223) Epogen Aneurysms Anyone?

February 28, 2008
Thursday

El Milagro: I’m here on time again! Meet Jennifer the Dietician on my way in and she concernedly reports that my phosphorous is high again (6.2… and 3.5 to 5.5 is normal) and asks if I have been to Laredo. I say, “No… but, I was in Michigan last weekend.” I add that its probably the fault of “on the road” food, and she nods that home cooking is always better… and, then adds that my blood count is lower too, and they are going to give me 6600 units of epogen ("more than you've ever had before"), which I hallucinate is enough to boil my red blood cells and give me multiple aneurisms in my brain and lungs… so, I just roll my eyes at her, say I’ll do better on my diet, fold up the report she gives me, and slink off to my chair.

Rosie the Tech comes to cannulate me and set up my machine. I bring up Kim the Nurse’s pregnancy… a safe topic that is not about my blood boiling brain explosions. “Wow, that girl is getting BIG” I throw out. “Yeah. She looks like she gonna explode!” replies Rosie, wide-eyed. And then she adds, “they’re gonna do a caesarian section this time…” and I wonder what we can talk about now…

Celeste the Nurse comes up to do my nursing eval and is unusually friendly and I wonder if Ron the Boss Nurse is working with her ‘bedside manner’. Later I call Ron over to explain to me my epogen increase. He reports that 6600 units (they call ‘em units because the come in little vials that aren’t exactly any exact amount, about 1.1 cc’s I think he says) and my mind is picturing 6 thousand 6 hundred little vials rolling around in a box and the nurses chasing them around to fill a syringe… and then Ron complicates my visual image even more by saying that actually a dose is 3300 so I get 2 doses. I decide to try another question, so I ask about how it works. Ron is happy to share that epogen stimulates red blood cell production and it also helps the red blood cells live longer. I fantasize that that is before they blow up in my brain. Then Ron actually makes me feel better when he says, confidentially, that I really am not getting that much… some patients get 20,000 units! We should all be wearing helmets when their brains explode! I thank Ron for explaining all that to me, and turn to pay attention to NPR. I am feeling better just knowing that other people get way more of this dangerous, killer drug than I do.

Notes: In at 76.9 and out at 74.3 Kgs.
‘Epogen’ retrieved online from Drugs.Com, http://www.drugs.com/epogen.html
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.

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February 29, 2008
Friday:

Home: While watching the ABC news I went online to answer a survey about whether or not I agree that adopted people should have the right to know about their birth parents... and found the ABC Discussion Board... and then found this discussion topic:

Paying for Kidneys: What do you think?
More than 5,000 Americans die each year waiting for a kidney. One prominent surgeon has a radical solution to the organ shortage: Pay for them. The president of the American Society of Transplant Surgeons proposes offering $60,000 or more to people willing to give up one kidney. Most surgeons are appalled at the idea. What do you think? Is this the marketplace at work, or an ethical nightmare?

What I Think: “As a person who is on dialysis and waiting for a kidney now for a couple years, I think it would be GREAT for the government to pay people to give up a kidney for use by someone who needs one. This practice is already going on in third world countries for much less money, and at the expense of people who have much less sophisticated medical care to take care of any crises. Those countries see the United States' as coming in and harvesting kidneys and that practice probably doesn't improve our reputation world-wide. The idea of harvesting kidneys in our own country keeps the money here, helps out people who may need money to buy back their mortgages, and supports the American brother-help American brother idea. As for the ethical-moral questions, those should be left up to individuals who have these kind of choices in front of them. Most of the organized religions have already made statements supporting the giving of organs. Many of the patients awaiting kidneys will take the organ now and wrestle with their religion, if needed, later.

Now, some people might say that paying for an organ is just not right... but, trust me... when it is your medical situation and you find yourself wasting away in dialyland, you make choices that keep you on the planet. I say harvesting and paying for kidneys is a win-win proposition for people who need a kidney and for people who could use a fairly safe 60 K.” austinjak

Notes: Posted 2/29/08 on ABC News’ Discussions, available online at http://forums.abcnews.go.com/n/pfx/forum.aspx?folderId=7&listMode=13&nav=messages&webtag=
ABCWorldNews

222) Memories of Michigan

February 26, 2008
Tuesday

El Milagro: I arrive here on time again, driving directly from renting a car at Enterprise for a quick trip to Victoria tomorrow to do a workshop on Ethical Conversations with Youth. Another Pontiac... this time it’s a new G-6. I might note here that one of the perks of traveling around the state doing workshops is renting new cars to cruise in.

