Earlier in the Day: What a great time to be on vacation. Yesterday Lizzie and I spent the first day in months just hanging out at our house… reading, eating, writing our holiday cards, doing just a few chores around the house, and remarking all the way how nice it is to just hang out. Our lives, as everyone’s I think, are so busy, it takes five days to get to one where nothing is planned or has to be accomplished. And even then we are behind on some things: I finished up packing and mailing a Hanukkah/X-mas box to Johnny in Hawaii, with a few small wrapped up things (and some cookies). Mailing boxes to Hawaii is like sending ‘em oversees… You can send them “regular” mail, which will take SIX WEEKS, or special mail, which takes 4 to 6 days and costs twice as much.
About cards: I have always sent out holiday cards to a list of friends and relations. Over the years the list has grown and shrunk but I have always sent out some cards. These cards have reflected in some way either my thoughts or my view of the world. My parents sent out cards and the ones I remember are the ones with holiday pictures of me and my brother in some sort of holiday scene meant to show the recipients how much we’d grown, I suppose. As I moved out of the house and went away to college I remember coming home for Christmas and spending some part of my time looking through all the cards from friends of my parents’, reading their X-mas notes or those catch-you-up letters with holly boughs drawn on the edges. So, naturally, when I moved on with my life I continued the tradition of sending out cards. My first cards were to friends from high school who had moved away from Ft. Bliss with their parents, like Chuck and Robin. These cards were left-overs from my parents’ cards. Then, as I moved out on my own, I sent cards back to EP to my friends, like Dale and Anita. There are some people on my list now that have been on there since the ‘70’s, like Dale and Jan (now); the Parkers (the girls come home for Christmas and my card is at their parent’s house); Lynn, Richard, and Nancy. Mostly these cards were PEACE-related. When I left for graduate school in 1977, I added all my friends (considered family) from my hippie years (Cliff & Skinny and Albert are still there, as is Connie and Edna, and Steve & Nicky). For a number of years I sent Leanin’ Tree cards featuring works by cowboy artists of cowboys coming home at night to their ranch houses all alit with yellow windows and blue snow on the evening ground. And now that email is the preferred system, I have found some other old friends and added them to email + the professional and post-graduate school people. So, over the years there have been lots of people I send cards to, and of course, there are people who send cards to me too. But, me thinks this is changing.
Liz and I were noticing that fewer people are sending cards now-a-days. It seems we used to get lots of cards (enough to string across the ceiling of our living room) and over the years we’ve gotten quite a few less. Now, either we are less popular (a distinct possibility since we’re not as “cool” as we once were - our kids will vouch for this fact), or people are all as late sending out cards as we are, or… people aren’t sending out as many cards as they used to before it cost .39 cents to mail out a card. According to the Census Bureau* Americans will send more than 1.9 billion holiday greeting cards this year. Since there are 300 million people in the US, that’s about 6 cards for each of us. We got about 20 so that means we are more popular than the average bear. And, it still seems we’re getting less than usual. President Bush sent out 1.4 million himself, according to the Washington Post**, but we are'nt on that list. Some people warn that the holidays season is a waste of paper, and thus trees… so, I guess that in the future we will receive less paper cards than now. Some say that all communications in the future will be electronic and that all books will be plastic… as in discs. That’ll be strange… although I find myself sending out more and more electronic cards, or at least brief messages with holiday pics attached. Those are the easy ones. The fun ones include choosing an appropriate card for the recipient, double stick taping a picture inside, adding a brief note about our yearly challenges or awards, and addressing and stamping them to go in the mail. I always like stacking them up and shuffling through the envelopes, picturing the recipients holding them and looking at the postmarks. For a number of years now I haven't had to buy any cards because there are half-used boxes of cards from years passed and I only wonder if anyone recognizes they might get the same card several years in a row.
Today I cut back the roses and lantana in the back herb garden, shoveled up puppy poop, and put a new latch on the back gate, which Shayna and her friend, Maddie, already left open yesterday, letting Chelsea out to bark at invisible marauders in the creek. She didn’t run off but stayed right by the back porch barking her head off. Brave dog.
El Milagro: I’m Reading two new books that I got for gifts: Marion Winik’s new book of essays; Above Us Only Sky, and Michael Walker’s Laurel Canyon: The Inside Story of Rock-and-Roll’s Legendary Neighborhood, which I took and read for an hour or so today. Crystal cannulated me today, quickly and efficiently. I was the last person in on my shift, making me the last person to leave at about 8:20 pm. There’s a new guy (patient) I hadn’t mentioned. He is a slightly portly guy about my age who has tattoos from his head to foot and for awhile after he started I thought he must be some sort of guru or holy man. His bald head has these zig zag stripes from front to back that look reminiscent of Tlingit tattoos. His cheeks have swirls on them and even his nose is tattooed. His chest and arms down to his wrists are tattooed a solid dark navy blue and he has stretched his earlobes so they dangle down about 3 and a half inches. This guy looks like he must have been led to this body art through meditation or some sort of shamanic vision. Several women, who I took to be his devotees visit him and sometimes rub his feet. One of them is quite young and pregnant and the other is older but just as attentive to the man with the tattoos. So fianally I ask Herman what his story is, and it turns out he is a tatoo artist, not a holy man. One of the women is his young wife and the other must be her mother. And I was just about to prostrate myself in front of his chair and ask him for the answer to life’s tribulations. So it goes. (Usually, I think I know the answer anyway.) It’s just that when you see a person like this tattoo guy you think he must know something you don’t.
Notes: On Tuesday, after spending three days in Dallas eating holiday foods, I weighed in at 75.4 and out at 72.1 Kgs., losing over 7 pounds in dialysis! Today I came in at 74.6 and left at 71.8 Kgs.
