70) Dialysis & Big 12 Football

October 28, 2006

El Milagro: Matt cannulated me today. I took a nap for awhile and watched the Nebraska – OSU game and began the UT – Tech game, leaving when UT was 21 points down. Yuck!

Later: Liz and I went out to eat at Cypress Grill and watched more of the game… when we left there the score was 31 – 28 and I was still worried enough to forgo watching the rest of the game.

Later Still: We watched a movie (Prairie Home Companion) and saw the report on the late news: UT beat Tech 35 – 31! (Sorry, Michael)

Notes: In at 73.6 and out at 72.0 Kg.
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69) Later Thursday

October 26, 2006

El Milagro:
Carol stuck me today after I ran into the clinic 20 minutes late. Here we have this new deal about our starting times starting later and I’m angry about it and so
what do I do about it? I show up later. Good job Jacko. Show them you can be a non-compliant person by coming in later! Oh well… who ever thought I was perfect doesn’t know me very well……

I have a hard time with change, as most of you know. I was ready to come in before 3! So there I am at quarter til 3, ready to leave the office. “Nope.” I say to myself; “Gotta wait another hour”, and I get back to work on my project. Sooner or later Kim comes in (at about 4:15) and says, “I thought you have dialysis today?” and I go, “SHOOT!”, close down my document and run outa the door. Zip across town in less than 10 minutes and here I am.

Phyllis comes by to listen to my heart and data enter my stats and I relax down into my chair and breathe out… as if I’ve been holding my breath since I left my office. Herman isn’t here today and I hear nothing about my letter… not that I thought I would by today. I figure it’ll be a week or so while they percolate on my thoughts.

I watch The News, Survivor, and two Gray’s Anatomy’s and get out of the place by 9:15 and have to shoot back across town to pick up Shayna at Calla’s house cause Liz is at the NASW Statewide Conference in Arlington tonight. So it goes.

Notes: In at 73.3 and out at 71.6 Kg.


68) The Letter

October 24, 2006

El Milagro:
Diana stuck me today. I was able to walk right in and sit down at 4:10. Before I sat down I put my complaint letter in Herman’s mailbox and asked the junior social worker to take a copy to the administrator. Later in the evening, Susanne the Administrator stopped by my chair to say she got the letter and would be happy to talk to me about it after she has a chance to read it carefully. I said, “Okay”.

Tonight I got seated in the chair with the worst TV in the joint… is someone punishing me? As a complete surprise, several of the staff surreptitiously made comments indicating their support. So, evidently some of them are not completely behind the changes either, maybe because they won’t be getting out as earl as they used to either.

Here is part of the letter to the administration:

“Up until now I have considered your organization to be very client-centered and have used it as an example in presentations I do. I have said things like, 'El Milagro allows family members of patient to walk in and around the treatment center, which makes it seem much less ‘medical’ and patient/family friendly'. I had reported that staggering start times was a good idea because, unlike doctor’s offices where people have to wait for up to an hour to get in, you all tried to schedule people to come in every fifteen minutes (or so I thought based on my observations). I also have lauded your practice of working with each person to offer individualized diets and treatment regimens, based on a collaboration approach between patient and staff. This is very good practice and allows the patients and staff to have a friendly, supportive, and collaborative relationship. Now it seems that the new computers are dictating the relationship between staff and patient, and necessarily relationships will be less collaborative and supportive. I am afraid El Milagro will be more like the unfeeling and bureaucratic organizations that most of us are used to being at odds with in our struggle to deal with our medical challenges. If your concerns are related to your administrative (bureaucratic) needs, then I believe it would be more honest to just say so in your letter. Your ‘friendly manner’ in explaining your less patient-centered changes is somehow patronizing, since it is clear that these changes are not going to make our lives any easier, or better. If these changes are actually based on ‘patient safety’ then it would make more sense to explain exactly how patient safety is enhanced.
I hope that you will seriously consider that when you stay more client-centered then you do a better job of meeting your goals and objectives. In your letter you say that if we patients had a concern you were listening. I hope you are listening now.
In my conversation with Herman, he explained the difference between your new ‘three set and inflexible times’ approach and the ‘wave’ approach and how the wave approach can lead to people being late all the way through the day when one person is off. He continued that if all patients were like me that the wave approach works, but then said that change is needed because all patients are not like me. When he referred to ‘like me’ he clarified that I am on time, don’t quit treatment early, don’t have too many problems that cause treatment to go over time, and that basically I am a cooperative patient. So, partly the system is changing to satisfy the needs of problematic patients and punishing the good patients. That is not a best practice in any “patient-friendly” organization.
I would like to suggest you all consider a ‘modified wave’ approach that is structured around rewarding the patients that follow their regimen and are easy to work with. This could be accomplished by having staff identify who these dependable and compliant patients are and organize them into a subgroup of patients. Then the staff could assign these people to a group of chairs in rotation. For example, if there are 6 people per shift that meet the criteria, then 6 chairs would be identified as ‘wave’ chairs and these folks could be set on a 15 minute start time based on the time it takes staff to clear the chair for the next person. The procedure would reward us who are dependable and compliant clients and would set up a reward to motivate the other patients to work towards.
Also, most client-centered organizations establish client (patient) advisory committees whereby the administration can access client ideas and recommendations on an ad hoc basis, since the clients are intimately involved in the success or failure of the business. These committees should be involved in all levels of the administration of the organization, but especially those procedures and policies that have a direct impact on the users of the service. I would be happy to serve on such a committee if you decide that you want to be a “patient-friendly” organization.”