I weigh in today at 78.9… a little high, but makes sense after going 4 days without dialysis… wow… you know, I have never in the last 22 months gone for four days without getting dialyzed! Noting that in my brain of brains throughout the day today, I note that I don’t really feel any different, so 4 days is not enough, I guess, to begin to feel bad. It is enough to pull the weight up a bit… and I am glad that I don’t actually feel the four days…

I walk into the big room and wander around looking for my chair… and realize that it isn’t ready yet… Carol the Tech points over at a chair filled with a body that is holding their punctures, waiting to get taped up… and I realize I have some time to wait… but then Kim the Nurse calls out to one of the tech trainees to set me up in an empty chair across the way… and voilá, I have a chair. So, they set me up and that takes about 15 minutes for the machine to get to know the dialyzer [time for the machine to run its components tests and then rinse the dialyzer before they hook me up. This is still a better deal than waiting for the other chair.

So, I am sitting here pondering the trip to Michigan while waiting to get hooked up. This trip introduced my new family to my old family… and I am always surprised at the immediate feelings of closeness I feel to relatives like my cousins, Susan and Elaine. I hadn’t seen them since my mom’s memorial service in Lawrence about 16 years ago. Susan, especially, and I were close as young children and that familiarity, I hallucinate, is still there and when I first saw her in the community room of the Congregational Church in Bangor, it was like no time had passed since the last time. The memorial service was an opportunity for Shayna to observe the rituals and hear the liturgy of a Christian service. Also, Shayna commented on how many relatives I have in Michigan and I laughed and explained to her that most of these people were friends of my Aunt Marilyn, not relatives… and I pointed out the actual relatives I could pick out of the group. Shayna was still impressed with the amount of people. She was also impressed with all the snow, since she has never been in snow… so, of course, we had to find a field for her and Liz to run and play in. Finally, we went out to my mom’s family’s (now my Cousin Susan’s) cottage which had been the center of my summers as a child, and was featured in the memorial service as a favorite memory of each generation of the family. It was fitting that the whole scene was covered with the whiteness of snow and cold… it somehow leant a sense of purity to the experience. I was very glad I decided to make the trip, and now sit back in the comfort of that choice and the memories it gives me.

Onward through the snow.

Notes: In at 78.9 and out at 74.9 Kgs.
New Readers: For an INDEX, click January 2006 on the Sidebar and page down to post # 207.

221) Early Dialysis for Michigan

February 22, 2008
Friday

El Milagro: I am here on time bright and early at 6 am on the dot. Actually it is dreary and early, not bright and early and the only brightness is the glisten of neon in the puddles from pre dawn drizzle. I am really tired since I got up and zoomed over here without even a drop of coffee… my thought, “just go over there… no time for making coffee… go and go back to sleep…” I was just here last night, and took off 2.4 kgs, weighing out at 75.3, .3 over my dry weight. This morning I weigh in at 73.1, so I lost some weight since I left last night? This is one of the mysteries of life, dialysis, and sleeping. And, I am too drowsy to think much about all these numbers and mysteries.

As I am walking in I see and nod hello to Matt the Tech and Debbie the Tech, who I never see anymore cause they work MWF. A tech that I sleepily assess to be a new guy comes up to me in my chair and introduces himself as Blake. He ploddingly sets up my machine almost as if he is doing it in slow motion, like my current state of wakefulness. I blink my eyes and then blink my brain to see if this perception is me… but even after blinking he is plodding. I cannot tell if he is unsure of every move, half asleep, or just really cautious. He does tell me every step he is taking and by 6:30 he is finally ready to stick me. He sticks alright but isn’t sure of his work so he calls Bear the Tattooed Tech over to review his work.

When Blake asks me how much weight I want to take off, I relay that was just here last night and today weighed in at less than my dry weight and ended with, “…so what do you do in this situation?” He shows a blank look, shrugs and says, “Take off the minimum?” like he is answering a test question. I can’t figure out if that is ‘his final answer’ or a question to me, so I just say “sure” and we are off to the slow motion morning again. In the back of my brain my small worry voice is predicting that this is a BP crash waiting to happen.

So the batteries on my radio need changing and I change two of the three and it works and I lay back to listen to the morning NPR offerings and snooze… for about two hours until I start feeling a cold sweat, general wooziness, and faintness associated with low BP. I look over at the machine and my last BP is something over 49, the 49 in red, signifying to any observer that the machine thinks it is too low. The next time it takes my BP both the numbers are showing red… 70 something over 45. I get Jason the Tech’s attention and he gives me some saline to bring the BP back up. It seems to take a 10 gallon hat of saline to get things back to normal and finally it is time to leave and I’m feeling better. I pack up my stuff and my brain is on into scheduling the day, thinking of all the things I have to do before catching a flight to Chicago at 4 o’clock.