*Census Bureau retrieved online at: http://www.census.gov/Press-Release/www/releases/archives/facts_for_features_special_ editions/005870.html
**Washington Post retrieved online at: www.washingtonpost.com/wp-dyn/content/article/2005/12/06/AR2005120601900.html
El Milagro: There are no Christmas decorations at El Milagro Dialysis Center… maybe because they don’t know how to mix Hanukkah, Kwanza and Christmas and don’t want to hurt anyone’s feelings. To me it is kinda weird because there is a strong Hispanic presence there and I expect the Hispanic culture to decorate like the dickens. I always enjoy visiting Mi Tierra in San Antonio for the holiday decorations that are up all year round. And, at this time of the year, I miss anticipating Christmas eve, when the family would pile in the car and drive over to Cumberland Circle (El Paso) to inch around, bumper to bumper, without our lights on, surrounded by luminarias along the sidewalks, porches, and rooftops of all the houses in the neighborhood.
I think that El Milagro ought to express the Catholic / Hispanic culture’s love of the Christmas season by hanging holiday decorations all over the place without worry or concern. When the complainers complain, there will be plenty of time for apologies and nods to the restrictions of political correctness. I can visualize the place with garlands of shiny metallic greens and gold’s hanging from TV to TV; large red and silver Christmas balls hanging from the ceiling with opened up paperclips; multi-colored strings of Christmas lights around the supply islands; and plastic frescoes of Santa Claus taped to the walls beside the “on stage” signs.
Gladys smoothly cannulated me today and I spent most of my session listening to KUT on Shayna’s little radio and drifting in and out of a long winter nap. At some point I awoke to find two boxes on my chair-table and, looking around, noticed that everyone had these two boxes at their chairs. Staff explained that these are DaVita’s gifts for us patients. That’s sweet… the people that we pay $74 K a year (through our insurance) are giving us gifts. I got a “DaVita” embroidered pair of navy blue mittens, a pair of slick wrap-around Gap sunglasses, and a $10 gift certificate to Applebee’s!
So, the holidays continue. Tonight is the seventh night of Hanukkah. Our gift giving is drawing to a close before the Christmas people have even started. Of course, I still have lots of Holiday chores to do: making cookies; getting out our holiday cards; sending a package to Johnny in Hawaii, etc. I started my annual holiday vacation today so I should have plenty of time to put towards these tasks. YEAH Vacation! Tomorrow Shayna and Lizzie will be off too and we’ll all have a jolly time for the next few weeks.
Notes: In at 74.3 and out at 72 Kgs.
El Milagro: When I arrived at 1 the place seemed very quiet… many staff were out getting lunch and the next shift of patients haven’t arrived yet. They are putting me on between shifts it seems. Earlier I had called I call Ron the Nurse and he said I could come in at 1 today. Gladys stuck me swiftly and painlessly today and I put the TV channel on college basketball and used Shayna’s I-pod-like radio to continue listening to KUT’s Folkways* Holiday show. I ended up listening to the radio the whole time, drifting in and out of naps through the end of Folkways, through Live Set, and finally elevating back into beta consciousness to listen to All Things Considered, hearing about Mick Kipp’s cayenne pepper and chocolate salsa.**
Afterwards, I drove home to our Chanukkah celebration with the relations. I usually am in a tired out and “quiet” state when I return from dialysis, so I spent the drive home mentally preparing myself for a party… yawning all the way. As I zip-sped along on the Ben White Freeway, Jingle bells was jingling in my head… “Oh what fun to drive on home, yawning all the way…” And then, I thought up “On the second day of Chanukkah my true love made for me… A Brisket and a Latke partee…”, giggling all the way. What else can I say? Yawning all the way.
I still have some difficulties with getting the X-mas traditions out of my head to make room for the Jewish traditions… so, they all get jumbled up inside. When I first got together with Liz and we decided that we wouldn’t have a Christmas tree in our house (unlike her brother and sister) and I was happily delighted to not have to do that chore every holiday season! Then I found out that she had these ideas about decorating for Chanukkah (The Jews response to Christians decorating for Christmas I believe). When I was a kid, I don’t remember my Jewish friend’s parents decorating anything. I just recall their menorahs and prayer shawls. So, now we have shiny banners and sparkly hangings and strings of dreidel lights strung up on the walls... like if a detonated Christmas tree vaporized, flinging it’s decorations out to stick on the walls. It’s really okay and I do like how excited Liz gets about putting all these things up and enjoying them. I especially like the Chanukkah guest towels hanging in our western bathroom with the saloon shutters and Al Harris brood mare painting on the wall. It’s a Cowboy Chanukkah around here.
I arrived home after the first round of gin and tonics and the festivities were in full swing. The younger children were shrieking; the girls were running about being giggly pre-teens; and the adults were finishing their drinks and watching Liz complete the feast of the night. The new puppy, Chelsea, was fairly subdued from her usual frisky self, probably because it is her first party and the noise and running boys are a bit overwhelming. She was spending her time being cuddled by one adult at a time, going from John to Jen to Larry to me. There were snacks that I immediately sat and munched on cause I’m always famished when I come home.
We rounded up the kids and lit one candle and the Shamash (the lead candle) on four menorahs, and according to Maya there is one for each kid! Lighting eight candles warmed up the room so much that we finally had to turn on the air conditioner to cool us off. The two bat-mitzvah-studying girls sang the Chanukkah prayers and we adults stood back and delighted at their high but perfectly pitched voices.
Present opening was quick and furious and David (4) asked after the five minute furry, “Is that all? I don’t have any more presents…”. This part of Chanukkah equals one-for-one gift exchange and that is, in my way of thinking, less materialistic than my experience of past Christmas mornings. Spreading the Festival of Lights out over the eight days of the lighting of the menorah also spreads out the gift giving and receiving and somehow keeps more of the religious significance in the holiday. That’s the way I see it. Tracy Rich*** sees it quite differently: “It is bitterly ironic that this holiday, which has its roots in a revolution against assimilation and the suppression of Jewish religion, has become the most assimilated, secular holiday on our calendar.” I see Tracy’s point and at the same time, I am considering Chanukkah from the perspective of a person raised with Christmas and Christianity.