Notes: In at 74.5 and out at 72.0 Kg.


67) The Monarchs are Flying South

October 21, 2006

Morning: Shayna scored twice this morning in her soccer game! The first score wasn’t counted by the ref, even though the coach, fans, and I all agreed that the ball rolled over the goal line before the goalie stopped it. Shayna played much more aggressively in the second half today. I had asked her before the game to “play 100%”, since she hasn’t scored in a number of games. At one point she ran over the goalie trying to push the ball in, and the game was stopped for a few minutes while the goalie re-adjusted herself. Shayna also made a number of great passes and assisted on at least two goals. On the second goal Shayna made, Maddie had shot at the goal and Shayna was following the shot as it was rolling slower towards the goal, and she booted it just as it was about to cross the line, making it her goal. Maddie had already scored one, so she was yelling for Shayna to kick it in, and Shayna did. We’re not even sure where the opposing goalie was that time. Right after this score, the ref blew the final whistle and the Kick Kats chalked up another check in their win column (Kick Kats 10; Angels 0). They are unbeaten this season, with only two games left.

The weather for the game was clear and cool, starting at about 65 and rising to 75 by the end. Throughout the game we noticed the Monarchs flying south… first just a few but by the end of the game there were 4 to 5 anytime we looked up for them. They flap for awhile and then glide like hawks, always moving due south toward their winter home in Mexico. By the time we left the fields they were everywhere. We reported the Monarchs to the Monarch Research site.

El Milagro: Herman came over to cannulate me today after I waited about 15 minutes, since there were four or five of us coming on (being stuck) at the same time. (I had called early today and was told that I couldn’t get in any earlier than 4 pm. Later I called back and was told 4:15). Herman said he wanted to spend some time talking to me about my complaints related to their procedural changes. Long story short: the administrator put out a friendly, folksy letter that confusingly changed everyone’s schedule and I now have to come in an hour later, meaning I’ll get home an hour later. When I told Herman I was going to complain in a letter, he replied, “Pass it around so everyone can sign it… rather than me getting 35 letters.”; to which I said, “I’m not sure everyone will agree with MY complaints.” Herman spent some time explaining the logic of changing from a ‘wave’ approach (where everyone comes on at staggered times) to the approach they are now taking (I call the ‘make everyone wait’ approach) where there are three shifts which start at three times, an hour and a half after the last shift has finished. After talking to Herman I decided to edit my ‘belligerent’ (according to Liz) letter to soften the tone and to add some suggestions about using a ‘modified wave’ approach that will meet my needs. As I explained to Herman, if I have to get home at or after 9 it is too late for a family dinner and too late to have any time with my 10 year old daughter before she’s supposed to be in bed. Herman acknowledged my wants and asked me to bring to their attention any ideas I had that might work to satisfy their needs and mine.

More from my letter as I edit it… because, it also has to do with ensuring that organizations continue to move in the direction of client-centered services and I know that is of interest to some of my readers.

