July 25, 2006
Tuesday
El Milagro: As I’m driving over here today, I feel as if I’m coming off vacation. I haven’t been here since Saturday… and that’s two days! It makes me chuckle to think that a two-day break from dialysis gives me some sense of a break from the tedium of going every other day. But when I get done on Saturday I usually think, “That’s done and I don’t have to come back for two whole days! Yippee!”
Today I got here right on time and had to wait for over 30 minutes for a chair. They’re in one of their rushing around modes today. Finally I got my chair and Gladys cannulated me. The place was full and it seems like there are new people everywhere. One woman, who is over-dressed for dialysis in my opinion, and wears shades throughout, was sitting by me today. I hallucinate that she must be someone important or maybe she is a doctor. She demands staff to come to give her cups of ice, to adjust her chair, and even to adjust her machine. She just yells out, “Eloy. I need…… “. At one point I notice her reaching over and doing some adjustment to her machine herself. That’s interesting! Also, there’s a new guy who looks a little like a younger Kirk Douglas as he looked in the movie Lonely are the Brave (1962). He has a AV Graft in his upper chest. “The AV graft is … an under the skin connection of an artery and vein (in which) man-made tubing connects the artery and vein. The soft, plastic-like tube is about one-half inch in diameter and is made from a type of Teflon® or Gore-Tex® material.”*
Jennifer the dietician rolled by to give me the fish report I had asked her for last week. I had forgotten, so when she rolled up and said “I bet you didn’t think I’d remember.” I had no idea what she was talking about. So, the Fish Phosphorus Report is.... salmon, trout, and scallops are high phosphorus; snapper, catfish, and flounder are medium; and halibut, cod, tuna (canned in water) and oysters are low.
I read most of the new Networker on 21st century teens (article by Ron Taffel that pretty much tracks his last book and an interesting adult look at MySpace.com by Mary Sykes Wylie) and watched The Daily Show with John Stewart.
Notes: In at 74.7 Kg, and out at 71.6 Kg.
* Vascular access; your lifeline to hemodialysis. (2005) Retrieved July 25 online from the Davita website at http://www.davita.com/articles/dialysis/index.shtml?id=180
7/26/06
7/23/06
33) Cramping & Jack's Hallucinations
July 22, 2006
Saturday
Morning: Called and talked to Herman, who said they had an opening at 1:30 that I could use. Johnny was here for the last few days (compulsory time off from the stress and intensity of Camp C.A.M.P.*) so he went over my last blood work report and wondered how and why my protein count could be down. We also discussed his financial situation for the fall semester in Hawaii** and looked over his financial aid apps. Although he is unclear about the figures to use as his annual income, John appears confident that he will have enough money for the year in Hawaii, I hallucinate.
El Milagro: Diane cannulated me today and again did a good job. Rosie stopped by and said, “Hi stranger.”; I guess referring to my being in Dallas last week. As she was moving about the center working she kept glancing at me and giving me a little ‘knowing’ smile. But I have to admit, “I know nothing” so these little cutesy eye glances just confused me. I wondered if she had read the blog, or if she was just being friendly, or what it was all about. Rosie is always kind, attentive, and chummy so perhaps I am hallucinating the cutesy eyes thing (I am sure it is not flirtatious).
By “hallucination” I mean thoughts that I have that have no basis in objective empirical observation or verification from the person observed. In family counseling, we challenge students to identify ‘hallucinations’ they are making about their clients; such as thinking the ‘mother is acting this way because of her past abuse’, or ‘the child is angry at their parent and therefore acting out in school’. These are hallucinations because they are based on the counselor’s ideas of how the world works, not on exploration of the client’s thought processes or rationales for behavior. We ask students to listen to the client's story and ask about their ideas about how things got the way they are and their theory of how things might best be changed. Any time we think we know the answer without exploring the other person’s world view, we are hallucinating.
Today there is an older man in the corner chair who is moaning (“Auhhhhhaaaaahhuh” is close to the sound). The staff generally are ignoring him: I notice Herman glance at another staff as the man moans and arch his eyebrows slightly. I hallucinate that this means “just let him moan”. There are two of the man’s relatives (maybe they’re friends) with him and the female occasionally attends to him in his moaning. It may be that part of the moaning is in response to cramping in his legs (I hallucinate). It seems that the female relative is rubbing his legs at times. Staff does go over and attend to the man on their regular schedule of stopping by every 15 minutes or so to mark his chart with numbers from the machine. Later he moaned in a major way when staff picked him up out of the dialysis chair and placed his in a wheelchair to leave.