The feast was delicious, as usual, and the kids got to decorate dreidel cookies with electric blue frosting after dinner. Once the cookies were devoured the children resumed their running and shrieking behaviors.
Notes: In at 74.2 and out at 72.1 Kgs.
*Folkways online @ http://www.kut.org/music/show/2
**Mick Kipp’s cayenne pepper with chocolate salsa http://www.npr.org/templates/story/story.php?storyId=6636057
***Rich, T.R. (2005) Chanukkah. Retrieved online December 17th from Judaism 101 at http://www.jewfaq.org/holiday7.htm
El Milagro: Matt cannulated me today and I sat there for my four hours being really bored. Matt was telling me all about how he has never infiltrated anyone and just basically very yacky. Later I heard him tell another patient that he is ADD and off his meds. Aha!
I had forgotten a book I was going to read and there is really not much on TV on Tuesdays, aside from the news. I thought about Wildhairs Chelsea and how much additional work is involved in having a new puppy invading the house.
I was somewhat fidgety tonight… which hasn’t happened in awhile. I think maybe I’m fidgety because there is still so much to do to prepare for having everyone over for the family Chanukah celebration next Saturday. I still have shopping to do, wrapping, getting our holiday picture session set up, taken and put in cards, etc. etc.
Later: When I got home Liz reported that the puppy has discovered how to open the crate door and escape: she was running around the house like a crazy dog when Liz and Shayna got home. Evidently she hasn't been out long, since the house is still intact. At first we thought that someone left the crate open, but upon inspection, I could tell that it is really pretty easy to knock the latch in a way that allows it to slide to the open position. You would think that some engineer in the design department woulda been able to visualize puppies opening the crate… I didn’t inspect it when we got it because I just assumed… So, we got a clip from the garage and now the door can be secured so that little terrier stays safe while we're gone!
Notes: In at 74.3 and out at 72.1 Kgs.
Morning: Before going for dialysis at 1 pm (today we are all officially early so the staff can have their annual Holiday Party tonight), I drove down to Lockhart to pick up Shayna’s big Hanukkah present, a little cairn terrier puppy. The plan was to pick up the puppy, drive to Kim’s house and drop off the puppy, go to the pet store for all the puppy supplies, take the puppy supplies back to Kim’s, and then leave the puppy there until next Saturday.
But, on the way back to Austin, with the puppy laying in my lap, I decided we should bring her home today, so I took the puppy to Kim’s, went to get Katie (as my co-conspirator and gift giver), went to the pet store for the puppy supplies, got the puppy from Kim, and went home.
Well, of course, Katie had to go to get ready for work at 1 and I had to be at El Milagro at 1 so there we were waiting for Liz and Shayna to get home from services…. and waiting for them some more… and trying to call them to see what time they’d be home… and then waiting for them some more. They finally got there at about 12:30 so we had a few minutes to celebrate and watch Shayna’s surprise before getting on with the day’s business.
Shayna was surprised!
El Milagro: I got in a few minutes late and found out Matt had tried to call me in at 11 or so. Got hooked up and watched MSU beat BYU 76-61. My dad is happy and I thought of him watching while I was watching. My BP was low again at the end of dialysis (95/52) so I had to wait awhile before leaving. I’m gonna have to check with Moritz about changing my BP meds: I came in today with a BP of 105/70, without taking any meds today. Makes me wonder if I still need them.
Later: Shayna went out to a birthday sleep-over and Liz and I had tickets for Kelly Willis & Bruce Robison at the Paramount so we put the puppy in her crate and hoped for the best. When we got home at midnight, she was fine and happy to see us.
Notes: In at 74.2 and out at 72.4 Kgs.
Warning: Body Functions Ahead: This post is not for the faint of heart!
Last Night: In continuing our holiday partying, we took Shayna to see the Gizmo Guys* at the Parmount Theatre yesterday afternoon. We got outa there about 5 and decided to continue our downtown holiday revelry by going to Hut’s to eat. We celebrated with Hut’s** famous hamburgers, where I broke my diet rules (holiday hoopla) by drinking a Shiner Bock and eating FRENCH FRIES. I duitfully took my binders afterwards and all was well.
Well, at 1 o’clock in the morning, the result of my binders binding with the phosphorus made me have the urge to have a bowel movement. I ran to the toilet and began blowing out the phosphorus in the beer and fries. This continued for awhile and then I climbed back into bed to resume my snooze.
Then at 3:30 I was up and at it again. Then at 4:45 I was up and at it again. Then at 7:30 I got up… and immediately had that urge again. What a busy night my bowels had!
And, my recommendation for all of you dialysis people: Stick to your diet and don’t cheat on French fries.
Notes: *The Gizmo Guys website available online at http://thegizmoguys.com/
** The Chronicle on Hut’s available online at http://www.austinchronicle.com/gyrobase/Guides/Location?GuideLevel=Food&oid=oid:45148
Early Afternoon: Matt the pierced tech called about 1 to ask if I could come in early, which was excellent, since we have Steve’s annual X-mas party to go to tonight.
El Milagro: Matt stuck me quickly and efficiently and I settled back to watch the new UT basketball team (4 freshmen and one sophomore) loose to Gonzaga by 10 points. It was okay even though we lost because it was exciting to just see the new team play… they are gonna be enjoyable to watch and they will improve over the season. They need to work on their defense but they have some shooters that are incredible (like Abrams and they have possibly the best forward in college right now in Kevin Durant, who scored 29 points. So, that’s my Longhorn Basketball Report for today!
And oh yeah…. BASKETBALL season is HERE! My favorite TV watching season of all.