Notes: In at 73.5 and out at 72.0 Kg.
Monarch Migration Map (2006) Track monarch migration to Mexio online at http://www.learner.org/jnorth/images/graphics/


66) Lab Report & Enchilada Surprise

October 19

El Milagro: Carol cannulated me today. Discussed latest lab results with Jennifer the Dietician tonight. My labs look good; phosphorous is lowering to 5.7 (3.5 to 5.5 is good), PTH (parathyroid hormone) is good at 288, and potassium is getting higher again (5.8), but not radically (3.5 - 5.5 is good). She also talked to me about beginning to watch (count) my fluid intake, since it may be that my fluid retention is rising. That would be bad news, cause it would inevitably lead to my having to keep fluid intake down to a level that is less than most people drink in a day.

Notes: In at 75.3 and out at 72 Kg.
Yesterday my friend and former mentor, Wayne came to town to do some workshops for a conference. It was just by a fluke that I even heard he was gonna be in town. I was at the Mariott at the end session of the Evidence-based conference Liz organized and ran into an old social work friend, who told me Wayne was coming in to do some workshops for their conference, which was starting right after Liz's ended. I emailed Wayne that afternoon and made plans to I pick him up at the airport and we then picked up Liz and Shayna and went out to eat at a Mexican restaurant. I ate two cheese enchiladas and they were fabulous, to coin a Wayne phrase. That's the longest I've ever gone without an enchilada. Maybe if my PTH stays down and I keep taking my binders, I'll be able to eat-an-enchilada again.


65) Sick of the Whole Thing

October 14, 2006

Earlier Note:
I haven’t posted in a week now. I’ve been sick of this whole thing and felt like ignoring it… of course, I can’t really ignore going for dialysis… but I can ignore writing about it. There are people who don’t show up for dialysis and my guess is that they get up one day and say, “Shit! I hate this and I’m not going today! There’s no way that they can make me go. I don’t care what happens or how it hurts my system… I’m not going!” And so they don’t go. And sometimes, those folks end up hospitalized before they decide to come back. It’s like breathing to us that need it. You can’t really decide not to breathe anymore. Of course, breathing is easier than dialysis.

But, I maintain when I’m feeling positive, that you can frame dialysis like breathing by saying to yourself, “This is just what I have to do to keep my health, like taking needed medications, washing my hands after pooping, washing veggies before cooking, eating healthy foods, exercising, keeping a positive body image, doing good deeds”, etc. I said to a friend in an email today, “I have to remember that the dialysis is just one of those things like the things we all do to keep our health”, and then I reported to her how I get out of the occasional distressing doldrums. “Today I'm doing better, after going out of town and immersing myself in my passion (training/consulting) for a few days. When I do that I put myself in service to the people I am training and that process helps my attitude adjust.”

El Milagro: Called Ron this morning and he said, “Call back at noon” and then at noon; “Come in at 1”. Gladys cannulated me today and I settled in to watch Missouri beat A & M. They almost did it too… but, A & M’s 12th man figured in the equation and A & M won. All I did today was watch Primal Quest Utah* and the football the game.

Notes: Tuesday: In at 75.7 Kg. and out at 72.0 Kg.
Thursday: In at 73.9 and out at 71.8 Kg. I got the report from Jennifer the Dietician that my lab work looks good! Phosphorous is down and it seems that moving up to 90 mg. of Sensipar is the solution.
Saturday: In at 73.8 and out at 71.3 Kg.

* Primal Quest Utah: on the web at http://www.ecoprimalquest.com/2006/race/map/


64) Red River Blowout

October 7, 2006

Earlier Today:
I called to get in early and Monica said, “Sorry, Bub. No space in the inn til 3” But then, at about 1:45 Wilma called me and asked if I could get there by 2:15; to which I responded, “Oh yeah!”.

El Milagro: Matt stuck me today and he was in a hurry and when he gets in a hurry I get hurt... so it was a painful stick today... although he did apologize. I was too distracted to really complain about Matt.

Today was (I’m writing this afterwards) a great day at dialysis! I got to watch the whole Texas / OU game uninterrupted by people visiting and talking! Whenever I watch games with friends or relatives present, it seems to me that to them, talking is just
as important as watching. I hate that! I only like the kinds of guy comments like those that my brother-in-law, Larry, and I make while watching games. “Wow. Did you see that?” or, “Ugh. How could they have done that?”, and Larry’s occasional comments about stats or something he’s read in the Sports page.