Today I watch a Hallm
ark movie about ranching in the hill country in Liberty Hill. The landscape doesn’t look like Liberty Hill to me; much more hilly than I remember LH to be. I hallucinate that it is really around Fredricksburg or Johnson City, drift off for a few naps, and think about the visit with Johnny. I look at the clock on the wall at 3:30 and imagine him driving to San Antonio with Helen, who came up to Austin from SA just to pick him up. He is ‘Hombre Importante’ at camp and can find folks to drive for an hour to get him. Also, he’s her boss. They are cruising down the freeway listening to modern rock music and driving too fast to get to the San Antonio all night party that will end when they all arrive back at camp on Sunday morning…… I hallucinate.
Muscle Cramping: “Muscle cramping of the hands, feet, and legs is fairly common on hemodialysis. The cause of muscle cramping is unknown. However, three conditions that seem to increase cramping are: 1) hypotension (low blood pressure); 2) the patient being below dry weight; and 3) use of low sodium dialysis solution.
“Muscle cramps are more commonly associated with low blood pressure. However, some cramping continues even after a normal blood pressure is obtained. In fact, muscle cramping can occur even without a fall in blood pressure. Muscle cramps also can occur when you are below your dry weight. (As the dialysis machine filters fluids out of the system, the patient can fall below their ‘dry weight’ and then muscle cramping can begin). The severe muscle cramping experienced near the end of the dialysis treatment and persisting for a time after dialysis often is due to dehydration."***
Notes: In at 73.5 Kg, and out at 72.7 Kg.
* Children’s Association for Maximum Potential: C.A.M.P. (2006): retrieved May 15 online at
http://www.serve.com/campcamp/
** University of Hawaii at Manoa: retrieved July 22 online at http://www.hawaii.edu/marine_biology/default.htm
*** Problems associated with dialysis (nd) Kidney Patient News: retrieved July 23 online at http://www.kidneypatientnews.org/kpt7.html
Saturday
Morning: Called and talked to Herman, who said they had an opening at 1:30 that I could use. Johnny was here for the last few days (compulsory time off from the stress and intensity of Camp C.A.M.P.*) so he went over my last blood work report and wondered how and why my protein count could be down. We also discussed his financial situation for the fall semester in Hawaii** and looked over his financial aid apps. Although he is unclear about the figures to use as his annual income, John appears confident that he will have enough money for the year in Hawaii, I hallucinate.
El Milagro: Diane cannulated me today and again did a good job. Rosie stopped by and said, “Hi stranger.”; I guess referring to my being in Dallas last week. As she was moving about the center working she kept glancing at me and giving me a little ‘knowing’ smile. But I have to admit, “I know nothing” so these little cutesy eye glances just confused me. I wondered if she had read the blog, or if she was just being friendly, or what it was all about. Rosie is always kind, attentive, and chummy so perhaps I am hallucinating the cutesy eyes thing (I am sure it is not flirtatious).
By “hallucination” I mean thoughts that I have that have no basis in objective empirical observation or verification from the person observed. In family counseling, we challenge students to identify ‘hallucinations’ they are making about their clients; such as thinking the ‘mother is acting this way because of her past abuse’, or ‘the child is angry at their parent and therefore acting out in school’. These are hallucinations because they are based on the counselor’s ideas of how the world works, not on exploration of the client’s thought processes or rationales for behavior. We ask students to listen to the client's story and ask about their ideas about how things got the way they are and their theory of how things might best be changed. Any time we think we know the answer without exploring the other person’s world view, we are hallucinating.
Today there is an older man in the corner chair who is moaning (“Auhhhhhaaaaahhuh” is close to the sound). The staff generally are ignoring him: I notice Herman glance at another staff as the man moans and arch his eyebrows slightly. I hallucinate that this means “just let him moan”. There are two of the man’s relatives (maybe they’re friends) with him and the female occasionally attends to him in his moaning. It may be that part of the moaning is in response to cramping in his legs (I hallucinate). It seems that the female relative is rubbing his legs at times. Staff does go over and attend to the man on their regular schedule of stopping by every 15 minutes or so to mark his chart with numbers from the machine. Later he moaned in a major way when staff picked him up out of the dialysis chair and placed his in a wheelchair to leave.