I weigh out at 73.1… the same as my coming in weight! Oh well… at least my blood is clean. Since I’m still under my dry weight, I’m okay (meaning; not feeling it was a waste of time) with the session.

Later: Shayna and I are all packed and on our way to the airport, where we’ll meet Lizzie and catch a flight to Chicago. We’re flying American, so, of course, the flight is 2 hours late. We wait and Shayna gets ice cream and we finally get on the plane and fly across the country. Landing in Chicago is easy and before we know it we’re shooting out through Chicago, on our way to Paw Paw, Michigan in a rented wide-track Pontiac with brilliant RED dash lights that almost are too much. It’s cold cold cold in Chi-town, so we all get to wear our winter overcoats and boots. We find a good Jazz station to listen to and get into Michigan before stopping at a Flying J Truck Stop for dinner. I get a hot roast beef sandwich that reminds me of Midwestern real American Food… thick, heavy with Dark Brown gravy that sticks to your ribs. There is snow everywhere but thankfully not on the roads… and Shayna is delighted to touch and jump into her first snow experience. We get to our motel in Paw Paw by 11 and are happily ready to sleep. Tomorrow we will attend a memorial service for my Aunt Marilyn (see Post # 209, January 2008) who finally passed on and we will introduce Lizzie to my mom’s family, see the cottage, and visit with relatives. What a day.

Notes: In at 73.1 and out at 73.1 Kgs.
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.

220) Watch for the Sneezy Tech

February 19, 2008
Tuesday

El Milagro: I arrive and weigh in at 77.7 Kgs. and say “HI” to John the New Guy (who isn’t really that new anymore so we should rename him… let’s call him John the Book Reader since he reads a lot.) So, anyway, as I am weighing in John is finishing his session and standing there ready to weigh out. We exchange pleasantries and John mentions that this scale is still not working correctly. I observe as he steps on the scale and checks his weight and exclaims, “It is 1.3 Kgs different than it was a minute ago!” So, I decide to weigh again and I’m the same weight I was a minute ago. And then he weighs again and he gets a third new weight! He remarks that only occasionally does he weigh out at the amount they set the dialysis machine to take off. So, here we are… two grown guys jumping on and off the scale to do research on its’ weighing behavior. He is always different and I am always the same.

I tell John that my ending weight is never the same as they plan on the machine… it’s always lower and that I thought that the calculation on the machine and the outgoing weight weren’t even connected. John looks at me askance (hallucination: as if I am crazy). All of a sudden I realize that we live in different worlds: he may be one of those people like my brother-in-law, Larry, who have an engineer’s mind… the kind of people who expect ‘A’ to lead to ‘B’ and things to be naturally logical. John was a guy who set up high-end sterio systems, so the engineering mind would make sense. At any rate, I could tell John was a bit surprised by my summation about no connection between numbers… so, I added, “maybe it doesn’t matter that the weights are different..” I too was surprised at HIS logic tht those two numbers should jive… interesting thought. I go on in my mind to think… maybe we just come here and they take the weight off and then we go and then come back and they take weight off again and so on and the actual numbers are just fluff.

John intimated to me that since I am his PAC representative, he’d like me to bring up the fact that the weighing machine is screwy…. so, I promise I will.

When I get to my chair I touch base with Rosie the Tech, asking her about re-calibrating the weighing platform, and she says she will fill out a form to get it done.

A new tech comes by to set up my machine and I check my dialyzer and bath and they are correct. As she is working on setting up my machine she is snorting, sniffling and sneezing… without even covering her mouth, so I immediately get a bad impression and when she asks if she can stick me I have hallucinations of germs all over her body, so I beg off, asking her to ask Rosie to do it instead. For future tech readers of this blog, when you go to stick someone for the first time, 1) be friendly and introduce yourself first; 2) avoid sneezing all over everything (if you have the sniffles, wear a mask); and, 3) ask nicely if the person is okay with you sticking them.

So, Rosie came and stuck me and now I am listening to NPR…

So it goes.

Notes: In at 77.7 and out at 74.7 Kgs.