Later: All the usual suspects were at Steve’s X-mas party this year (You know who you are). I didn’t get outdoors quick enough to avoid cat dander attacking me, but we still had a good time. Every year at this gathering, I get my food and drink and immediatly head out to the back patio, since these guys have about 10 cats or maybe less but my allergies tell me its at least 10. As usual, the food was great (turkey, brisket, meatballs, etc.); the visits with friends from LifeWorks were lively, and the back yard fire pit and outdoor TV watching (Oklahoma vs. Nebraska) was entertaining. An added delight was running into Ben from our Kerrville Kitchen Krew, who knows Steve from some local pub hangout.
Shayna won $20 in the annual kids’ contest, which wasn’t a counting contest this year, but holiday-related worksheets including a word-find game, brought on by a visiting teacher. The kids were somewhat disappointed about the school-like activities, but happy to win money. Later Shayna and Maya went around the house counting cats in the decorations in the lavishly-decorated house. Later they roasted marshmallows and made s'mores out by the fire. A great time was had by all... thanks Steve & Marylou!
That's it for now.
Notes: First readers, see August for a Welcome Post
As my donation to Turkey Day, for any of you who are preparing a Thanksgiving dinner for people on dialysis here are some recommendations of foods you can prepare*:
Proteins: Turkey, roasted/baked chicken, seafood, pork.
Vegetables: Green bean casserole, salad, cranberry sauce, glazed carrots, corn, zucchini, mixed vegetables, leached mashed potatoes, rice pilaf, cauliflower.
Starches: Plain bread rolls or sticks, 1/2 c mashed potato or sweet potato casserole (soaked), noodles, pasta dishes without cheese.
Beverages: Glass of wine, clear sodas or root beer, water, iced tea/coffee, lemonade.
Desserts: Pies: lemon, strawberry, and other fruits (no nuts); peach/cranberry/cherry cobbler; pound cake, shortbread, angel food cake; jello.
Foods to Avoid: Mashed potatoes, macaroni & cheese, corn bread stuffing, ham, whole grain breads, beer, dark sodas, pecan pie, chocolates, ice cream, and chocolate chip cookies.
Later after a great turkey dinner: It wouldn’t be Thanksgiving without spending at least a few minutes recalling all that I am thankful for right here and now in 2006. It is easy for many of us American humans to say our thanks from a position of having “everything” in the view of most of the world. And yet, when we say thanks we are thinking mostly about the less materialistic commodities; perhaps because these things are so common to us in our opulence. I paged through a user’s list of “things we’re thankful for” on a popular browser and found most of the responders thankful for family, health, and friends. If we ask people in the third world would they say they are thankful for the little food they have? Would people in Mali be thankful for foreign aid, their ability to make pottery, the few fish they can catch? Or would they too say they are thankful for friends and family? Even though some are starving, would they say they are thankful for health. Would they say they are thankful for just being alive?
Speaking of being thankful for health, even though in many people’s eyes I am sickly and from a medical perspective "on the edge of life" and depending upon a machine to keep me alive, I am thankful for my health. It is my health that helps me to manage and cope with my disability. When I see where I stand in the continuum of people on dialysis in my center, I am very thankful that I am one of the healthiest ones in there. I am thankful for those machines and for the people who serve us in the center; the nurses, the techs, the social workers, and the doctors. They are becoming “friends” in a way.
And, like all the other Opulent Americans, I am thankful for my family; primarily my partner and main squeeze, Liz. I can’t even say how thankful I am for her… because there are no words to express how lucky I am to have a partner in this adventure. And, of course, I am thankful for the kids’ existence: it warms me inside when I'm thinking about Johnny’s Hawaiian adventure, Katie’s determined confrontation with liberty, and Shayna’s “latency phase” in which she and I wrestle, kid each other, and do chores and school projects together. I am thankful for the rest of my family, in-laws, and friends… you all know who you are… “Thanks for being there for me when I need you!” And BTW… please stay there for me to lean on when I need to in the future. (I’m waxing emotional)
Finally, I am thankful for my work. I have always thought of my work in the way that Hanna Arendt** describes the difference between ‘work’ and ‘labor’ in The Human Condition***. For Arendt ‘work’ is one’s life work (vita activa) and I am fortunate to have work that is a joy to engage in on almost a daily basis. Whether it includes my writing, my artwork, or my training social workers, I find it to be a service to the world at large and that seems to me to be a blessing in the truest sense. I do remember that "all the blessings already are".
So, there you have it: my thanksgiving thanks list.
And lastly, of course, anyone who reads this blog on a regular, irregular, or lurking basis, I thank you for being interested in these writings.
Remember, “La conversación es el pasto del alma”.
Notes: *Special thanks to Jennifer the Dietician for preparing the above list.
**Hanna Arendt. retreived November 23rd online from Wikipedia at http://en.wikipedia.org/wiki/Hannah_Arendt
***Arendt, H. (1958) The human condition. Chicago: University of Chicago Press.
Morning: Today I have to confess to Jennifer the Dietician that on Monday, when I told her I had taken my Sensipar last night, I was wrong. When I got home on Monday night and popped open my daily pill organizer to take my evening pills, I noticed that last night’s pills (sensipar and 2 others) were still in there. When I forget to take them, I only notice when I open the organizer box the next time… but for some reason I didn’t notice the next morning. At any rate, she had blood work done on Monday to check my phosphorous and it’ll probably be high, since I didn’t take the sensipar. Today she’ll come to me with my blood rating from Monday and we’ll have to have it out about my irresponsibility about taking my meds.
El Milagro: Heather stuck me today, politely asking if it was okay for her to stick me. She continued that she wouldn’t want any old stranger sticking her, and I replied, “Well, you seem to be okay… I’ll let you know if you screw it up.” She said she usually works at Moncrief’s DaVita center and is filling in here today for the folks out for T-day. Then she reported that she is Matt’s girlfriend and I had to say, “Oh, well that’s different. Now I’m not sure of the choices you make”; to which she retorts, “Yeah. Maybe I shouldn’t tell people that!”, and I decided she was okay. She stuck me pretty good although she wiggled the needle around somewhat to get a good flow, and that hurt.