Today I watch a Hallm
ark movie about ranching in the hill country in Liberty Hill. The landscape doesn’t look like Liberty Hill to me; much more hilly than I remember LH to be. I hallucinate that it is really around Fredricksburg or Johnson City, drift off for a few naps, and think about the visit with Johnny. I look at the clock on the wall at 3:30 and imagine him driving to San Antonio with Helen, who came up to Austin from SA just to pick him up. He is ‘Hombre Importante’ at camp and can find folks to drive for an hour to get him. Also, he’s her boss. They are cruising down the freeway listening to modern rock music and driving too fast to get to the San Antonio all night party that will end when they all arrive back at camp on Sunday morning…… I hallucinate.Muscle Cramping: “Muscle cramping of the hands, feet, and legs is fairly common on hemodialysis. The cause of muscle cramping is unknown. However, three conditions that seem to increase cramping are: 1) hypotension (low blood pressure); 2) the patient being below dry weight; and 3) use of low sodium dialysis solution.
“Muscle cramps are more commonly associated with low blood pressure. However, some cramping continues even after a normal blood pressure is obtained. In fact, muscle cramping can occur even without a fall in blood pressure. Muscle cramps also can occur when you are below your dry weight. (As the dialysis machine filters fluids out of the system, the patient can fall below their ‘dry weight’ and then muscle cramping can begin). The severe muscle cramping experienced near the end of the dialysis treatment and persisting for a time after dialysis often is due to dehydration."***
Notes: In at 73.5 Kg, and out at 72.7 Kg.
* Children’s Association for Maximum Potential: C.A.M.P. (2006): retrieved May 15 online at
http://www.serve.com/campcamp/
** University of Hawaii at Manoa: retrieved July 22 online at http://www.hawaii.edu/marine_biology/default.htm
*** Problems associated with dialysis (nd) Kidney Patient News: retrieved July 23 online at http://www.kidneypatientnews.org/kpt7.html
7/21/06
32) Enchilada Boycott Continues
July 20, 2006
Thursday
Thursday
El Milagro: Diane cannulated me today and did a good job. I was a bit apprehensive since the last few times she has had to call someone over to adjust her stick. Jennifer the dietician scooted by in her rolling chair (staff all appear to like to scoot around the slick linoleum floors on secretary chairs or short stools with wheels on them) and I shared what I had told Laura about my non-enchilada days. Turns out Laura is not Jennifer’s junior: they are equals and Laura has been here much longer than Jennifer. Jennifer just seems to be the head honcho because she is much more gregarious than Laura. Jennifer reported that since I’m not actually getting blood work until next Tuesday (Last Tuesday was for a blood count), I must continue my enchilada, cheese, bean boycott. I agreed somewhat reluctantly. We also talked about why my protein score is going down and she didn’t really have a good idea about that. I did give her an assignment to find out the phosphorus count on the various kinds of fish we can eat (salmon, trout, redfish, snapper, and maybe catfish).
Later Ron the nurse stopped by and gave me the first of a three-series Hepatitis C shot. He had noticed in my record that I don’t have that and said it is a good idea around here to over-protect yourself. “What’s one more shot?” I said. It was an easy session today: watched TV and read the Networker.
Notes: In at 73.6 Kg, and out at 72.1 Kg.
7/20/06
31) Bionic Man Escapes to the 'High Country'
July 18, 2006
Tuesday
El Milagro: Feeling back at home today. Gladys cannulated me without much pain. Staff asked howDallas Dallas
Tuesday
El Milagro: Feeling back at home today. Gladys cannulated me without much pain. Staff asked how
Laura, Jennifer’s junior dietician, stopped by to report on my last blood work. She is a young, attractive, brunette with a perky, smiley face, who intends to make the patient happy. On my newest report all was good except protein is dropping (from 3.8 to 3.5) and she asked if I was eating a lot of protein. Told her about more steaks and fish and she suggested I eat even more protein. Also, phosphorus is still too high but is dropping again (from 7.2 to 6.8). I reported that I had kept my promise with Jennifer and had no enchiladas, beans, or cheese for the whole week. Of course that won’t show in the blood work until next Tuesday. Somehow we got into talking about chilies and how I refuse to stop eating them, and Laura said that’s okay cause they are only a problem for potassium, and my potassium looks great. It is so nice to have lower potassium. In sharing that she understood my love of chile, she said, “I’m from El Paso” and I replied, “ME TOO ”. “Well, really Fabens" she added quickly, to which I said, “Wow. I worked at Fabens Ice Co., delivering crystal clear ice to bars all over the lower valley!" OH NO! We have the 'when old El Pasoans meet' thing going on again (see Post #25); except that she and I talked more about crops in the upper versus lower valleys. Her dad grows pistachios on their land and I talked about living up in Anthony in the middle of cotton and onion fields. Turns out she went to high school with Herman, but does that mean anything else. Like, how in the world did they both end up here at El Milagro? I will have to pay attention.
