring to notice that they are attentive and careful. They must use hundreds of pairs of latex gloves a day. Even if they leave a patient, pull off their gloves, and then return to the same patient, they put on a new pair. Today, Herman dropped my injection of heparin (a blood thinner because blood tends to clot in the plastic tubing) as he was getting ready to attach it to the tubing. The syringe even had the protective plastic cover over the needle, yet he kicked it away and got a new one. I said, “You could’ve used that one you dropped” and he replied, “Nope. We drop it and it’s history. Don’t want to take any chances.”.

The session was relaxing this afternoon, and I even snoozed a bit. My son, John, picked me up afterwards and we went home to a great fajita dinner with the family. All is well.

Notes: In at 73.1 and out at 70.1
* For the Last Time (1974) Bob Wills & His Texas Playboys, United Artists previewed on AMG online at http://www.allmusic.com/cg/amg.dll?p=amg&sql=10:9898b5m4tsqg
** Davis, W.B. (2000) Cats of Texas. A Texas Parks and Wildlife Publication, available online at www.tpwd.state.tx.us/publications/pwdpubs/media/pwd_lf_w7000_0150.pdf

23) Thursday & Saturday

June 22, 2006
Thursday

El Milagro: Before anyone did anything, Diane and Wilma read my dialyzer and ensured it had my name on it. Ron looked at my chart and my check in weight and reported to me that I was checking in at my “dry” weight, 71.5… so how much did I want them to take off. I replied, “What is your suggestion?”. Ron thought that maybe 1 Kg would be good for today. Diane began to cannulate me today and then called Ron over to fix what she had started because she had trouble tapping the arterial vein. Ron wiggled the needle around and then called Rosie over, who started over and easily hit it painlessly. Rosie maintains that she does so well because she has been doing it for many many years and experience is the key. I told Rosie I wished she always worked afternoons.

Notes: In at 71.5 Kg, and out at 70.5 Kg.

<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
June 24, 2006
Saturday

El Milagro: I was able to get in at 11:30 am today... a good time for being able to watch the entire match between Mexico and Argentina in the World Cup. Jo and Herman separately read off my dialyzer to ensure that it was labled with my name. Herman cannulated me today and did a smooth, painless job of it. Argentina beat Mexico 2 to 1 in overtime and the center was clearly disappointed.

Notes: In at 73.5 Kg, and out at 70.7 Kg.

22) Postively Negative

June 20, 2006
Tuesday

El Milagro: As I walked in to the center today, Marilyn the Social Worker stopped me to report that she has set up my visitor sessions in north Dallas for next month. I said thanks and somewhere in our little conversation asked how much my insurance is paying for these sessions. She replied that she didn¹t know; that insurance companies all have contracts with DaVita and pay different amounts. If I were to pay for it myself, it would cost $480 per session.

As I sat in my chair, Wilma and Eloy came up and one read and spelled my name off my dialyzer and the other verified they heard it before they even checked my blood pressure or listened to my chest. James cannulated my today, and had some difficulty getting a good draw in the arterial vein (the one that goes to the machine). He wiggled it around some and later, Herman came over and messed with it a little. Herman explained that sometimes the needle causes a kind of suction that collapses the vein and slows down the flow. In those cases you wiggle the needle around until it is in the center of the vein, where that collapsing is less likely to happen. While he was sitting there messing with the needle, he reported to me that the blood work from the other day (see Post # 20), when they got me in the wrong chair, was negative. I joked, "No, that¹s positive" and he replied, "I¹m positive it was negative."

Later, Jennifer the Dietician stopped by to give me my latest lab report and to visit. She started by letting me know she had read this blog and found it "interesting". We went over my lab report and basically, all the results are better than last time, although my phosphorous is still too high. She suggested that it is okay to take my binders either before or after meals and that I take my vitamins at bedtime rather than in the morning (since dialysis can flush them). She reminded me that I need to remember to take my sensipar after meals, because that will help my parathyroid balance calcium and phosphorous (see http://www.sensipar.com/consumer/whatIsSHPT.jsp for more information).

Detailed Nutrition Report:
& My albumin (protein) was good; although I need to keep concentrating on getting more protein
& My HCT CALC(HGBX3) is really good (that¹s my red blood cell count btw);
& My IRON SATURATION is good;
& My FERRITIN is good (stored iron);
& My CALCIUM CORRECTED is good;
& My PHOSPHORUS is still high although it is getting better with each report
& My CAxPHOS CORRECTED is also too high. Calcium + Phosphorus = Product. Again: take the binders.

Jennifer and I also discussed briefly the ethical questions surrounding living donors and somehow got into a discussion about the recent violence in New Orleans and the loss of her grandmother¹s house in Katrina.

About 20 minutes before the end of the session, I began having cramps in my legs. Wilma came over and turned the machine off and shot in some fluid (which gets rid of the cramping). So, I actually got done a little early this evening.

Notes: In at 73.5 Kg, and out at 70.7 Kg.

21) We Are All On Stage

June 17, 2006
Saturday

Morning: It seems like kidney donation is "in the news" lately. There¹s the article in Texas Monthly, TV stories on Alonzo Mourning¹s transplant* and playng in the NBA finals, and an article in the current AARP Bulletin** (Winning the Waiting Game) . Maybe I just notice all these things because I¹m in the market for a healthy pink kidney, or maybe its just like having a maroon Toyota T-100 and noticing all the other T-100s on the roads. 'In the News¹ these days is a move (by UNOS***) to increase kidney donation by developing a registry for people who want to donate to a person but aren¹t a match. People on the registry could swap one of their donors for a donor who does match. However, this registry will take action by Congress to be approved. As quoted from Bustler and Hudnall¹s article in the AARP Bulletin, "[In the United States,] we could do as many as 2,000 more kidney transplants a year by swapping donors," says Robert Montgomery, M.D., chief of transplantation at the Johns Hopkins Hospital in Baltimore and the lead author of a recent study that reported on the method's success." UNOS was created under a law that will have to be amended to clarify a swap program ("exchanges between paired donors and patients do not involve money and thus would encourage other transplant centers to create their own paired donation programs.") The bipartisan bill to amend the law is "languishing in a Senate committee, and no one has come forward to sponsor such a bill in the House." And UNOS can¹t begin the registry without such a change to the law.

Although the swap amendment is not yet a reality, many people in search of a kidney turn to their network of friends and the internet to find prospective donors (my Blog is an example). Some officials and experts consider open kidney searching as an unethical approach, suggesting that people who are advertising their need for a kidney are "cheating". I plan to write a summary and opinion on the ethical questions surrounding 'advertising¹ for a kidney in an upcoming post, so keep tuned in for that.