219) Sloshy Sleety Saturday

February 16, 2008
Saturday

Afternoon: In the sleet and wind gusts strong enough to knock over lawn chairs and flip umbrellas, the Kick Kats beat the Lava Jets 3 – zip! When we arrived at the field it was so cold I turned right around and went back home to get stocking caps, gloves, and my overcoat. Shayna played well in the second half (only 85% in the first half) and had two opportunities to score on crossovers after corner kicks. After the game, walking back to the car across the field in the mud, she reported that her last kick was actually a score because the goalie caught it behind the goal line, but the ref didn’t see it. One of the lessons of the game, I reply, and I told her I thought she attacked the ball better today.

El Milagro: In at 4 and right into my chair on the back wall. My legs and shoes are still soaked from soccer but the place seems warmer than usual. On the way in I see Gladys the Tech and go by to say HI to her: “long time no see…” and she smiles a “Hi” but doesn’t explain where she’s been. Carol the Tech sticks me effortlessly and painlessly and Kim the Nurse completes my Nursing eval. My dialyzer and baths are correct, I note.

Rosie the Tech is floating around and we have a short conversation about the Democratic Primary, being on different sides and each making a brief statement supporting our choice. This comes up because Bill Clinton is down the street tonight, opening Hillary’s Austin campaign office. I share that I signed up online to go to the event right after dialysis. No matter whom I support, I always like to hear Bill talk.

I am listening to Saturday’s All Things Considered while waiting for the UT / Baylor game at 5:30. I hear an interesting interview with a guy, Mike Doughty (not our Mike Doughty) who is a singer and Army Brat Poet who is discussing his songs and growing up with an Army dad who wouldn’t discuss Viet Nam. In the interview, Andrea Seabrook mentions that he was in a poetry class taught by Sekou Sundiata*, who also was, I believe, a mentor of our friend Reggie. It is a small world out there… or, maybe it is just that many of us attend and draw from a small crescent sliver of the world… at any rate its been awhile since I heard anyone talk about Sundiata. She mentions that Doughty quotes Sundiata on the album cover…

"Everything in the dream is the dreamer"

I ponder this and doze on it for awhile while ATC melts away into Garrison Keeler at Indiana U, singing in his Prairie Home Companion and I tune that out to tune in to a brief movie enroute to the game… watching the psychotic seductions of Alex (Glenn Close) in Fatal Attraction just enough to be scary (about 20 minutes) and then turning over to ESPN for the game.

I watch the game progress and note that it feels good to watch a game that I know we are gonna win throughout. But then in the third quarter, despite the fact that everyone is shooting the lights out (70% for both teams) the Bears are catching up and even get to within 2 points and I find myself getting nervous. In the end we squeak by the Bears with a win and play our regularly high pitched play for the last few minutes and I sigh a relief at the end: UT 82, Baylor 77… Sorry Charlie.

Rita the New Nurse comes over to decannulate me and I’m outa there and on my way thru drizzly streets to the Bill Clinton show. Hillary’s Austin headquarters is in the old Kinky Friedman headquarters, which used to be the Ben White Enterprise facility. I drive up to the place and there’s cops with flashing cars sparkling in the puddles all over the parking lot... and every other parking lot within 8 blocks is full to the brim. I cruise around slowly, looking for a piece of turf to put my truck on, swinging past the place a few times. There are swarms of people descending on the joint, like the flocks we see coming to Zilker for a Stones concert. I finally give up and decide that even if I get in, I won't be able to get up front.

I drive on home and watch Bill on TV. Turns out he is an hour late, so it was a good move on my part to forgo the whole thing. And, so it goes.

Notes: In at 75.9 and out at 74.6 Kgs.
*Sekou Sundiata reading “Bring on the Reparations” online at
http://www.youtube.com/watch?v=IWhnZPeW644

218) HAPPY VALENTINE'S DAY

February 14, 2008
Thursday

El Milagro: I arrive on time and Carrie the Tech comes over to poke me, telling me today that she has a song stuck in her head. I reply that that sounds okay. She jabbers right along and points over to the nurse's station, asking if I see the flowers over there… they are irises that were delivered to her by her old ex-boyfriend. She continues that Valentine’s Day doesn’t matter to her since she is single. I suggest that she could celebrate by herself, and she may have heard that, but it is hard to tell because she has already far down the track to reporting on how it is being single for two years and how she knows she’ll like her old ex-boyfriends new girlfriend but she hasn’t met her yet and how this song is still stuck in her head…

I am reading Bruce Wampold’s article* (from the Talking Cure’s listserve) about his volitional take on the effectiveness of psychotherapy and the change process… very thought provoking and makes me wish that the whole Board of the Texas Social Work Examiners’ Office could read it with an open mind because they seem very behind the times on the subject of clinical social work. Should I just email it to them? It doesn’t clearly say anything negative about their support of the medical model of clinical work, but it does support that there are many clinical ways that counseling works.