Jennifer the Dietician came up and reported that my Phosphorous is getting better. I told her about not taking the Sensipar the night before, and she was a little surprised. We agreed to keep watch for another month before we decide to up the Sensipar by 30 mgs. Kim the Vietnamese Nurse (the first person who ever cannulated me) was standing there too, and she thinks I am taking a lot of Sensipar, as evidenced by her eyebrows arching up when Jennifer was talking about uping them.
Detailed Nutrition Report
Albumin ~ 3.8 (Goal = 4.8 or higher) This is my stored protein.
nPCR HD UKM ~ 1.27 (Goal = 1.0 or higher) This is my protein intake and calories.
HCT CALC ~ 36.6 (Goal = 33 or higher) This is my red blood cell count.
Iron Saturation ~ 49 (Goal = 20 – 50%) This is the amount of iron that maintains my red
blood cell count.
Ferritin ~ 146 (Goal = 100 – 800) This is my stored iron.
Calc. Crctd ~ 8.4 (Goal = 8.4 – 9.4) This is my calcium.
Phosphorus ~ 6.7 (Goal = 3.5 – 5.5) This is my phosphorus level, which is traditionally too high, although it is lowering; last time it was 7.7.
CaxPhos Crctd ~ 71.6 (Goal is less than 55) This is the calcium X phosphorus = product, which
is one way high phosphorus is not good for me and is controlled by binders and Sensipar.
PTH Intact ~ 421 (Goal is 150 – 300) This is my parathyroid hormone level which is helped by taking my binders and Sensipar.
Potassium ~ 4.6 (Goal = 3.5 – 5.5) This is my potassium level, which goes back and forth and right now is good.
KT/V UKM Delivered ~ 1.68 (Optimal is 1.4 or higher) This is the rating of the adequacy of the dialysis: how good it is doing at cleaning my blood.
Notes: In at 73.8 and out at 71.3 Kg.
The Nutrition Report is included for people like Tom T and my son, Johnny, who can read, understand, and are interested in these things.
El Milagro: We’re on an “off” schedule this week because of turkey day and the center being closed on Thursday. So, I am coming in on Monday, Wednesday, and Saturday this week. Diane stuck me today, rather quickly and roughly… I can tell when she has something else on her mind cause she just rushes through the procedure as if I’m a manikin.
On the ABC News tonight there is a story about a five-way kidney swap. Herman watched it with me and I wondered how they can do this, cause I thought that kind of swap thing (kidney paired donation) was against the law. But, according to the article following the news report*:
“According to statistics from the United Network for Organ Sharing, 68,934 patients in the United States are currently on the waiting list for donated kidneys. Because of a shortage of donors, 3,886 patients — more than 10 a day — died in 2004 while waiting for a kidney, according to statistics compiled by the National Kidney Foundation.
“Experts said chain-reaction surgeries like this one could help solve the problem.
"This represents a significant step in advancing our ability to identify living kidney donors for potential transplant recipients," said Dr. Bryan Becker, section chief of nephrology at the University of Wisconsin-Madison. "This also demonstrates a significant institutional commitment from Johns Hopkins to align the necessary resources to do this."
Now I have to go back and research what it is that is actually against the law. Maybe this operation was possible through the work of “altruistic donors” wanting to donate kidneys, rather than kidney transplant patients finding the donors or something. I’ll report more about this as I find out.
That’s all for today.
Notes: In at 75.6 and out at 71.6 Kg.
* Childs, D. (2006) Doctors perform historic five way swap. Retrieved online November 21 from ABC News at http://abcnews.go.com/Health/story?id=2668053&page=1
Island Dialysis: Liz drove me over to Island Dialysis, on Broadway, at 6:15 am this morning. We are here in Galveston for my agency’s board of director’s annual retreat; where they look at the short and long-term directions of the agency, focus and refocus our focus, and update and take on new tasks in each of the committees. We got in late last night and I am doing dialysis here before going to meet with the board for the rest of the day and until noon tomorrow.
Island Dialysis is an unsuspecting store front in a third generation strip mall on the way out of town toward Houston. It is a bit larger than El Milagro, but less crowded it seems. Some things are the same as El Milagro… since both are operated by DaVita: the new translucent yellow paper gowns the staff wear when the bosses are around; the basic procedures; and the staff / customer attention behaviors. The charge nurse introduces herself and the techs who will stick me and watch over me. They are all friendly and much more awake than I am at this hour of the morning. Oh yeah! I haven’t had any coffee today. No wonder I am so dull when the tech asks about my low BP. I just look at her and say… “Uhhh, I do have low BP sometimes… but I don’t know about the mornings, since I don’t check it in the mornings.” Right now it is like 106 over 68 or something similar. Since I’m so fuzzy anyway, how can I tell the actual numbers? But it was low. During my time here today it gets lower and higher throughout my session and I remember November 11th it was low too. They ask the normal question of whether I’ve taken my BP meds and I am quite sure I haven’t and say so. Heck! Its 6:30 in the morning. What do I know? I feel like my Austin nurse Phyllis shoulda pinned a note on me for these people. Really though… they are very nice and just trying to do a good job on me.
The tech sticks me easily and I am there, looking around to see what its like. The chairs are light green and when the recline they actually don’t change their angle of seating: they just lean back and there you are reclining in a sitting position. When I throw my blanket over my feet, the chair pops up and I’m sitting upright again. So I have to push against the back and pull my knees up to my chest to fall back into the reclining position. I watch the old Audie Murphy western, Destry*, based on the original Tom Destry movie, Destry Rides Again. By the time I’m done, my BP is okay and I walk out to meet Liz and Shayna, who take me over to The Children’s Center for the board meeting.
The Meeting: I walk in as the board is taking a break, and immediately face a few members; one of whom says, “What happened? Did you cut yourself?” pointing at my bound up fistula. I say something about being on dialysis and there is a gasp and now it is officially public information with more of the board. Thankfully, the meeting is about to start again, so I don’t have to explain everything. I will tell them all to come here for the review, one-at-a-time, as they ask.