The only somewhat annoying interruption I had for today’s game was the guy in the next chair clicking his channels from game to game, which also impacted my TV si
nce, up in the TV space up near the ceiling, my TV is directly behind his TV. So I had to sit there with my clicker at the ready to switch my TV back to ABC whenever he switched his. That type of interruption is vastly more acceptable than a discussion going on about restaurants or gossip about friends and neighbors. Sorry relatives, that’s just the way I see it.

Anyway, it was a great game in the respect that it had suspense, excitement, and unbridled joy all wrapped up in one spectacular event. UT scored first… then OU came back an
d scored several times, and then we went into half-time losing. That was the suspense part: thinking oh-my-God we could actually lose to OU and how would we handle that? By the way… I didn’t ever graduate from Texas, but I am married to a 4-graduate Texas family and I taught as an adjunct faculty there for a number of years; so I feel like it is my University now. I started supporting UT 24 years ago by going to UT Women’s Basketball games because a friend of mine did the scoring and got me in for free. Then I started watching the men’s basketball team… and finally I got excited about the football team in the last few years. Now I pee burnt orange!

Back to the game… Who knows what Mack Brown said to the boys at halftime, but they came back with a vengeance in the second half and totally shut out OU. My favorite play was when the OU quarterback flipped a little lateral pass out to the halfback and he missed it and Texas’s Ross picked it up off the ground and scrambled the ten yards or so into the end zone. Was it a forward pass? NO. Are laterals only backwards? NO. Is it a UT touchdown? YES!!! UT went on to win 28 to 10 and I am energized and jubilant and I think I should take Lizzie out to dinner tonight!

Right now I’m thinking about my favorite ex-brother-in-law and good life-long friend Tom. He graduated from Texas and now works at OU. Who did he root for in this game? Tom… if you’re reading this, I hope you cheered for your alma mater… and weren’t wearing the crimson and cream already. It’ll be okay to go crimson and cream after 30 years or so, I’d say.

Notes: In at 74.2 Kg. and out at 72.1 Kg.

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63) The Orange Team

October 5, 2006

El Milagro:
I came in a little late, which allowed me to see all of Survivor tonight. Chuy (Rick) cannulated me and I kidded him about wearing a green neckerchief tied around his head, gang style. “Hey Chuy… you part of the Green Gang?” He explained that his green colors are in support of his mid-afternoon team. The facility has created teams of patients to compete against each other in their phosphorous numbers… whoa. Staff are the team captains and in charge of coaching their players on to victory, I guess. I’m on the orange team and got my own orange bandana which I promptly sat on and then shoved in my stuff bag at the end of my session. I’m not sure I want to play.

One of Moritz’s assistants and Ron the Nurse and Jennifer the Dietician stopped by on their rounds to see if “I need anything”. “How about a new kidney?” I thought of replying… and then didn’t because I wasn’t in the mood for verbal frolics . I reported that since my new order of Sensipar is in the mail, I’m gonna start taking 3 20’s tonight.

I napped for awhile and woke up in time for Survivor. Tonight’s show was a little more interesting… I always like to see the women come together in their winsome (yet, diabolical) ways and totally surprise the men, as they did with JP tonight. At the end JP admitted that he had no idea what hit him when he was voted off the island. I may not quit watching after all.

I got through with dialysis right at the end of the show, and forgot that this season I switch the channel to watch Gray’s Anatomy. I get very trapped into my habits and it is difficult to change… like the old dog that I am. "Asi es la vida."

Notes: In at 74.4 Kg. and out at 71.7 Kg.


62) High PTH

October 3, 2006

El Milagro:
I called before going over to ensure they’re on time today and got here about 3:15 today. Matt stuck me and hooked me up while talking about something he thought I’d be interested in. I read David’s book for awhile and then put it down and snoozed until 6 or so and woke up to see Jennifer the Dietician making her sweep of the chairs. She came over and we discussed my recent lab results.

They are thinking I’m on a very high dose of binders and that even with those and the Sensipar my phosphorus and PTH (parathyroid hormone) are very high. J the D explained that they want me to start taking Sensipar 90’s as soon as I get them and we’ll see what that does. If nothing, they may have to send me to a specialist to check out my thyroid glands. Maybe some cutting will be indicated she seemed to suggest. Oh boy!