While I’m reading, Celeste the Nurse comes over and does my nursing eval and we don’t talk at all. Later, Suzanne the Administrator comes by to say “HI” and deliver a small Valentine’s surprise of popcorn and a juice box. I ask for two popcorns. The center also has a special movie piped in on the TV’s but I’m not interested cause tonight is Survivor and LOST!

Also today Rosie the Tech is going around to every patient and reviewing the emergency procedures for if the power goes off. This for-profit group does not have a generator for use in power outages, so we have to know how to hand-pump the blood in the machine back into our bodies, unhook ourselves, and get out of the building with some supplies for taping ourselves up, if needed. Rosie meets with every person to explain and then coach the patient in telling her back what they have to do. I like that she makes folks tell her back (part of learning theory) what they have to do, so that she knows they comprehended her instructions.

Oh, and Happy Valentine’s Day to everyone I usually send e-cards to but didn’t have time to this year… you know who you are Cecilia, Kim's, Gracie, and Luis. And for everyone else in my world, on this day, my heart bleeds for you.

Notes: In at 76.5 and out at 74.9 Kgs.
* Wampold, B. (2007) Psychotherapy: The humanistic (and effective) treatment. American Psychologist. 62(8) 855-873.

217) Seductive Orange Juice Attack

February 12, 2008
Tuesday

El Milagro: Dr. Rowder and Jennifer the Dietician come before I am getting stuck for their drive-by and they report my blood count is going up. That's good news! I tell them the story of my orange juice gluttony: on Sunday I am looking for a drink and open the refrigerator and this carton of Tropicana OJ is just sitting there glowing and shimmering… almost floating in a light that veritably shouts out seductively, “Take me!” and I notice my hand at the end of my arm moving towards it as my little brain says, “no no no”, but my hand isn’t any longer connected to my brain… it is somehow connected to the glowing carton of orange gold and I feel my fingers touching the waxy smooth cold carton, grasping it from its float and bringing it slowly up to dock with my lips.

My little brain is whimpering “no no no” but another part of me has control now… the part than can’t say “no” to that glowing carton and cool feel. And as it meets my lips and I gulp the orange juice of my m

emories (it seems like 10 years since I’ve tasted this taste), feeling and tasting its pulp free smooth tanginess flow down my gullet. This taste brings back memories of the orange juices of my youth, my adolescence, and my college years, when it was by far my favorite drink. I am gulping and reminiscing and basking in my past love affair with oraaaange jooooooce… ah yes… and then a little brain voice shadow again gets my attention… it is strangely the voice of my mother… “Jack! Don’t drink out of the carton!” and that grabs my 

awareness enough for the whimpering voice to catch my ear again and I can finally re-control my hand and begin to pull it away from my lips. The trance is broken. The impulse is over. And the taste is gone as the carton no longer glows and the whole compelling experience is done… as is about half the carton of orange juice!

Jennifer immediately wants to solve my OJ Gluttony by giving me options like drinking Sunny D. So, I respond with Liz’s famous guy response: “You know, you don’t have to solve everything. I just want you to listen to my experience and acknowledge it… you don’t have to tell me what to do to solve it.” From there we get into the difference between men and women (ala Men are from Mars, etc) and then off into family counseling and the idea of helping people come up with their own solutions rather than advising them how to do such and such.

Carrie the Tech sticks me and tells me about her internship as a tech and her initial fear of blood. She liked being a dialysis tech and had to get over her fear of blood so she did (and didn’t mention how). But still today she still doesn’t like getting shots herself.

I am listening to NPR, ABC, and PBS as usual and on the Jim Lehrer News Hour they interview a doc* who wrote the book, How Doctors Think, who is talking about how 20% of diagnoses made by doctors are wrong because the newer docs jump to diagnose without fully assessing the situation. I am remembering how Dr. Moritz, after two years of treating me for PKD, sent me for another test and when I asked about it, he said, “Well, I want to make sure it’s not cancer instead of PKD” and I thought to myself, “Shit! Why didn’t he send me for this test last year?” Dr. Groopman, in suggesting how patients can get doctors to expand their assessment, should ask, “What else could it be?”. Alright! For you family counselors who read these posts… does that sound familiar? “What else?” is a great question to have in our repertoire, for all sorts of situations. So, that’s the story for today… and so it goes in dialy-land.