Saturday: While I am participating in the board meeting, Shayna and Liz are able to go down to the beach a couple times to collect shells, eat lunch at The Rainforest Café**, go horseback riding on the beach, and swim at the hotel pool. We get out a little early and I shoot up to our room to catch a bit of the Michigan / Ohio State game.
Then we are all off to our federal contract administrator’s (Ralph) place on the bayside on a canal. Shayna, Liz, and I get to go out into the bay on his 35’ fishing boat and it is the perfect end to a perfect day for the girls. That's Shayna in the sunset picture at right ----->
Notes: New Readers --> Click on August for a Welcome Post
El Milagro: I got in a few minutes late today, which was okay because it took the techs about 15 minutes before they could get to me, since all 4 o’clocks are coming in at the same time. Carol cannulated me smoothly… this is generally becoming like a non-consequential habit and I am getting tired of writing about it here every time; “So and so stuck me...blah blah blah…” It’s becoming such a normal thing that if it were a individual, personal thing I would say it’s like zipping up my pants or turning out the light or unplugging the flatiron. These are things that I do automatically and usually don’t give them a second thought. Getting cannulated is now like these things except it takes two people. So, I guess I could say its like saying “Hello” or shaking hands, which I generally do with another person. When I am saying “Hello” to myself that might be worth writing about. These situations are usually automatic behaviors subconsciously executed without much thought. Since getting stuck has become like shaking hands, it seems rather obtuse to write about it every time I write these posts. So, maybe that part will drift out of these writings.
These days I am reconsidering what I do want to write about in these posts. I do want to continue writing about my experiences in dialysis… perhaps just not so specifically that I am writing down every little thing that happens, like a process recording.
Today is election day and being here and watching the election returns is exactly what I want to do; even though the Texas election scene isn’t like the rest of the country. Nothin’ in Texas is like the rest of the country, although Austin comes closer. In my district, all Democrats won: Lloyd Doggett, Valinda Bolton, and Mark Strama. On the state scene it looks like both Friedman and Strayhorn took some votes from Chris Bell; and the staunch Republicans all went for Perry. I was surprised at Bell’s showing though… and he mighta coulda won if it hadn’t been for the votes to the independents. It looks like we are in for another governatorial term of social service cuts (Perry’s 10% per agency cut) and Medicaid graft (Accenture Fiasco). We’ll see what the legislature does next session.
Butch Hancock wrote this year’s election song; That Great Election Day
“Who’s gonna be the master and who’s gonna be the slave
On that day… on that great election day?
Who’s gonna vote their conscience… and who’s gonna count the votes
On that day… on that great election day?
Get your little body to the pollin’ place and mark your ballot well
Sit yourself down in a votin’ booth and mark your ballots well
On that day… on that great election day.
Now I ain’t gonna vote for a man or woman who’s full of lies and fear
No no… ain’t gonna vote for man nor woman who’s full of lies and fear
I ain’t gonna vote for man nor beast who’s full of lies and fear
On that day… on that great election day.
I’ll save my vote for a man or woman who has a plan for peace
I’ll save my vote for a man or woman who lives and works for peace
I’m gonna vote for a man or woman who’s heart is aimed at peace
On that day… on that great election day”
El Milagro: Carol stuck me today and I waited around anxiously for the UT - OSU game to start at 6... and then watched almost all of it. UT looked great throughout the game. The dialysis center wasn't full when I arrived today. Jo was supervising and had worked people through efficiently. By the time I came in at 4, there were a number of empty chairs and by the time I left at about 8:30, I was one of the last ones out.
Later: After dialysis I picked my eldest daughter, Katie, up and took her to dinner at Texas Roadhouse for a steak. We sat right beside a large screen TV and saw the end of the game while eating. Since Liz & Shayna are in Houston visiting NASA overnight, it was a good time to spend some time with KT. She caught me up on her activities and school and we had a good visit.
Notes: In at 73.8 and out at 72.1 Kg.
New Readers: Click on August for a Welcome Post
El Milagro: What could be scarier than the idea of being in a spooky place where they suck your blood out of your body, squish it through a creepy, squeaky machine and then inject it back into your prostrate, limp body? As I lay there in the dim, orangish Halloween light, I thought these dreary thoughts as Diana stuck those huge hollow needles into my bulbous vein. The blood squirted out the sides of the puncture hole and she cackled fiendishly as she wiped up the spill. I noticed her rubberized hands all white and ghostly and smeared with my blood, still oozing out along the wound. The vein was throbbing, causing the needle to jump furiously until she tapped it down tightly to secure the tubes. The red tubes move and sway as if they are alive and the blood pulses through them on its’ morbid journey.
I watch with a curious despondency and then pass out… drifting into a fitful sleep while my blood flows through the cleansing machine.
Notes: In at 75.9 and out at 72.0 Kg.
Scary Picture: I finally got the picture of my "infiltrated" arm on the blog... see it by clicking on April, Post # 4.
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. New Readers --> See "WELCOME NEW READERS" by clicking on August in the Archives.
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.
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.
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/
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.
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/
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 since, 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 and 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.
New Readers: See Post # 47: WELCOME NEW READERS by clicking August on the Sidebar.
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.
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.
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 http://www.jewfaq.org/holiday4.htm
El Milagro: Matt stuck me today. They are more-or-less back on time these days, and have integrated the computers into their work. I got back to reading David’s novel*, which I must admit, was boring enough that I put it down several weeks ago. But I want to read it because it is about people who are raised to provide organs for the general population. Of course, you don’t figure that out for the first 95 pages or so. And those first 95 pages are all about a young girl’s perspective of boarding school. So, anyway I picked it back up today and got into the part where she is describing how they first started figuring out that they are different, and that they are being raised for organ harvesting. Cool! Now I can get into the book maybe.