Wednesday Afternoon: Feeling blah this afternoon. Maybe nauseous or maybe just worn out from losing almost 7 pounds in dialysis last night. The blahs came on shortly after reading an email from a friend who said, "... sorry to hear you're having medical issues." That sounds so sicky to me. I don't have 'medical issues', I have a broken kidney. I prefer to use the analogy of 'broken' because it suggests repair whereas 'issues' seems like something I should go to therapy about.
So I came home to rest. Two thoughts hit me today. 1) This dialysis stuff is getting old. I mean I realize it is an important part of living for me right now…. but I am getting tired of having this kidney condition make me concentrate so much on my diet, taking meds, keeping a schedule, and all else. Usually I am very UP about it and facing it like an adventure, but today that seemed like a depressing chore. I shudder to think I’m thinking its getting old after only three and a half months…. this could go on for years. Maybe the honeymoon is over. (Maybe I do have issues).
And, 2) I’m realizing I’m a bionic man. When organs have to be enhanced or replaced by mechanical means that is the definition of bionics*. So, when hooked up to a dialysis machine, I am a bionic person! That sounds cool, but it also means that I need electricity, or a Honda generator to do dialysis. Think what would happen if
Or, rather than a nuclear attack, think what would happen if we couldn’t do more stem cell research. That would be terrible for people waiting for scientists to invent a way to grow kidneys (and many other stem cell miracles). Oh yeah; as of today, we can't. Scientists and Patients need to UNITE and let Mr. Bush know how far back in history his beliefs are taking us (Funny how he is all for killing people in the electric chair but protecting them before their personhood exists). Many American science types who want to do research in these areas are now going to Europe and other countries to do their work. Even Republican, Orrin Hatch, said "The only veto he has been willing to exercise up to this particular point is a veto against the most promising research ever devised to man. I think that's a terrible mistake."** The senator said stem-cell research could lead to cures for diseases such as cancer and diabetes, as well as Parkinson's and Alzheimer's Diseases. Hatch continued that while he supports Bush's desire for more adoptions of frozen embryos, "7,000 to 20,000 of them are destroyed each year. How can you allow 7,000 to 20,000 of these spare embryos to be destroyed a year, yet consider it murder to use them for research to benefit mankind? Either way, they are being destroyed." Of course, this debate is a whole nuther story. Don’t get me started!
And that’s the way I see it.
Notes: In at 75.1 Kg, and out at 72.2 Kg.
*Bionics (n.d.) retrieved online from Reference.Com at http://www.reference.com/browse/wiki/Bionics Their source is Wikipedia, the free encyclopedia © 2001-2006 Wikipedia contributors (Disclaimer)
**Davidson, L. Bush's veto power nips US funds for stem-cell research. Retrieved online July 20th from Deseretnews.com at http://deseretnews.com/dn/view/0,1249,640196152,00.html
7/16/06
30) Saturday Dialysis in Dallas
July 15, 2006
Saturday
North Dallas Dialysis Center: Today Oscar, the Hispanic charge nurse, smoothly cannulated me. Oscar is originally from the valley (McAllen) and moved to Dallas 14 years ago after a divorce and a visit to his brother up here. I mentioned that I had a friend from the valley (Cruz) who hated Arlington when we went to graduate school, because the cultural shift was too radical; to which Oscar said "he should've lived in Garland, Mesquite, Oak Cliff, or west Dallas. He would've found lots of us around those places."