Notes:
* Dentzer, S. (2007) Doctor Explores Decision-making and Diagnoses. Interview with Dr. Jerome Groopman, available online at the Newshour website, http://www.pbs.org/newshour/bb/health/jan-june07/groopman_05-15.html

216) Saturday Combo Session

February 9, 2008
Saturday

Morning: This morning is the Kick Kats’ first game of the winter season… beautiful weather at the Circle C fields, and the Kick Kats come out fired up and looking for their first Win! Shayna is playing midfield today. The girls look great for their first game, and finish 2 to 1 against the Dynamites, coached by Shayna’s old basketball coach. Kick Kats scored first, about half way through the first half. Then the Dynamites scored just after half time. Then, with about 5 minutes left, we scored the final score and played great defense until the end of the game.

El Milagro: I arrive at El Milagro ten minutes late… I’d set a 2 pm time with Debbie the Tech on the phone at 1 o’clock. Rosie the Tech wonders what took me so long to get here, but she thought I was coming in right after I called. I clarify that I had worked out a 2 o’clock time with Debbie. Rita the new Nurse of small stature does my nursing evaluation, sets up my machine, and cannulates me today. I pay close attention since she has never worked with me before. My bath is correct… it is my dialyzer… and, she does a good job of sticking me. She asks about the cannla placement… “One up, one down” I reply… and she is a smooth and steady needler… slips them in with the finesse of Herman the Nurse or Rosie the Tech (Don’t worry Herman; you’re still the best). [Small stature? Well, I hardly know her well enough to call her short.]

I turn on the TV to find UT’s game against the Iowa Cyclones and stumble upon the TV Guide Network’s show about the new Fans vs. Favorites Survivor. Of course I stop and watch for a bit as Jeff the Host comments on the cast of favorites and then introduces the woman who produces and tests the challenges with a team of 20 young people (now here's a job for Johnny) who construct and test them all before the cast even sees them (she is the Dream Team Coordinator). She reports that there will be new challenges in this go-round so that the Favorites don’t have a leg up on the Fans.

I switch over to the game and think there is something wrong with the color on my TV before they announce, “don’t adjust your TV. It is Pink/Pink weekend here and most of the audience is wearing pink.” All this pink makes a pinkishly magenta reflection on the wood floor and when the camera pans the stands, there is pink everywhere, like pepto-bismol sprayed over everything. The pink is for breast cancer awareness, and as I tune in UT is down by 2. I can’t post and watch, so, so long for now....

Later: Before 5 pm we have won against the Cyclones in overtime. Even though the game went into overtime, it didn’t scare me cause I couldn’t even imagine losing to Iowa. I switch over to a movie channel and watch the last half of Urban Cowboy. Boy it has been a long time since I saw this movie, featuring music by Charlie Daniels’ Band and a great rendition of “Devil Went Down to Georgia”, later captured live on the album “Charlie Daniels LIVE”.

So today is good Saturday combo: Basketball, Music, and Kick Kats’ Soccer. What more could we be living for? Well, for one thing, FRENCH FRIES SMOTHERED WITH TOMATO SAUCE, SHRIMP, AVOCADO, CHEESE, FRIJOLES AND ENCHILADAS! Oh well, fantasy foods will have to remain in the ether until the transplant is complete.

Signing off with “Vaya con dios, my darling”.

Notes: In at 77.6 and out at 74.4 Kgs.

215) LOST Survivors In Micronesia

February 7, 2008
Thursday

El Milagro: I’m here 30 minutes late today… called earlier and no one answered the phone so I figured they were behind again. I weigh in and find my chair and prepare for the session, taking my blanket, pillow, radio, earphones, and bag of candy out. Carrie the Tech comes over and sets the machine up and I check my dialyzer and the baths. She cannulates me, telling me that she can’t smell anything because of her allergies. I nod an acknowledgement and remember that she makes conversation by telling you what’s wrong with her.

I settle in with NPR’s ATC and then switch over to ABC News and then Jim Lehrer. Tonight is a special TV night: the New Survivor and a new episode of LOST! WOW!

The new Survivor is featuring a selection of the show’s fans on one tribe versus various survivors from recent years… including a number of my favorites like James, Yao Man, Parvati, and Cirie. So, the idea this time is to take a group of folks who’ve studied the show from the comfort of their couches and put them up against a group of past survivor contestants who didn’t win, but were “favorites”. From the show’s website*:

“In a SURVIVOR first, 10 ultra-fans of the series will take on 10 former castaways to compete as FANS vs. FAVORITES. The two tribes will be marooned amidst the Rock Islands of Palau, Micronesia. The skills of the former castaways will be put to the test while the tribe of first-time competitors will see if their enthusiasm and passion for the game is enough to distinguish them as worthy competitors. Who will prevail to become Sole Survivor?”