El Milagro: Eloy cannulated me today, doing a smooth poke. As he is working on me, the new guy shows up, seemingly late for work. He is explaining to Herman (the Nursing Administrator) and Herman is showing no emotions nor nodding is head in agreement. He is stone-faced. I mention to Eloy something like, "This new guy seems to be a bit of a problem" to which Eloy chuckles and replies, "You are observant, aren¹t you?". After I settle in, I¹m watching Ghana beat the Czek Republic in a rousing upset. Having the World Cup on TV is a definite benefit of being on dialysis right now, since the games are all over the TV and most of the people at the center are interested in them. Its like being in a strange sports bar.

I have noticed them before: the computer-printed signs on 8 1/2 x 11 paper that say "On Stage". Today I ask Eloy about them, and Herman is within earshot and adds some to Eloy¹s answer. These signs are reminders to the staff that they are being watched, Eloy reports. They are "on stage" and the patients are the audience. The administrators are the watchers. Herman adds that the idea is that everyone is here to 'perform¹ for the patients and that the patients are watching too. We are all watching later as the USA and Italy play to a tie, even though the refereeing was horrible (we watched). USA was lucky because Italy contributed to the tie by scoring the USA¹s only score. Just as the game is over I am done with today¹s session.

Notes: In at 72.5 Kg, and out at 70.5 Kg.

*Barbara Basler and Chad Hudnall, (2006) Winning the waiting game. available online at the AARP Website:
http://www.aarp.org/bulletin/yourhealth/waiting_game.html
** Conrad, C.R. (2006) Say it ain¹t so, Zo. Available online at the Star IQ Website: http://www.stariq.com/Main/Articles/P0001675.HTM
*** United Network for Organ Sharing, on the web at www.unos.org

20) Risky Thursday

June 15, 2006
Thursday

El Milagro: Today I get here and Diane, the mean-looking new guy, and Debbie are around; with Debbie working on the other half of the room. Phyllis is supervising. Debbie points me to my chair and I get ready for my session. She begins to cannulate me and finally calls the supervisor over because she can’t get the return needle set right. Herman comes over and pulls the trocar (needle) and sets another one, further up my arm. Of course, you might recall that these trocars are about the size of a ball-point pen cartridge and somewhat painful when being inserted. It is less painful with his expert insertion than it was with Diane’s jabbing it around trying to set it correctly.

So, then Diane continues to set up my tubes on the machine and I settle down to read my book. About 5 minutes later, she returns and, although I am focused on my reading, I notice that she is unhooking my tubes from the leads on the needles. I ask “What’s up?”, and she replies, “We made a mistake… you got the wrong dialyzer…” About that time Phyllis rushes up and apologizes, saying, “I’m really sorry but we messed up and you’re in the wrong chair. Your chair is the next one over. That’s where we set up your dialyzer.” So, in a somewhat perplexed and becoming worried state, I drag my leads, my blanket, book, and other stuff over one chair and sit back down. I’m thinking, “Okay… so what can this mean. I have been having my blood go through this other guy’s dialyzer. He hasn’t had his blood going though mine since he hasn’t been hooked up yet. Is this bad? What’re my risks…. Let’s see; this center had a 2% fail rate last year… am I about to be a statistic?”

Phyllis is trying to make be feel a little better. She reports, “Well this is not good. This is only the second time in my years here that this has happened on my shift. Even though these dialyzers are cleaned thoroughly and disinfected, and should be really clean before each use….. we still keep each patient’s separate. It should be okay.” And then, almost as if she is thinking to herself, she continues, “We have to write up an incident report, call both doctors tonight to report it to them, draw blood for lab on each of the patients to check for anything….” And then she leans towards me and says quietly, “Neither you or he has Hep C, AIDS, or anything that should cause a problem…” and, “If there were gonna be a problem we’d probably already know… so, I think it’s okay.” So, of course, by then I was charting an upward mounting blood pressure and thinking of calling my friend Eddie, the attorney.

Well, this all settled down into a normal-type dialysis session and later Phyllis was even kidding a little, saying, “Maybe Diane and I will get suspended for a day or two… like a vacation”. As for me: I have this blog in which my life at the dialysis center is documented and although it is just my writings me thinks they may hold up in court. I have to say that Phyllis was truly upset about the mishap and it did take about the whole four hours for her to get her humor back. She apologized a number of times.

Friday afternoon: I’m still kickin’ so I guess everything is okay. I recall that it is only by the grace of god that we still exist.

19) Tedious Tuesday

June 13, 2006
Tuesday

El Milagro: Dianecannulated me today, since Tori is gone. She has poked me before, wayback when I started, before I picked Tori as my usual poker. The centeris not very crowded this afternoon and writing seems to be like a choretoday…. there are times when I think, “Maybe I shouldn’t be creating a post every time I come for dialysis…”.But then I remind myself that part of the goal here is to document theongoing tedious process of dialysis; with all it’s monotony. I’mspending 12 hours a week here and I want you, thereader, to get an idea of the repetitiousness and gloominess that thisplace can instill when I forsake my curiosity and my mission ofreporting the details of dialysis. So, I will continue to write a postfor each session. That's the way I see it.

18) Home Alone

June 10, 2006
Saturday

Morning:Well, Liz and Shayna returned to K-ville yesterday for the third weekendof the folk festival, taking 10 watermelons for Cari, and meeting Margo and Laura to share a motel room. Liz called me mid-evening and said thetheatre was “empty” and as she was talking she saw Bobby Tod just arriving in his truck. So, I have the weekend to myself…. I went by themall after work to spy on my daughter, Katie, working at a Swenson’sIce Cream shop. She didn’t see me for several minutes and I got towatch her charm several customers, smiling at them and making smalltalk as they ordered their frozen treats. The shop was busy; onecustomer after another. I noticed that the other places in the ‘foodcourt’ didn’t seem as busy, even though it was about 5:30 pm. Katielooked like she knew what she was doing, and I could tell she wasmaking folks happy since they all seemed to put a contribution into thetip jar. It was nice to see her working hard and seemingly enjoying it.Finally she noticed me leaning against a pillar and motioned me over tovisit briefly until the next customer showed up.

I finally mowedthe lawn this morning, after weeks of letting it grow while we were toobusy to do lawn work. When I called El Milagro, they reported that theywon’t have an open chair until about 2:00 pm, much later than I usuallygo in on Saturdays.

El Milagro: The place is socrowded today that I couldn't get in until 2:30 pm. When I got herenobody seemed to know why it is so crowded… and that makes me wonderabout how they keep up with their scheduling. Sometimes it seems thatthis place is very organized and sometimes it seems that it is chaoticunder the surface of looking organized. But, maybe it is organizedunder the surface of seeming chaotic. More observations may shed lighton this possible paradox.