I read a few chapters and thought I’ld catch a few winks before Survivor. All of a sudden, Moritz & Minions are looming there in front of my prostrate body. They all looked down at me and passed their judgement: I am alive, but I need more medication to be truly well balanced medically. I am still off balance in the PTH department.** They decreed I should add another dose of Sensipar to my pile of medications, and Jennifer the Dietician stayed briefly to explain to me about it. (For more on this, see Post # 43 in August)
Survivor has thrown the formerly culturally segregated tribes back into a heap and separated them into groups with equal numbers of men and women… boring. And now they are off again, creating alliances and picking losers to cast off the island. This may be the last one I watch.
Right near the end of my session, the woman next to me yelped out and jumped up, begging, “Take me off! Take me off?” Herman, Debbie, and Ron were there in seconds putting her back in her chair, with Herman holding her feet (cramps) and Ron trying to assess her; “Hello ___. Are you there? Can you hear me?” She may have passed out. The staff quickly assessed that she is diabetic and Herman rushed her an insulin shot and she slowly came around. I noticed how quiet and dis-interested all the other people became. No one wants to see anyone in pain around here. Twenty minutes later she still didn’t seem all together to me, but they let her wander out to find her ride.
Notes: In at 74.0 Kg. and out at 72.1 Kg.
* Ishiguro, K. (2005) Never let me go. New York: Vintage Books
** chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478
El Milagro: Diane cannulated me today. I read, dozed, and woke up facing Dr. Moritz and Ron the Nurse, doing their rounds. So I said, “Well, what’s the report?” and Moritz looked at my machine and replied something like, “Good BP” and Ron added, “You’re doing good.” and they moved off to the right.
About 15 minutes before the end of my session, I started getting leg cramps unlike any I have had before. I first noticed that my left foot was bent up like I was stretching my Achilles tendon and I couldn’t point it down. Then as I was bending it down with my hand, the cramping pain came all up and down my calf. And then, before I could do anything to alleviate it, the other leg did the same thing. I called to Diane, who came over and adjusted my machine to give me more saline but the cramps continued. I’m sitting there cramping and wiggling around trying to get away from the pain and I’m thinking, “I am not going to be one of those people who moan and groan all over the place.” So, finally Herman comes over and tells Diane to stop the dialysis cause I only have 15 minutes. He gets me to stand up and that helps my legs, but then I start feeling the cold sweat and faintness coming on. “Uh… Herman, I think I’m going to faint” I mumble. “Well, sit down then…” he replies, pushing the button to check my BP… it’s 109 over 60 something (or maybe 70 something). Im feeling woozy and crampy and wishing I were somewhere else. And where ever I’m wishing I was is a place without wooze and cramps*. Herman says, “I just want you to sit here awhile. I’m stopping the saline cause I don’t want to fill you back up with liquid.” Diane de-cannulates me and I sit there trying to catch up with NOVA (which I had been watching before this whole thing started). Finally I’m feeling better after about five minutes and I actually get outa there a few minutes early.
Tonight has been one of those experiences that I’m glad I don’t have too often and it makes me more sympathetic with the folks here that have cramping more frequently than I. There is pain involved with many of these folks and we are all each other's witnesses. I am thankful that out of all the people at the center, I continue to be one of the most outwardly healthy ones. Onward through the fog!
Notes: In at 75.4 Kg. and out at 72.6Kg.
(My dry weight is supposed to be 71.5 Kg. so they must have put 1.1 Kg. of saline back in.)
*See post #33 in July for a specific discussion of cramps in hemodialysis.
Morning: At Rosh Hashanah services this morning I am reminded of all the things I have to be grateful for: family (including the best wife in the world, a son that makes me proud, two beautiful daughters, a mother-in-law who’s like my own mom, and a dad who keeps me on the straight and narrow); a great job; a comfy home; exceptional friends (you know who you are); enough money; and my faithful T-100 with new mud tires. These services also ask us to remember our sins and blunders from the past year and as the Rabbi and congregation are listing them aloud, Liz and I are nudging each other when the listed wrongs are familiar, mostly meaning I have done them. Rosh Hashanah, the Jewish New Year, “is a time to begin introspection, looking back at the mistakes of the past year and planning the changes to make in the new year.”* This practice continues for the 10 days between Rosh Hashanah and Yom Kippur, the Day of Atonement.
At the end of services, we rush over to Cari and Stuart’s for their annual luncheon, seeing folks we usually see at the folk festival. Liz and I sit at the kids’ table today with kids that have grown up too fast. Stuart’s brother-in-law (the doctor) and I discuss my kidney situation and Stuart tells me about some consulting he has done with the local bus company, related to the timing of their free service of running special busses by all the dialysis centers to transport patients. We have an excellent meal of barbecued salmon, kugel, salad, and apple cake and then rush off so I can make my dialysis time and Liz and Shayna can prepare for Shayna’s 10th Birthday Party at the roller skating rink.
El Milagro: After rushing to the center to be on time, I had to wait about 20 minutes to get in my chair! Matt stuck me today and I immediately turned my TV channel to the UT game, watching the team do a fairly good job of beating Iowa State before the game was stopped because of lightning in the area (first Memorial Stadium game stopped since 1996). Although ABC kept promising to come back to the game, they never did and we ended up watching Michigan State beat Notre Dame (37 to 21)... for three quarters! Yeah Spartans! And then, in the last two minutes the Irish came back and beat MSU 40 to 37. Sorry, Dad... But, you know, it really looked like the Spartans were gonna beat them for most of the game.
While we were watching the storm roll through I asked Herman what they do when the electricity goes off. Herman explained that for the first 20 minutes or so, they just wait for the electricity to come back on. The center doesn’t have any emergency generators, so the machines stop. Then, after 20 minutes, if the power hasn’t returned, the staff hand crank the blood in each machine back into the body of each person. Then the staff de-cannulate each person and send them home. Herman said that hasn’t happened much, although the power goes off frequently for a few minutes.