So the first episode is worth watching, as far as I’m concerned… but, you know by now that I am a Surviror FAN. I would be out there if not for having to drag a dialysis machine around with me.

Also, we have the second episode of the new LOST** and it continues with plot twists and mystery as the survivors of Flight 815 meet the freighter people. Are they coming to save them or to destroy them? That is the question at this point in the series.

So, to wrap this post up, Thursdays will be filled with TV watching and my easy chair comments on these two shows. Onward through the Fog!

Notes: In at 76.6 and out at 74.9 Kgs.
* Survivor Micronesia online at http://www.cbs.com/primetime/survivor16/about/
** LOST online at http://abc.go.com/primetime/lost/index?pn=index

214) Waiting Room Doctor's Visit

February 5, 2008
Tuesday

El Milagro: So today is one of the days when I get here on time and they are not in synchrony with me… they’re running about 30 minutes late. It seems like the center is running late a lot lately. So, I’m sitting in the weighting room and in pops Dr Rowder. “Can I do your doctor’s visit out here?” he asks. So what am I supposed to say? “No. I want a private office.” I do what I hallucinate most people do. “Sure.”: and then I say to myself… but, don’t expect me to discuss anything personal in front of these 4 people waiting here. The doc looks over my recent blood work report and tells me what it says; the only concern being my blood count being low. Then he asks how I am doing since my calcium crash. Then he asks if there is anything else we need to talk about. I am timing the meeting and it is over in 1.5 minutes. I am thinking about them charging my insurance company for this “drive-by” that is really nothing like a “doctor’s visit”. When I have more time and energy, I really need to take this practice on as a dragon to be slayed.

After Rowder leaves, Jennifer the Dietician stays on for awhile, sitting down beside me. She goes over my lab results in greater detail and says they are increasing my epogin because of my lower blood count. She adds that the blood count was low last time and is even lower now. I shared that I have been having daily nosebleeds but don’t think that should account for it. We briefly discuss my HHT and dealing with that.

When my back corner chair is ready Carol the Tech calls me in and Kim the Nurse cannulates me and does my nursing evaluation. I check my dialyzer and the baths to ensure all is correct. Kim and I discuss the doctor’s drive-bys, using my new tape, and her son’s not liking to wash his hair.

Once I’m all set up, I listen to NPR then watch the ABC News, the switch over to Jim Lehrer, and then finally back to ABC for the Super Tuesday coverage. I choose to make no comments in this blog at the moment about the primaries or candidates or my projections… it just seems like everyone is blogging about that stuff, so why add to the quagmire? However, I get immersed in these reports and the time passes quickly and all of a sudden it is time to get unhooked and head on home.

So it goes.

Notes: In at 78 and out at 74.6 Kgs.

213) Calcium Capers Continue

February 2, 2008
Saturday

El Milagro: I called in earlier to get an early time and then the UT / Baylor game was in the last few minutes and close… so, by the time I got to the center I was late! UT won! I apologized to Rosie the Tech, who wondered why I said 2:45 and then showed up at 3:15. My chair is in the middle of the room, facing the back of the center, at the end of the row. Before the new TV’s were put in, this chair had the worst TV in the place. Now it’s just like every other middle row chair.

So, Rosie is there to stick me and she says she wants to talk to me about something; prefacing this introduction with a statement like, “I don’t read your blog but others do and this little birdie told me that you wrote that the center had you on the wrong bath the other day.” She continues, “I don’t like to get involved in these things, but…” and then says although she doesn’t usually like to get involved because it’s not her place as a tech, she is willing this time because she is la mujera sabia del Milagro! Actually, I think she means to say that she will talk to me because we get along well and she trusts that talking won’t make things worse. She continues that I was on the right bath the other day and she doesn’t know how I got the ‘wrong bath’ idea.

Since Rosie hasn’t read post # 210, I share with her that Jennifer the Dietician, supported by Dr. Rowder, reported to me that the cause of my discomfort was that staff put me on the wrong bath. Rosie replies that when my calcium crashed she was doing my foot check and she switched out my normal bath for a 1K 4ca bath for about 15 minutes, at Ron the Nurse’s approval, and then put me back on a 1K 2Ca bath. Rosie believes I was originally on the right bath and that the calcium crash had nothing to do with the set-up. “It was just like Ms. Whatchacallit. Her’s crashes sometimes too.” So, in the end, Rosie’s report is different than Jennifer’s and now I am again confused about what happened.