Tori cannulated me today, and I foundout it is his last day here. He has taken a job as a microbiologistwith the state, in some sort of lab. I wished him well, and shared withhim that now I’ll have to find another cannulator, since Rosie doesn’tusually work on my days. He did a good job in his last cannulation ofJack… and I thanked him. Although every chair was occupied when I gothere, about five or six people left within the first 40 minutes after Istarted. Today I am beside a man who is coughing incessantly and Irealize that the woman who says “Help” is here too. (I can’t imagine there’s more than one person who says “Help”.)Rosie, Connie, James, and Debbie are here working today so it is afestive group of staff. Actually, they aren’t as festive as usual, butI can’t think of a better word to describe this crew, so we’ll callthem ‘festive’.

As I’m sitting here I have soccer on the TV:Argentina v.s. Costa de Marfil (Ivory Coast) on Univision, watchingCrespo score beautifully in the 24th minute. I wish more of the worldcup games were on the main TV stations rather than the sportsnetworks…. although I can probably see quite a bit of the matches here(they have tons of channels on their TV’s). When the game announcersare rambling on in Spanish about the game and not yelling for someincredible play, I’m reading Now Discover Your Strengthsby Backinham and Clifton*. This book takes the strengths-based approachinto the business world, suggesting that when companies focus on theirworkers’ strengths (talents, skills, and experience) rather thantraining to plug the gaps in workers’ competencies, everything worksbetter.

Towards the end of my session today, Carol brought Katieby to see the center. Even though the place had been really crowded, bythe time they got here, there were only two of us left. So, to them, Iimagine it looked like a very quiet and relaxing place to be. Eloy andTori both spent some time explaining kidney dialysis to them. AfterCarol left, and I got de-cannulated and patched up, Katie and I wentout to dinner together at El Rey. She caught me up on her adventures inthe world of work, her boyfriend’s travels to Chicago and Corpus,what’s going on with Marie, and her thoughts about college. Marie’sapplying to Sul Ross and Katie is interested in U.T. San Antonio and A& M Corpus.

Late into the evening, Lizzie called from Kerrville and reported that Trout Fishing**was great and they had an long and fun day at the festival. Although Imissed KFF, I really enjoyed working in the yard today and look forwardto planting some Salvia Coccinea Coral Nymph tomorrow morning.

* Backingham, M. & Clifton, D.O. (2001) Now, discover your strengths. New York: The Free Press.
** See Trout Fishing in America’s website at http://www.troutmusic.com/

17) Transplant Options

June 8, 2006
Thursday

Transplant Possibilities: When I was approved for a kidney transplant by the Austin Kidney Transplant Program back in January, I was put on a list of people awaiting a cadaver kidney. This list is a central Texas list, including the area around Austin, San Antonio, and Temple. They say the list is about four years long. There are other lists that I could get on in Houston, Dallas, etc., but if I got a kidney from one of those lists I would have to go to those cities for the transplant operation and the recuperation process (about 8 weeks). Aside from a cadaver kidney, the only other option is to get one from a live donor; someone who decides to give a kidney to a person on the transplant list.

Over the past few months, several friends have inquired about how they could go about donating a kidney to me. One of them had an incompatible blood type and the other is still waiting to find out what blood type they are. There are a number of criteria involved in becoming a kidney donor, including age (generally a donor must be between 25 and 49); blood type (for donating to me that would be type A or O); cross-match testing (antigen compatibility has to be established); and generally the donor must be in good health (no heart problems, diabetes, weight problems, high blood pressure, etc.). There is a good article on donating kidneys, entitled Who Can be a Living Donor? (see Links on the sidebar). I would be happily honored to discuss kidney donation with anyone who is interested. One reason I started this blog was to get the word out about my situation and to broadcast my need for a new kidney. Back in Insight* we used to say, "All the blessings already are." and I know that it is also helpful to ask the universe for what you want.

El Milagro: At the dialysis center I feel like I'm back to normal… I’m here for the afternoon session, and the staff all act happy to see me back, and are asking if I plan to stay with the afternoons. Tori cannulated me and asked if I am back for good. I tell him “Yes, I like the late afternoon sessions better than the early morning sessions cause a lot of the time I was wiped out at work”. Jennifer the Dietician visits and reports on my blood work from Monday; it was for a blood count and mine is high! (That’s good) I missed lab work on Tuesday so she advised that I have a week’s reprieve to work on getting my phosphorous levels down some more. I told her I’ve been taking my binders.

While sitting there, I am thinking about Billy Preston dying earlier this week, after years of kidney problems and a transplant in 2002. I remember how crazy I was about his contributions (keyboards on Get Back, etc.) on Let it Be way back in 1970. And, of course, he was a Texan from Houston, which I never knew until reading his obituary. You can read more about Billy Preston at his website, http://www.billypreston.net/

Notes: Weighed in at 73.9 Kg. and out at 71.6.

*Insight Transformational Seminars: online at http://www.insightseminars.org/

16) Sessions and Sets

Monday

El Milagro: "If things are going to go wrong, they go wrong on Mondays" Monica said, as she seated me over an hour late this afternoon. Who knows exactly what happened to make them over an hour late? In the waiting room with the other people waiting for their chairs, there were rumors about someone going to the hospital and that slowing things down. According to Wilma and Diane it was a combination of low staffing, lab day, setting me up in the wrong chair, and running late all day. I settled in for a long session, knowing it would probably by 9 before I got home.

What with the folk festival and coming for dialysis at all kinds of strange times, I haven’t been settled enough to keep up with these posts. So, here are some impressions from the last three sessions.

1) Going in for the early morning sessions isn’t going to work for me. Mostly, I’ve been wiped out afterwards, making it nearly impossible to focus enough to work at my job. I think I need a good rest after dialysis. When I go in the afternoon and can hang out relaxing at home afterwards, I feel great the next day.

2) Phyllis and I have talked about my feeling wiped out and she agrees that some people just need time to rest afterwards. She said that most working people come in the afternoons, which I swear is the exact opposite of what someone said when I started dialysis.

3) The guy who brings in the breakfast tacos for the early morning dialysis patients isn’t that good a cook: his chorizo & egg tacos lack taste and have the consistency of mush.

4) It was nice to settle in for a good nap at dialysis in the morning. I don’t think I’d ever be able to actually work on the lap top there in the mornings, although I have yet to take the lap top in the afternoons either.

So, I'm going back to TTS sessions at 3 pm and that's that.

Kerrville Folk Festival Report: I was feeling much better for the most part at the festival this year. Last year I missed two of the three weekends because of a low blood count. Many of the people who know my situation at the festival mentioned that I had more color in my face this year and looked generally healthier. I had written up some tags with my blog address so I could give them out to people that I only see at the festival; adding readers to these posts. Basically, I really was happy that I had switched my dialysis schedule around so I could go for two weekends, and although Lizzie would like to go again this weekend, I think I’ll be getting back on my regular schedule and have a weekend at home for a change. The highlights of the 35th KFF for me were hearing sets of Matt Anderson, Billy Jonas, Guy Clark, Thad Beckman, Terri Hendrix, and Ray Wiley Hubbard. It was a blues festival this year, it seems. Also, as usual, I enjoyed the camaraderie of working on the kitchen krew with my friends Merriesa and Rick, Andrea, Brian, Cari, and Lizzie. I’ll be back.