There was one brand new patient there today: a youngish Asian guy with a Hawaiin shirt and bright yellow running shorts. It was like I was observing myself four months ago. He looked a bit apprehensive and had lots of questions for the techs and Oscar. The reason I mention this is that at the end of the session, after they de-cannulated him, as he was 'holding' gauze pads over the needle holes, I could tell he was pushing the pads tightly into his arm. The techs let you sit there, 'holding' for about ten minutes before they return to tape you up. And clearly they didn't tell him the 'holding' tip: start by holding the gauze very tightly and then loosen up the pressure as the time goes by so that by the end you are lightly holding. So, after he was taped and ready to walk out, he yelled out, "I'm bleeding!" and had to sit back down and start the whole process over. When you hold tightly for the whole time, you don't allow the wound to begin to clot, so when you let up on the pressure, it starts bleeding again.
Speaking of bleeding, I was able to find and watch the whole of the movie Carrie (1976, Brian de Palma: based on Stephen King's first novel), which I hadn't seen in probably 30 years. I had forgotten that Amy Irving, John Travolta, and Piper Laurie were in it. Also, I recognized William Katt (Carrie's date) who played Paul Drake in the later Perry Mason TV movie series, along with his mother Barbara Hale (Della Street). So, all that made a re-watch of Carrie worthwhile.
At the beginning of the session, I read my Alex Delaware book for awhile, then watched the news.
As I left the center at the end of my session, staff said I could return anytime and we said our goodbyes and I shouted out my ending weight to the nurse. Thus ends my adventure in Dallas Dialysis.
Notes: In at 74.9 and out at 72.1 Kgs.
Saturday
North Dallas Dialysis Center: Today Oscar, the Hispanic charge nurse, smoothly cannulated me. Oscar is originally from the valley (McAllen) and moved to Dallas 14 years ago after a divorce and a visit to his brother up here. I mentioned that I had a friend from the valley (Cruz) who hated Arlington when we went to graduate school, because the cultural shift was too radical; to which Oscar said "he should've lived in Garland, Mesquite, Oak Cliff, or west Dallas. He would've found lots of us around those places."
There was one brand new patient there today: a youngish Asian guy with a Hawaiin shirt and bright yellow running shorts. It was like I was observing myself four months ago. He looked a bit apprehensive and had lots of questions for the techs and Oscar. The reason I mention this is that at the end of the session, after they de-cannulated him, as he was 'holding' gauze pads over the needle holes, I could tell he was pushing the pads tightly into his arm. The techs let you sit there, 'holding' for about ten minutes before they return to tape you up. And clearly they didn't tell him the 'holding' tip: start by holding the gauze very tightly and then loosen up the pressure as the time goes by so that by the end you are lightly holding. So, after he was taped and ready to walk out, he yelled out, "I'm bleeding!" and had to sit back down and start the whole process over. When you hold tightly for the whole time, you don't allow the wound to begin to clot, so when you let up on the pressure, it starts bleeding again.
Speaking of bleeding, I was able to find and watch the whole of the movie Carrie (1976, Brian de Palma: based on Stephen King's first novel), which I hadn't seen in probably 30 years. I had forgotten that Amy Irving, John Travolta, and Piper Laurie were in it. Also, I recognized William Katt (Carrie's date) who played Paul Drake in the later Perry Mason TV movie series, along with his mother Barbara Hale (Della Street). So, all that made a re-watch of Carrie worthwhile.
At the beginning of the session, I read my Alex Delaware book for awhile, then watched the news.
As I left the center at the end of my session, staff said I could return anytime and we said our goodbyes and I shouted out my ending weight to the nurse. Thus ends my adventure in Dallas Dialysis.
Notes: In at 74.9 and out at 72.1 Kgs.
7/14/06
29) Stranger in North Dallas Land
July 13, 2006
Thursday
North Dallas Dialysis Center: I am a visitor in a foreign dialysis center, if you can consider N. Dallas a foreign land (and that's another story). I arrive right on time at 4:00 pm. This place looks more like a medical clinic, with a well-furnished waiting room, a glassed-in receptionist, and a long hallway leading back to the "treatment room". A tech comes out and gives me 5 releases to sign and stands their impatiently while I try to read a little bit about what I'm signing.... basically that I'm on my own legally if anything were to happen in their building.