Well, so as the world turns, Ron the Nurse comes up to do a nursing assessment and I take the opportunity to ask him about his perspective of 'the incident'. Ron reports that I was on a lower calcium bath than usual: a 1K 1Ca. When I crashed he okayed Rosie temporarily switching the bath to a 1K 4Ca in order to balance out my calcium before switching it back to the correct bath (1K 2Ca). Ron also says he should’ve explained the whole thing afterwards, but that I looked like was kinda out of it. I share with Ron my propensity for thinking that when something goes wrong it is my fault… something I did or didn’t do (internal locus of control) and that I always want to try to understand any deviations (the good, the bad, and the ugly) from the norm as soon as practical. [Question to Self: Does this proclivity go back to childhood, when I always was given feedback that I wasn’t doing things right? Maybe I just need psychoanalysis!] I add that if anyone at El Milagro reads my blog and disagrees or thinks I am axe-grinding, I hope they will let me know immediately. My intention is to write the blog from the perspective of the patient, including the patient’s worries, learnings, funny stories, and kvetches. Ron replies that he hasn’t looked at the blog in some time, and he understands my intent.

We move on to discussing the tape situation and he explains they are supposed to use one roll per patient. I suggest the idea of assigning a roll to a patient and ask them to take it in their bag until the next time. He likes that idea and adds that the small rolls only have about 8 or 9 strips on them, so he usually uses more than one roll per person. He continues that there is a new person doing the ordering and they are still learning their job. The next order will return to paper tape to replace the Tape from Hell (called silk tape in the catalog).

So the saga continues. From this last Chapter of the Calcium Caper I learn that there are many sides to any story in the Post Modern world and that when I tell my story it gets reviewed in comparison to other’s realities and then it gets retold and eventually comes back to me as another version of the little bird’s version of my version. Every person’s version is colored by their own life story and their own values, focus, and schema. There is no Objective Reality, Pancho! Say goodbye to the Modern World and hello to the Post Modern, Constructivist Era.


Notes: In at 76.7and out at 74.7 Kgs.
Bumper Sticker from Memories of Our Austin, retrieved online from www.hitcher.com/bumper_stickers

212) The Tape from Hell

January 31, 2008
Thursday

El Milagro: Here a little late today. On the way in I check the nursing station for the January El Milagro News to hand out and it’s not there yet. I mention to Rosie the Tech “They still haven’t copied the newsletter?” and she smiles and shrugs. My chair is on the back wall today. I settle in and hook up my earphones, etc. Celeste the Nurse sets up my machine and I ask her to show me the bath bottles to ensure they are 1K, 2Ca. They are. Kim the Nurse comes over to listen to me and cannulate me.

I notice they are using this really sticky tape again and ask Kim about it. She reports that the other tape hasn’t come in yet. This new tape is like sticking duct tape to your arm. It sticks like glue and when you pull it off, it pulls all the hair off, any scabs from your stick holes, any dead skin, and some of the live, screaming skin. And, it also leaves blackish marks around the edges that won’t come off with alcohol or soap. It makes me cherish the old ‘paper tape’ they ran out of. They’ve also run out of those little covers for the ear thermometers so they are using paper ones you put in your mouth and then they forget to pull ‘em out (seems like). Since I’ve been here this is the first time they seem to be out of supplies… I wonder if there is a financial problem or if Ron the New Boss Nurse is not that good at keeping supplies up-to-date. The paper thermometers are no big deal, but the tape from Hell is starting to bother me… mostly since I can never get my arm clean of the black marks.

I listen to NPR and doze until the news (reminiscing about my favorite aunt, Marilyn, who passed on last night), then watch the ABC News with Charlie. After that I catch the first story on Entertainment Tonight… about Brittney’s hospitalization (I am embarrassed to say… but, “news geeks want to know”) I move on to Jim Lehrer’s News and then to the season debut of LOST.

Somewhere in the middle of LOST, Rosie the Tech shows up with the El Milagro News copies and gives me some to hand out after my session. I also learn later from the staff news-line that the tape situation has more to it: that actually the “state” is now requiring the center to dedicate one roll of tape to each patient. The old large rolls of paper tape that techs carried around with them are no longer allowed, since they are possible carriers of germs from patient to patient. So, now the center uses these small rolls that they must leave at each patient’s station. And when they bought the small rolls of paper tape, it was not of sufficient quality (it kept ripping too easily when stretched). So, they ordered this new tape and they are getting lots of complaints about it from patients. So, now they are looking for a better supply of short roll tape so they can make the state and the patients happy. I wish the staff God’s speed at solving this problem!

And so it goes!

Notes: In at 77.1 and out at 74.7 Kgs.