NOTE: From the June, 2006 Texas Monthly*
Here’s Looking at You, Kidney
How and why I became an organ donor— and how I kept people from talking me out of it.
by Virginia Postrel
UNTIL LAST NOVEMBER, I’D NEVER THOUGHT about being a kidney donor. I hadn’t known anyone with kidney disease, and like most people, I hadn’t filled out an organ donation form when I’d gotten my driver’s license. I’d never even donated blood. That all changed after I ran into a friend and asked, “How’s Sally?” I got an unexpected answer: “She’s . . . all right,” in a tone that made it clear she was most definitely not all right.
(Read the rest in the curent Texas Monthly!)

* http://www.texasmonthly.com/preview/2006-06-01/postrel

15) Welcome Home

May 26, 2006
Friday

El Milagro: Got in early (5:30 ish) and hooked up and went back to sleep. So, I’m sleeping comfortably and this voice breaks into my sleep: “You need to take you blood pressure medication!” Am I dreaming? My sleepy fuzzy brain is trying to figure this out… cause I’ve been doing fine in the BP department. Then I hear again, louder, “Do you want to stroke out? You’re going to stroke out and end up in a nursing home… is that what you want?”. The voice is at the back of my head… somewhat familiar. No, it’s behind my head and loud enough to wake me up… and very familiar.

So, I lay there and the voice calms down and moves away… but now I’m awake, with my eyes closed, wondering if I’ll go back to sleep. And, it comes clear as I lay there; its Charlie Moritz doing rounds. Soon he gets to me and kicks my chair. I reply, “Who let you out so early?” He takes little interest in me but the dietician reminds us that my phosphorus is still high and they consider briefly changing my binder before the move on to the next victim.

The rest of the day: After I get back home at about 10:30, I get busy watering the plants and doing all the chores that need doing before we leave for Kerrville, and at some point I get very dizzy and feel nauseous. I have to lie down. DAMN! We are in a hurry to get out of town and I can’t stand up! I lie down and actually go to sleep while Liz picks up 30 watermelons and packs the truck. At about 3 in the afternoon I am finally up and ready to go….. 3 hours later than I wanted to go.

Driving through the hill country down to Kerrville is a trip that takes just about the right amount of time to feel like we’re getting away and yet not long enough to get tired of the drive. The country is green and beautiful with lots of yellow, orange, and purple wild flowers all the way. The blue bonnets didn’t really do well this year, but all else is wildly colourful. We pull into the familiar bustle of Quiet Valley Ranch at about 5 with the watermelons and drop them off at the kitchen and drive back to the staff campground to set up our campsite. I’m still feeling a little weak, but am happy to be “home”, saying “Hi” to festival family people I only see once a year here at the ranch. We quickly set up our campsite and I get our red seating pad and get out to the theatre to save out usual seats 7 rows from the front on the left isle. We’ve sat in the same place for years and as people come into the theatre, we say “HI” and everyone is excited to be back and ready for 18 days of the best songwriters in the country to entertain us with their most recent works. It really feels like we’re back ‘home’ because this is where our hearts are and where we all forget about our work-a-day lives and return to an easier lifestyle that only includes minimal trappings of the real world… it’s like returning to the times before the responsibilities of mortgages and careers.

As I sit there waiting for the theatre to fill up and the music to begin, I am overwhelmingly happy to be alive.

14) The Early Shift

Tuesday

El Milagro: I got here at 5:30 am! There were already a number of people cannulated and the place was jumping. All the nurses and techs were busy with patients and I had to wait about 20 minutes for Debbie to start on me. Now, this was a bit annoying, since I said I¹d be at work by 10 am. I¹m sitting here realizing that when I come in for dialysis in the afternoon, it doesn¹t really matter how long the whole process takes, since I¹m just going home afterwards. Coming in before work is already making me feel the anxiety of having to get to work by a certain time, so let¹s get this thing going. Debbie finished cannulating me at 5:50, adding 20 minutes to my 4 hours.

It seemed that every single thing that could happen to slow the process down happened today. I was able to fall back asleep and slept until about 8:30. Around 9 I started feeling very clammy and faint and James came over and said my blood pressure was way down (75/56) and he began giving me saline to raise it. That was another 20 minutes added to my time. I finished the session and James pulled the needles and put gauze on the holes for me to hold until they began to clot. I held them for about seven minutes, and then Debbie came by to tape them up. She peeked at the arterial hole and it spurted blood about a foot and a half, so she clamped it and that added another 8 minutes or so. This added time wouldn't worry me if I was going home, but like I said, I still have my workday ahead of me.

Data Notes: In @ 70.6 and out @ 70.1

The Rest of the Day: By the time I got to work it was 11:00 am. Boss Kim said she was worried about what had happened to me and we discussed how variable my arrival times may be with this new schedule. I felt okay for most of the day at work, getting a little droopy towards the end of the day. Late in the afternoon my fuzzy brain got fuzzier. When my brain is fuzzy, it’s difficult to recollect and summon up at will specific small pieces of data. If I ask my brain to find the info, it’s like a slow librarian. She comes back with the data sometime in the future, when I’ve feasibly forgotten why I wanted it. The larger concepts and ideas are accessible, but the minutiae is off somewhere in a dense fog. So, when this phenomenon is occurring I can work successfully on writing or developing projects, but if the work has to do with detail work, I am very fuzzy. The fog is good for day dreaming or creatively imagining things but not much good for left-brain activities. That’s the way it seems to me.

Once I got home after work, I watched the news and then fell asleep for a 3-hour nap.

This experiment of going in for dialysis early in the morning, at first measure, is seeming to be too much for me. But, I have to do it on Thursday and Friday so I¹ll get more data points in order to see if it¹s just a time adjustment problem. I¹m going on Friday instead of Saturday this week because we are heading down to Kerrville on Friday for the first weekend of the Kerrville Folk Festival*.

*Online at http://www.kerrvillefolkfestival.com/

13) I hate Change

Saturday

Synopsis Since Thursday: Liz and I discussed possibly changing to an early morning dialysis session. Kim (my boss) and I discussed the possible change. Theresa (my ED) and I discussed the possible change. Should I change? Should I stick with the way things are? Will the change be better for home? Will it be better for work? Will it be better for me? For Liz? For Shayna? What will be the benefit of changing my dialysis schedule? (According to the I Ching*, Decline [36] changing to Grace [22]). "Arghhhhhh!"

"I HATE CHANGE!" Change used to be cool, exciting, new & different, mysterious, adventuresome, and fun. But that was 35 years ago when I was a vagabond minstrel of “the Age of Aquarius” and the exploration of inner space, the final frontier, was our 5 year mission; to explore strange new worlds, create new tribes, and boldly go where no straight person had gone before. But now I’m way retired and love the stability of my little job and my little home and my little family. I’m like a hairy-footed hobbit, happy in my little hobbit house. “No need to change anything” says my fuzzy brain.