I heard later that Shayna’s skating party up in north Austin was flooded out. When the girls got to the skating rink it was all dark and the skaters were hanging out in the parking lot (including Y. Cheryl's daughter). Luckily Liz was able to find another skate arena that had an opening for a party so they just carted the seven girls over to the other skating rink and carried on. Most of the girls came to our house for a slumber party afterwards, clearing the living room of furniture and watching movies until Liz pulled the party plug at 1 a.m. What a busy day... and, so it goes.
Notes: In at 73.8 Kg. and out at 71.9 Kg.
* Rich, T. R. (2005) Rosh Hashanah. Retrieved September 21 from the Judaism 101 website; online at http://www.jewfaq.org/holiday2.htm
El Milagro: Diane stuck me today. I dozed and woke up before the news. One of the staff walked by and mentioned, “The collective is coming”. Of course, I had already seen them: Dr. Moritz, Ron the Nurse, and Jennifer the Dietician making their rounds. Moritz was smiling a lot and seemingly joking with his patients while Ron and Jennifer stood on either side of him, like lieutenants waiting for orders.
When they got to me, I leaned forward and shook Moritz’s hand and said something like “how ya doing big boy.”, to which he replied, “fine, how about you?”. Jennifer the Dietician reported on my last lab work, concluding that my phosphorous is coming down, etc. Dr. Moritz said, “Good. Stay the course.”, or maybe just nodded his head… I can’t remember which. I told them I was responsible for my potassium going up by cheating on French fries and J the D said, “It’s not that high” and then cautioned me that French fries also have phosphorous. Moritz just frowned and shook his head.
I only got to see half of Survivor tonight but I knew the heavy metal guy was doomed from the start. Is that a sign? In his little speech after being voted off, he said, “I would’ve done better if there was a heavy metal (cultural) group” and that got me to thinking… when an external entity selects your “culture” for you they usually do it on different variables than those upon which you would self-select yourself. The lesson here is to ask and listen to how people describe their culture rather than pigeon-hole them by your own definitions. And that’s the way I see it.
Notes: In at 73.6 Kg. and out at 71.8 Kg.
El Milagro: Canoodled by Chris today. I dozed off for a nap and when I awoke, my lab report was on my tray, with a note from Jennifer the Dietician saying we can talk about it later because she didn’t want to wake me up. Noticed my phosphorous is still high but coming down, and my potassium is creeping up again.
I must admit, since I have been on dialysis, my potassium numbers have been so good that I have allowed some French fries and potato chips into my system from time to time. At first it was just one or two off someone’s plate. But slowly it became more than one or two… until it was five or six and then maybe a small bag of potato chips. I was watching the numbers and they stayed low so I just began to forget about not eating potatoes. Well, this time my potassium number was just over the acceptable, so I have to back off the potato chips and fries again. Damn!
Notes: In at 75.5 Kg. and out at 72.5Kg.
Morning: Liz, Shayna, and I joined about 80 other people at Town Lake this morning to Walk for PKD*. I am surprised that Liz and Shayna actually got me down there… I am not the “walk for a cure” type cowboy. But when I got there (maybe about 20 minutes into it) I was happy I had shown up. There were plenty of PKD Families and some people whose fistulas I could see. We stood around for some time “gathering” and then a big guy talked about some facts about PKD ("only about half the people who have PKD know it, and only 1 person out of 1000 has even heard about it") and then a little woman who is a national poobah talked about how wonderful the turnout is and what good work the foundation is doing. Connie the Nurse and another of Moritz’s staff were there to support the walk. Connie said this is her third walk and I said I was surprised I am here. Then we all got behind a line and took off, walking east down the bike path. Shayna and some kids ran ahead out of sight and we never saw hide-nor-hair of her until we got back. She reported later she was second getting back… very competitive of her.
So we’re walking along and every so often there’s a little white and turquoise sign about PKD facts, like Burma shave signs. Lizzie, for the first time ever, is outpacing me in walking and I have to ask her to slow down once in awhile. I’m thinking it is a nice thing to walk with your main squeeze down a path, just taking in the sights and talking. Soon we come upon a commotion and someone has discovered a water moccasin along the left side of the path. Kids are excited and every adult cautiously walks by telling the kids things like “that snake’s poisonous! Leave it alone!”. We begin to wonder where Shayna is. When we get to the end of the path the group goes all woogly wiggly and dispurses in several different veins, not really knowing the route of turning around. Liz and I walk around a softball field with girls playing, looking for Shayna. Then we head back and by the time we get back we finally see Shayna waiting at the end, excited to tell us she was second. Cold water and standing around ensue and more speeches and Liz buys me a PKD hat. Shayna is thinking about taking PKD on as her Bat Mitzvah project and I think that’ld be cool. We drive outa there and head over to Maria’s Tacos for breakfast tacos.
El Milagro: I got in today at NOON. Chris cannulated me today and the return needle was painful most of the time I was being dialated: even upon dis-cannulation, it burned… so, who knows what that was all about… but I’d just as soon not do it again. I looks like staff are getting used to using the computers rather than the clip board sheets. All seems fairly quiet today. There is some guy here today who must be having painful cramps because every once in awhile he yells out “Owwww”.
I watch several football games at once, mostly enjoying Michigan creaming Notre Dame, while rethinking the morning walk. I should get more involved with this PKD thing, me thinks. I was re-surprised this morning about how PKD is so grossly under-funded compared to less prevalent diseases.
“PKD is the most common, life-threatening genetic disease, affecting more than 60,000 Americans… more people than cystic fibrosis, muscular dystrophy, hemophilia, down syndrome, and sickle cell anemia combined.”** Think about that!
Notes: In at 73.0 Kg. and out at 71.8 Kg.
*Walk for PKD (2006) Retrieved Sept. 16 from the PKD Cure website at http://www.pkdcure.org/site/PageServer?pagename=pkdwlk_homepage
**Learning About Polycystic Kidney Disease. (2006) Retrieved Sept. 16 from the PKD Cure website at http://www.pkdcure.org/site/PageServer?pagename=pkdabt_aboutPkd