I get called to the back and led to a bed after I weigh in. A bed? I try to figure out how to approach a bed... do I sit on the edge, lie down, take off my shoes? What is the proper bed-patient behavior. I decide to make my self comfortable so I slip off my sandals and jump into the middle of the bed, causing it to bounce a few times. An Asian guy named Terry comes over to cannulate me. He asks me to stand for my first BP and I stand on the floor barefoot, saying at my center they say not to do this... and he replies that it is not proper here either, although he promises the floor is quite clean. He makes conversation (Where you from? Where you staying? OH! Rich people live there. How many chairs at your center? How long you coming here? ETC) while he smoothly cannulates me. A difference here is that he runs the tubing from my fistula on my left arm, accross my chest, to the machine on the right of the bed. So the whole time I am conscious of these warm tubes laying accross me pulsing gently.
This place is a lot smaller than my center in Austin. There are about 10 chairs and 5 or 6 beds. Terry explains that they operate 24/7 and have overnighters who receive long dialysis as they sleep here. He mentions that overnight dialysis is twice as slow and better for some patients.
Later, Erleen, a tall, large African American woman stops by to introduce herself and make small talk for awhile. None of the other staff, except an Asian nurse at the end, say anything, introduce themselves, or pay much attention to me. I do hear that there are two other 'visitors' in the place tonight. I settle down to reading my Alex novel and read until the news at 5:30. The TVs here swing around from behind you and settle right in front of your face, like Max in The Navigator. I had to lower the back part of my bed to get some distance from the TV. Sometime during the local news I drift off for a nap and wake up at 8 pm.
By 8:30 Erleen is de-cannulating me and my first out-of-town dialysis session is about to be over.
Notes: In at74.3 Kg. and out at 71.8 Kg.
Thursday
North Dallas Dialysis Center: I am a visitor in a foreign dialysis center, if you can consider N. Dallas a foreign land (and that's another story). I arrive right on time at 4:00 pm. This place looks more like a medical clinic, with a well-furnished waiting room, a glassed-in receptionist, and a long hallway leading back to the "treatment room". A tech comes out and gives me 5 releases to sign and stands their impatiently while I try to read a little bit about what I'm signing.... basically that I'm on my own legally if anything were to happen in their building.
I get called to the back and led to a bed after I weigh in. A bed? I try to figure out how to approach a bed... do I sit on the edge, lie down, take off my shoes? What is the proper bed-patient behavior. I decide to make my self comfortable so I slip off my sandals and jump into the middle of the bed, causing it to bounce a few times. An Asian guy named Terry comes over to cannulate me. He asks me to stand for my first BP and I stand on the floor barefoot, saying at my center they say not to do this... and he replies that it is not proper here either, although he promises the floor is quite clean. He makes conversation (Where you from? Where you staying? OH! Rich people live there. How many chairs at your center? How long you coming here? ETC) while he smoothly cannulates me. A difference here is that he runs the tubing from my fistula on my left arm, accross my chest, to the machine on the right of the bed. So the whole time I am conscious of these warm tubes laying accross me pulsing gently.
This place is a lot smaller than my center in Austin. There are about 10 chairs and 5 or 6 beds. Terry explains that they operate 24/7 and have overnighters who receive long dialysis as they sleep here. He mentions that overnight dialysis is twice as slow and better for some patients.
Later, Erleen, a tall, large African American woman stops by to introduce herself and make small talk for awhile. None of the other staff, except an Asian nurse at the end, say anything, introduce themselves, or pay much attention to me. I do hear that there are two other 'visitors' in the place tonight. I settle down to reading my Alex novel and read until the news at 5:30. The TVs here swing around from behind you and settle right in front of your face, like Max in The Navigator. I had to lower the back part of my bed to get some distance from the TV. Sometime during the local news I drift off for a nap and wake up at 8 pm.
By 8:30 Erleen is de-cannulating me and my first out-of-town dialysis session is about to be over.
Notes: In at74.3 Kg. and out at 71.8 Kg.
7/10/06
28) The Saturday Evening Post
July 8, 2006
Saturday
El Milagro: I get a chair at 1:00 pm. Jo comes over to set me up in the corner chair and asks if I¹ll watch the game tomorrow. She too is for Italia and we share our excitement about the upcoming match. Then Herman comes to cannulate me and as he is doing that Connie comes up and says, "I really enjoy your blog." In front of Debbie, Herman, and Jo, who all show some curiosity about it. Debbie wonders if I have a My Space place too? to which I respond, "Nah. I¹m way to old for that. Just a blog." Herman asks what its about, and I say, "Its about my experiences on dialysis.... here." And he says he¹ll check it out. I tell him he can get to it simply by typing 'quotes Jack¹s kidney adventure, end quotes¹ on Google and it should come up.