Back to reality: Even though we say in systems thought that 'change is constant', I don’t have to like it! So even the change of schedule of my dialysis is a problem for my fuzzy brain. I have to think about all the pro’s and con’s of it. If I change, it’ll be better for my work (Kim & I figured out), since I will have more ability to travel out of town. It’ll be nicer at home cause I can always be here in the early evening hours for dinner and family time (although Liz & I both know that is no guarantee we’ll eat before 8 anyway). On the down side, what about those times when Liz is out of town and I have to get Shayna to school? It’s much easier to get help with picking Shayna up in the afternoon than dropping her off in the morning. And, of course there is the consideration: do I really want to get up at 4:45 am three days a week? I got up at 5:30 for all the years my son had to catch a bus to his school across town and actually liked it! Maybe I’ll like it again.

El Milagro: Rosie cannulated me again today, again without much pain. The place was busier than usual, so I couldn’t come in until noon. I talked to Phyllis about my thoughts about changing to the early session and she offered that on those occasions when I can’t come in early, it is always easier to switch to a late session than it is to switch from a late session to an early session. That convinced me and I told her to move my name (on the big board) to the early session. She replied that I’ll start next Tuesday.

Data Notes: In @ 73.5 Kg and out @ 70.7 Kg.

*Wing, R. L. (2001) The I Ching workbook. New York: Broadway Books.

12) The Early Morning Edition

Thursday

El Milagro: When I got here this morning at 5:40 am, the place was already jumping. I got hooked up in chair #17 by Rosie and almost immediately went back to sleep. (I¹m on first shift today so I could present at a TCFV conference this afternoon.) When I woke up at 9:15 Rosie was checking my machine and I ventured, "This would be perfect if there was coffee and breakfast served now". She laughingly replied, "You slept through the taco man. He comes every morning." Darn!

Upon observation (after waking up), I notice there are lots of men here on this first morning shift; and at least 7 of them could be workers. I only see a few women. Every chair is occupied. Phyllis stops by and, when I ask about her being here early, she tells me she gets here before 5:30 am and works until 5:30 pm. three days a week. Rosie was my tech today and she stuck me further up my arm than I¹ve ever been stuck: it was painless (without numbing medicine) even now, 3 hours later.

At the end of my session, as Rosie was de-cannulating me and I was tightly holding the gauze over my punctures, she mentioned that this chair (on first shift) is open and it could be mine if I want it. She continued that if I like it here early I should tell them I want this chair. I asked her hesitantly, "What happened to the person who left this chair? Did they die?". She replied with a chuckle, "So, you don¹t want a chair with bad mojo, huh? Well, the woman who sat here transferred to another shift... and we¹re happy she¹s gone cause she was trouble. You¹re no trouble so we¹d like to have you sitting here." Aha! She has her own agenda: getting easy old me into her section. I replied I would check it with work and Liz and get back to them. By the time I left, they had told Phyllis and she had stopped by to say it is okay with her if I change shifts. So, something new to consider after I've only been here 5 weeks. Originally staff had said that first session chairs hardly ever open up unless someone dies.

Data Notes: In @ 72.7 Kg and out @ 70.5 Kg.

11) Two Posts Today...

Saturday (5/13)

El Milagro: Today Michelle cannulated me and did a painless job, although the nurse had to come over later and re-stick me because the outgoing needle was “bottoming out”. With my minimal knowledge, I think bottoming out is where the needle is resting against the inside surface of the vein and thereby not drawing blood as well as it can. So, the nurse put in another needle and capped off the first one. She said they don’t like to withdraw it after I have received my Heparin, because it thins the blood and I would bleed too much if they took that needle out. So they just close the valve on it and tape it down until I’m done for the session.

Michelle is on dialysis too, which I didn’t even notice until she said my fistula looks like hers. Both were done by Dr. Settle, who seems to be the reigning artist of fistulas in Austin. Michelle does her dialysis at home with a machine she got through Medicare. But, she has to dialysize every night for nine hours…. I guess because the machine is much slower than these Cadillac’s we have here. Michelle has been on dialysis for 4 years now, and started because her Lupus worsened.

So, now I have 3 trocars in me and the last one was put in without the local anesthetic I usually get. Makes me feel like a real man! I was thinking recently about trocars, calling them turoks in my fuzzy brain. It seems to me that trocar sounds like an instrument that a Klingon would use. But now that I think more clearly, I guess ‘turok’ would be Klingon for truck.

Today there is a patient here somewhere in the maze who keeps saying “Help” in a faint, forsaken voice. The voice gives no hint of a gender; just a sense of desolation and weakness. These feeble “Help’s” emanate from some point in the room that I can’t readily see, so I can’t pin them to a person. But, it is curious that none of the staff seem to be going to the aid of the patient who says help. Finally, after about 20 “Helps” I hear a staff say, “Sandra; you don’t need anything.”, and I can’t see the staff either. A few minutes later the unidentified staff says, “You keep saying the same thing over and over Sandra.”. Sandra replies with a bit more life in her voice, “Shut up!”. Afterwards, it seems Sandra’s “helps” diminish although when I finally see her being rolled to her waiting son (my guess) in her wheelchair, she is again saying “Help……..Help……..Help” and her relative kindly says, “It’s okay. I’m taking you home now.” I, as many other patients I'm sure, was relieved that Sandra was being taken home by someone who loves her.

Notes: Weighed in at 71.9 and out at 71.3 Kg.

<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>

Tuesday (5/16)

El Milagro: As I was being cannulated by Kim and Tori today, Jennifer the Dietician was going over my “Detailed Nutrition” report (results of latest blood work). Kim and Tori were working together because Kim’s first attempt at sticking me found a clot in the needle, so Tori stepped in to find a better spot. According to Jennifer in reviewing my report:

& My albumin (protein) was good;
& My HCT CALC(HGBX3) is really good (that’s my red blood cell count btw);

& My IRON SATURATION is good;
& My FERRITIN is good (stored iron);
& My CALCIUM CORRECTED is good;
6 My PHOSPHORUS is very high and I must lower it by taking my binders and eating low phosphorus foods;
6 My CAxPHOS CORRECTED is also too high. Calcium + Phosphorus = Product. Again… take the binders.

So, Jennifer and I discussed my taking binders with every single morsel I put in my mouth: 5 with meals, 4 with ½ meals, 3 with snacks.

The only other thing of note was that I forgot my Dialysis Bag today so I had no earphones, no TV clicker, and no blanket. I had to be satisfied with a recent issue of Family Therapy Networker and my note pad…. but I didn’t really feel like writing. So, after reading awhile, I kinda laid there in semi-consciousness, listening to the hum of my bionic machine and the other various noises of a dialysis center.