I watched NOVA and got home by 8.

Notes: In at 75.8 Kg. and out at 71.5 Kg.


61) In Which Jack & Jill Trade Chairs

September 29, 2006

Earlier that Day:
4:45 am and the alarm is ringing and Liz elbows me and says, “Time to get up”, and I grudgingly do so, wondering why I agreed to go for the first shift. As my fuzzy mind clears it all comes back to me. I was stupidly trying to make my family happy. WHY DO I DO THAT? They want to all eat dinner together, like Rabbit visiting with all his relations. And of course, Piglet says it won’t be a dinner without Jack. "Come on Jack, get an earlier time for dialysis". So Jack begs Herman who originally says “No way, Jose.” but then checks the board and finds out Jill wants a later time and we can trade. All these children’s stories collide: Pooh, Piglet, Rabbit, Jack & Jill… what’s it all mean, Alfie? My colliding metaphors only suggest that these all tumble and jumble around in my fuzzy brain as I’m sleepily driving cross town to the center at 5 in the morning.

El Milagro: I walk in and go directly to Jill’s chair and the tech says, “Hey buddie, that’s Jill’s chair” and I reply “But Jill’s doing last shift today and I’m Jack and we traded shifts. Check the board.”. So, it turns out the first shift came in at 4 and set up all the chairs without looking at the board (where the truth always is written) and set up my chair for Jill (See Post #39 in August). Well, I like Jill alright, but I don’t think I want to share dialyzers with her and even though we supposedly tumbled down a hill together, I doubt if she wants to share with me either. So, they have to change dialyzers and then the machine has to be re-calibrated, or introduced to the new dialyzer or something. At any rate, I finally get poked and hooked up by Boris at 6:15 or so. Boris is kinda goofy but okay at poking people. All goes well, meaning I go right back to sleep and snooze on until about 10. I wake up... it's light out, and I immediately wonder how Shayna is doing in her soccer game that started at 9:30. I imagine her running fast, watching the ball, anticipating where she needs to be, blocking kicks and charging on offense. I hope she isn’t lazing because I’m not there inspiring her to play tough.

Herman shows up at around 10:15, looking sleepy… shifting his eyes around as if he is trying to get the sleep out. He makes a quick sweep of the floor and checks on everything like a good supervisor. Now I am awake and want to watch TV but have somehow pulled out my earphones from the wall and don’t really want to bother anyone cause they are taking all the people off who really started at 5:30. At about 11:00 I look over and notice my BP is down around 88/55. Hmmmm? That makes me feel a little vacant. As I think about it, I discover that cold sweaty feeling coming on... like when you’re about to pass out. Oh great. I’m creating my own slide into fainty-land… So, I lay there relaxed (like almost out) and try to imagine my BP getting more activated, like climbing up steps fast. Boris finally comes over to unhook me and has me stand up and checks my BP and it’s like 92/58. “Sit down” he says quickly and checks it sitting down: 90/56. We go through this routine several times over the next 15 minutes and Boris finally de-cannulates the access needle and leaves the return needle so we can put in some saline if needed. Finally Boris calls Herman the Nurse over to supervise and Herman stands me up and checks me a few times, asking me to get angry. All through this I really feel okay and ready to leave. Finally my BP is up to 108/65 and they let me out. Who knows what that was all about? I still have new experiences in dialysis!

Later: After getting home from dialysis I found out that Shayna’s team won, 2 – 1 and that she didn’t play as good as usual… said to her mom she was tired. We spend the rest of the morning rushing around straightening up the house and then in the late afternoon we have our relations over for sauerbraten with pasta, salad, and two kinds of pie. Although the event is billed as Shayna's Third Birthday Dinner; Diane's Big Birthday Dinner, and Grandpa John's Pre-Birthday Dinner, the meal is actually the family’s traditional, large, festive, pre-fasting meal before Yom Kippur and this year it's a day early, by agreement of the elders (Liz, Joan, and Diane). And this year we have my dad joining us from San Antonio, making it 11 at the table. Beginning at sundown tomorrow, Liz will fast through Yom Kippur and we usually attend Kol Nidre services in the evening and services all day on Yom Kippur*.

Notes: In at 73.3 Kg. and out at 72.3 Kg.
* Rich, T.R. (2005) Yom Kippur. Retrieved September 29th online from the Judaism 101 website at