Notes: In at 73.9 Kg. & out at 71.6 Kg.

10) Of Cannulation & Parathyroid Glands

Thursday

El Milagro: I noticed on the way over here (west side of IH 35 South of Oltorf), driving through Zilker Park, just how brilliant green Austin is after all the rain we¹ve had. It is a perfect afternoon for doing something active outside. So, I breathe in the crisp air deeply for a few minutes while walking across the parking lot of my dialysis center. Kim again did a beautiful job of sticking me (the medical term is cannulation: the process of inserting a cannula, which is a flexible tube inserted to drain or administer fluid, ending with a trocar, a sharp pointed surgical instrument; i.e. needle). Phyllis reminded me of the term, spelled it, and exclaimed, “You’ve been cannulated, Jack” A few minutes later, as I am looking around doing my initial observation, I notice that Moritz is here. I remember to ask him if AB+ is a match for A+ for a kidney. Today we have 12 patients and 7 staff. Moritz is making his ‘rounds¹ like a high priest of the dialysis inquisition, and stops and as he watches me writing this he teases me about not having my laptop; "So, I thought you were the big computer guy. Where¹s your laptop?" to which I make some lame excuse like, "Since my infiltration I am not yet ready to move my arm enough to type but I¹m gonna bring it someday." Moritz and Ron the Nurse and Jennifer the Dietician discuss my recent blood work and Moritz says to put me on a new med for my overactive parathyroid gland. They also discuss my phosphorus still being high and ask if I am taking my binders at each meal, to which I say a confident "Yes!". They nod their heads thoughtfully and move on to their next victim, Jennifer saying over her shoulder, “I’ll be back”. Later Jennifer the dietician returns to more fully explain my para-thyroid situation, saying most of what I have copied below.

Parathyroid Glands*: There are four parathyroid glands which are normally the size and shape of a grain of rice. Occasionally they can be as large as a pea and still be normal. The four parathyroids are shown in this picture as the mustard yellow glands behind the pink thyroid gland. Normal parathyroid glands are the color of spicy yellow mustard. The ONLY purpose of the parathyroid glands is to regulate the calcium level in our bodies within a very narrow range so that the nervous and muscular systems can function properly. This is all they do. They measure the amount of calcium in the blood every minute of every day... and if the calcium levels go down a little bit, the parathyroid glands recognize it and make parathyroid hormone (PTH) which goes to the bones and takes some calcium out (makes a withdrawal from the calcium vault) and puts it into the blood. When the calcium in the blood is high enough, then the parathyroids shut down and stop making PTH. The single major disease of parathyroid glands is overactivity of one or more of the parathyroids which make too much parathyroid hormone causing a potentially serious calcium imbalance (too high calcium in the blood). This is called hyperparathyroidism. ….It is possible for a person to take too much vitamin D so that they absorb too much calcium from their diet and hold on to too much calcium in their kidneys... and their calcium goes high.

After rounds, Moritz was working on the computer for awhile, but then, before he left he completed another sweep of the patients, having brief, more sociable conversations with them as he goes. He has an optimistic bedside manner as he explains medications, encourages people to eat a healthy diet (in Spanish), and kids with those who can. With Mr. Animado Moritz jokes about his coming in late, saying “You don’t work” when he says he is late because of working. As usual, Mr Animado is in good and noisy spirits. Shortly afterwards, I look around and Moritz is gone. Later in the session, Ron the Nurse visits with Mr. Animado, asking him if they can find a better center for him to go to and by the end of the evening, Mr. Animado is transferred to another center. I’m not sure that Mr. Animado wanted that…. it seems the Milagro staff had had it with his coming in late. Maybe there is more to this story; I just report it from my perspective. Obladi Oblada life goes on.

Weighed in at 72.2 Kg and out at 71.4 Kg

*Norman Endocrine Surgery Clinic (2006) Introduction to parathyroid glands. Retrieved online May 12 from http://www.parathyroid.com/parathyroid.htm

9) Dialysis & Sleep

Tuesday

El Milagro: Just another dialysis session... boring today. Weighed in at 72.9 and out at 72.0.

Later: After dialysis, when I get home, I am usually somewhat drained. I get home, eat dinner, and then generally "rest on the couch", which means I watch some TV or take a nap. Couch-napping is a family tradition in the Nowicki family. When I was a child my dad would frequently come home from work, eat dinner, and sack out on the couch in front of the TV. My son sacks out on the couch when he is here and has nowhere to go. My brother used to sack out and probably still does.

So, anyway, I feel kinda drained when I get home. The night after a dialysis session I sleep better than I have in years! For the last few months before I started dialysis I was having terrible sleep. I couldn¹t get to sleep early; I woke up three or four times to urinate; and I had bad fidgety legs that got me up and wandering around the house in the dark. After dialysis I sleep like a bear in the dead of winter and have vivid dreams. In the morning I awaken groggily and after my coffee I begin to feel great. Feeling great is a blessing!

8) Of Cybernetics, Morphic Fields, & AV Fistulas

Saturday

On Saturdays I am supposed to call in to the center in the morning to see if they can fit me in early. Today I called and Kim answered the phone. I identified myself and she asked when I’d like to come in. I replied, “10:30” and I heard Phyllis in the background saying “11. Tell him he’s got a deal for 11.”. I like this idea of flexibility on the weekend. Today I’ll get outa there by 3 in the afternoon!

On another note, I got an email from my friend Martha on the 2nd. In response to my blog, she said, “I’m sending you loads of Light and will check your blog often”. The more people that know of my situation, the more people there are hoping, praying, visualizing, and desiring my healing and continuation in life. This is a good reason to write this blog and be open and loquacious about my dis-ease and my medical situation. I have friends who, when we get together, we share our health progress and regress with each other as a matter of friendship. However, some people want to keep their medical situations private and are reluctant to discuss them with anyone else. I also have friends like that. They have their health conditions and won’t discuss them openly for some reason that I don’t really comprehend. It may be that they simply don’t see our friendship as being close enough to share those things. Or, they may be in some form of denial.

In my trainings I frequently say “Denial is a river in Egypt!” (allegedly from Mark Twain) to suggest that denial doesn’t really exist. It’s preferable for us to think of it as ‘suppression’, because suppression is a choice of the beholder. When people choose to put information about their situation out into the world, it helps them to accept their situation as well as to receive support and focused healing energy from their friends (system) and humanity (larger system).

When we understand ‘humanity’ as a system, and we apply concepts from cybernetics, like recursion (reciprocal causality), autopoiesis (self-generation), and morpogenisis (growth of the system), we find that the larger system influences the individual just as the individual impacts the larger system (see Ray Becvar’s books*). In the larger system there is a collective memory which we, as humans can ‘tune in’ to. This collective memory exists as morphic fields according to Rupert Sheldrake**. These morphic fields are “non-material regions of influence extending in space and continuing in time. They are localized within and around the systems they organize”. So, the information we put out into the world (larger system) about our health situation is available for human consumption and consideration (hope, prayer, visualizing, creation, etc.) and these considerations recursively influence the morphic fields such that they have a postive resonance (impact) on all parts of the individual system.

That’s the way I see it! Thanks Martha for sending in the Light.

* Becvar, D.S. & R.J. (1982) Systems theory & family therapy: A primer. University Press of America: Lanham, MD.
** Sheldrake, R. (1988) The presence of the past: Morphic resonance and the habits of nature. Times Books: New York.

El Milagro: James hooked me up this morning and it was interesting to see how each new tech that prepares me has their own way of doing this process. I mentioned to James that I think I am supposed to still be on small needles (he checked the chart and agreed) so he decided to use size 17 needles. He explained that they use smaller needles until my fistula toughens up. He also set a tourniquet because my vein seemed to be on the verge of collapsing today (who knows why that happens?).

Today I am seated on the periphery of the pattern of chairs, in a corner where it appears they decided at some point to put an extra chair to get just one more person into the mix. This chair faces the back of the nurses command center; so I can see what they are doing behind the desk. When I was a kid, I always used to wonder how life was behind the counter when I went into stores, restaurants, and other facilities. Now I feel a bit of nostalgic excitement at the chance to see behind the counter. Behind the counter right now are four nurses (Phyllis, Ron, Connie, and Kim). Kim is transferring info from patient’s daily logs onto a computer. Ron seems to be preparing doses of the various injections patients machines get during their dialysis. He fills the hypodermic needles, checks them carefully against a form, ensures they have no air in them, and then puts them in a rack to be distributed around the center. Only the nurses give these shots to the tubes connected to the patients. According to Connie, the shots I get each time are Venofor (iron), Epogen (Procrit), and Zemplar (for my bones).

Throughout my session today, my machine frequently beeped crazily and someone had to come quell the beeping and adjust the flow rate to keep my vein from collapsing. After several attempts by Tori at readjusting the needle from my fistula to the machine. Tori shared with me that James should have used size 16 needles, which are the ones I formerly used before Tori gave me size 15 last time. He concluded that I should tell the tech to use size 16 for the time being. Finally Connie solved the flow problem by putting extra gauze under the needle to push it down into the middle of the vein because she thought it was resting against the inside wall of the vein, thus interrupting good blood flow. There were no further difficulties and I got out of there by 4:15 pm.

Data Notes: I weighed in at 72.3 Kg. and out at 70.6 Kg. (1Kg. = 2.2 lbs.).

Definitions: I think I offered several posts ago to put in some information about my fistula that buzzes for the uninitiated who touch it.

AV fistula*:

AV (arteriovenous) fistulas are recognized as the preferred access method. To create a fistula, a vascular surgeon joins an artery and a vein together through anastomosis. Since this bypasses the capillaries, blood flows at a very high rate through the fistula. One can feel this by placing one's finger over a mature fistula. This is called feeling for "thrill", and feels like a distinct 'buzzing' feeling over the fistula. Fistulas are usually created in the non-dominant arm, and may be situated on the hand (the 'snuffbox' fistula'), the forearm (usually a radiocephalic fistula, in which the radial artery is anastomosed to the cephalic vein) or the elbow (usually a brachiocephalic fistula, where the brachial artery is anastomosed to the cephalic vein). A fistula will take a number of weeks to mature, on average perhaps 4-6 weeks. During treatment, two needles are inserted into the fistula in opposite directions, one to draw blood and one to return it.

The advantages of AV fistula use are lower infection rates,as there is no foreign material involved in their formation, higher blood flow rates (which translates to more effective dialysis), and a lower incidence of thrombosis. The complications are few, but if a fistula has a very high flow in it, and the vasculature that supplies the rest of the limb is poor, then a steal syndrome can occur, where blood entering the limb is drawn into the fistula and returned back to the general circulation without entering the capillaries of the limb. This results in cold extremities of that limb, cramping pains, and if severe, tissue damage.

* Answers.com (2006) Retrieved online May 7th from http://www.answers.com/topic/hemodialysis?hl=fistula&hl=vein

7) It Started with Synthroid

Thursday

El Milagro: Tory hooked me up with larger needles today, so it was a bit painful getting stuck. While he was jabbing me, I wondered aloud why it hurt and was it larger needles, to which he replied, “Oh. I thought you were up to larger needles already”. Later when he saw me making these notes, he offered that his name is spelled with an ‘i’ because in Japanese Tori means ‘bird’. The things that we learn when we listen to our environment!

As Tori was finishing up taping my tubes down so I don’t pull them around, Marilyn and Phyllis were talking to me about finalizing my plans for Memorial Day weekend. Their suggestion, since the center in Kerrville isn’t open on Saturdays, is that I come in here early Friday (5:30 – 9:30 am) and then back again at 3:30 pm on Monday. So, I’ll have my regular dialysis on Thursday, then again on Friday morning and then skip two days until Monday. Then I skip Tuesday and go back on the next Thursday. I am sure this paragraph is captivating for most readers… as it reflects the mundane scheduling work that we must all go through in our busy lives. As we read it, we are probably all saying, “Ah yes, I can totally identify with this minutiae”.

There are about 6 patients here right now, and 7 staff. The staff kind of circulate through the place, checking on the progress of the machines and writing some numbers on the patients daily log which is kept on a clipboard on top of the machine. I am sure there is a staff responsible for each chair, but as they circulate, it seems they all check the machines and write on the log. Sometime during each time I am there, each staff will come up and greet me formally and ask how I am doing today. I get the idea they are hyper cautious and that makes me feel good.

There is an older, non-ambulatory Hispanic woman who always finishes up her session sometime after I arrive. Today she is in a chair directly across from me, so I get a good view of her. She is always accompanied by her adult daughter (I believe), who sits with her devotedly throughout her dialysis, giving her snacks, adjusting her covers, shifting her around in her chair to make her more comfortable, talking to her, and being her translator with the English-speaking-only staff. The younger woman is deferential with the older woman and yet she also seems to have great influence on the older woman. This seems to be a symbiotic relationship they have worked out over a long period of time. The older woman seems resigned to her fate but she isn’t going down quietly. She grumbles, in a whispering voice, her complaints and objections to the younger woman and the younger woman works to calm them. This scene reminds me of all that I’ve read about the baby-boomers beginning to care for their parents and having to adjust their typical communication styles to continue the parent/child dialogue.

As a formerly ‘healthy’ person who had little contact with the medical establishment, it is quite perplexing to be so concerned now with my health. For years I only had one doctor and I usually only saw him for physicals and the annual bout with cedar fever. When I took meds it was limited to a specific condition and didn’t last long. And then, in my forties I developed a lazy thyroid and began my slide into the world of pharmaceuticals. It started with Synthroid! At first it was difficult to remember taking my daily synthroid. After meeting Moritz, in ’98 I had to buy one of those plastic pill boxes (that I associate with ‘old’ people) for my 6 daily doses. By the time I started dialysis I was up to 14 different pills a day and thinking of myself as an ‘old’ person. Now, fortunately the machine helps with my meds and I am back down to 9. Another advantage of being on dialysis!

6) Phosphorus News

Tuesday

El Milagro: Today Kim hooked me up smoothly. She was the tech who hooked me up on my first day, and she is always conscientious about telling me to keep my arm still, and she asks how I feel a lot.

I had a medium long conversation with Jennifer the dietician today. She arrives asking if I am taking my binders with every meal. The binder (Renagel 800 mg) attaches to phosphorous in my intestinal tract and escorts it out of my body ( Patients on dialysis should keep their phosphorus levels in the 3.5 to 5.5 mg/dL range). Without such an escort, phosphorous builds up because neither kidney nor dialysis machine can process it.

According to Jennifer, my last blood work showed high phosphorous again so we were trying to figure out when I started taking the Renagel and she was curious about whether I am taking it with every meal…. I assured her I am. Other than that, she reported that my blood work looked good. We were also talking about my adjustment to dialysis and I ended up hesitantly telling her about my blog, which she was immediately curious about. She asked for the web address and I reluctantly gave it to her, cursing myself for my being so acquiescent in the presence of engaging young women. So, the cat is out of the bag in this system and I hope that it takes awhile to become common knowledge, and thus pull me into the box.

The place is not crowded today… I can see the whole room and there are only 8 or 9 chairs occupied. There are 11 staff here, so I think that is a good client/staff ratio. Marilyn social worker stopped by and we discussed her efforts to get me a visit to the Kerrville Dialysis Center for Saturdays during the Kerrville Folk Festival. She said she will talk to the right person down there tomorrow. I shared that I had also put in an online request for space through Davita.

Got out of there by 7:45 tonight.

Later:
Some High Phosphorus Foods

Milk, Cheese, Yogurt, Ice Cream, Beer, Cola, Milk-based Coffee and Chocolate Drinks, Chocolate, Brown Rice, Wild Rice, Whole Grain Breads, Cereals & Crackers, Corn Tortillas, Pancakes, Waffles, Biscuits, Pizza, Avocado, Nuts, Seeds, Nut butters, Dried Beans & Peas, Corn & Peas, Processed Meats (Hot Dogs, Sausage, Turkey Sausage, Bologna), Sardines

Dialysis Number Nine (#9, #9, #9)

Saturday

El Milagro: Got here about noon and the place is hopping. On Saturdays staff try to squeeze the last shift (me) in early so they can get off early. It seems the patients like to get done as early as possible too. I like it on Saturdays because it seems the staff are more friendly…. Perhaps because we who are served are also serving them by coming in early.

I don’t want to suggest the staff are unfriendly on Tuesday and Thursday: they actually seem to be very caring, professional, and conscientious all the time. Nurse Phyllis has said this the best place she has worked in the 30 years she’s been a nurse. Spending 12 hours a week here, I am getting to know the staff in a more personal way than I did at Moritz’s office or when I was in the hospital last summer. I’m already finding staff who are good at sticking me, and Tory is my favorite. Today he was standing near my chair but not responsible for it, yet I asked him to stick me (). He agreed and then asked me to tell the other tech (who is responsible for my chair), and they made a small joke about who’s the best sticker.

One of the interesting things about coming here is that it is a perfect opportunity to observe a system almost from outside the box. I am just one of many patients so my impact on the system of staff is probably minimal, allowing me to observe their patterns of interaction, organization, and processes. I am enjoying observing their system rules and structure without asking questions about how they operate. So, that is a mental amusement while I sit there for four hours.

I am a person of habit and I find myself developing a habitual way of spending my time while at dialysis. (Of course this will change when I begin working from the dialysis center). When I arrive and get hooked up, I observe the setting for a few minutes and then start writing a post. Once I’m tired or bored with that, I read whatever materials I’ve brought to read (today it was The New Yorker (April 17th issue) article about Pete Seeger’s life and Bruce Springsteen’s new CD of his songs.) Last Thursday I read an article from The Family Therapy Networker (refusing to call it by it’s new name) on working with Stepfamilies. I counted that one as work time.

After reading, I begin to fidget and decide to watch TV: today it was cooking shows on PBS that featured things I can’t eat but love seeing prepared. Then, before I know it it is time to get unhooked and weighed and out into the sunshine.

Data Notes: I weighed in at 71.6 Kg. and Tory said they’re “pulling off 1.2 Kg. In 4 hours. When I left I weighed out at 70.6 Kg. (1Kg. = 2.2 lbs.).

Later at Home: I got an email from my friend Richard in Utah (who hasn't kept up with my deteriorating kidneys). He looked over my blog and wrote, “Damn, Jack, it's worse than I thought, even if you insist on making it an adventure. …I don't recall your ever being much good at sitting still four hours at a stretch. Still, it's better than the alternative. I'd rather not hear too much about the letting go part of you letting go. it's selfish, but I prefer your being around.”

I wondered if he was taking “letting go” in a different way than I meant, or if he is just being morbidly humorous. And then I started hallucinating that other people might not understand the “letting go” so I wrote back to Richard the following clarification:

Damn, Richard, letting go is not "giving up"! Letting go is about accepting what we can't change and if possible, recognizing it is a necessary part of the total process. As Chou Tun-yi (1017-1073) said long ago "That which has no Pole! And yet it is the Supreme Pole. The Supreme Pole moves and produces motion, the yang. When the movement has reached the limit, rest ensues. Resting, the Supreme Pole produces the yin. When the rest has reached it's limit, there is a return to motion. Motion and rest alternate, each being the root of the other." This quote is from Alan Watts’ Two Hands of God (1963). Jack Kornfield has a whole chapter about this in his book, A Path With Heart but I leant it to someone, so I can't dig up a quote from it right now. Jack.

In this experience, I have to cognitively integrate the new dialytic part of my life with my other learnings and experiences so as to fit it in rationally. Learning is a process of data intake and integration with data that already exists in my fuzzy brain. Back in an NLP training in the 80's I imagined my brain as a floating sphere with compartments on the surface and with electric energy zooming around, zapping new data bits into the compartments they most closely resembled. Once integrated into their compartments another operartion, working through the center of the sphere, developed a data link between the new information and every other possible data bit that it might fit with, such that the whole spheres insides were a system of interlocking connections between the data bits. Some of them organize around ideas to produce new realizations that are more than the sum of the data bits and they become ideas, theories, designs, or creations and are pushed from the interior to the surface of the sphere as new compartments. From the space outside the floating sphere, the compartments resemble polished aluminum library card file drawers. So, my posts are a reflection of my thoughts about how this new experience integrates with the rest of my life experience.