I¹m in the southeast corner today, where I can see the whole place and everything that goes on. The room is completely full today. Herman says that even though they are now completely full on all shifts, it is still a good idea for me to call on Saturdays cause you can never tell what¹ll come open.
Today I am reading the new Alex Delaware novel, Gone! Whenever a new Delaware novel comes out I put everything down and read it so fast that it is basically all I do until I¹m done. Then I have that depressed feeling you get when you¹ve finished a book that you wanted to keep reading: it¹s over too fast. I was immersed in it and it was my novel reality. That¹s the way it used to be. In the last few years though, I¹ve learned to pace myself on Alex. I no longer pick it up and read it 24-7 until I¹m done. And I think that Kellerman has changed his writing too, because I don¹t think the books are as grabbing as they used to be. Actually, some people say they are all the same now. Nowadays, I pick it up, read a few chapters, put it down and do something else for awhile before I pick it up again. Now I can drag reading a Delaware novel out to about a week. Every year my family¹s Delaware novel starts with me. Jennifer buys it for me (for Chanukah or birthday) and then it gets passed around to the others; Joan, Liz, Jen, Carol, and sometimes Kim.
Saturday
El Milagro: I get a chair at 1:00 pm. Jo comes over to set me up in the corner chair and asks if I¹ll watch the game tomorrow. She too is for Italia and we share our excitement about the upcoming match. Then Herman comes to cannulate me and as he is doing that Connie comes up and says, "I really enjoy your blog." In front of Debbie, Herman, and Jo, who all show some curiosity about it. Debbie wonders if I have a My Space place too? to which I respond, "Nah. I¹m way to old for that. Just a blog." Herman asks what its about, and I say, "Its about my experiences on dialysis.... here." And he says he¹ll check it out. I tell him he can get to it simply by typing 'quotes Jack¹s kidney adventure, end quotes¹ on Google and it should come up.
I¹m in the southeast corner today, where I can see the whole place and everything that goes on. The room is completely full today. Herman says that even though they are now completely full on all shifts, it is still a good idea for me to call on Saturdays cause you can never tell what¹ll come open.
Today I am reading the new Alex Delaware novel, Gone! Whenever a new Delaware novel comes out I put everything down and read it so fast that it is basically all I do until I¹m done. Then I have that depressed feeling you get when you¹ve finished a book that you wanted to keep reading: it¹s over too fast. I was immersed in it and it was my novel reality. That¹s the way it used to be. In the last few years though, I¹ve learned to pace myself on Alex. I no longer pick it up and read it 24-7 until I¹m done. And I think that Kellerman has changed his writing too, because I don¹t think the books are as grabbing as they used to be. Actually, some people say they are all the same now. Nowadays, I pick it up, read a few chapters, put it down and do something else for awhile before I pick it up again. Now I can drag reading a Delaware novel out to about a week. Every year my family¹s Delaware novel starts with me. Jennifer buys it for me (for Chanukah or birthday) and then it gets passed around to the others; Joan, Liz, Jen, Carol, and sometimes Kim.
I get de-cannulated at about 5:30 and although its a little early to be considered "evening" I have been waiting for the opportunity to use the above title, so I consider this to be the Saturday Evening Post. And away we go.
Notes: Thanks to Hans for his comments on my Ethics Post. He has a way of saying things in a thoughtfully provoking and complicating way that makes me carefully think through each of his assertions, and he is always one of the translators of constructivist thought.
7/7/06
27) The Phosphorus Itch
July 6, 2006
Thursday
Afternoon: Got an email from Marilyn the social worker, saying all was set for my visit to the dialysis center in Dallas next week. Then, an hour or so later, Marilyn called to say that things aren¹t certain for next week: "they lost the fax I sent, and have a new social worker, and are being a little hesitant about this whole thing. So, it¹s not for sure yet." She promised to work on it though. I am thinking, these guys are not as organized as they seem to be... and ask, "Is there anything I can do?". I need to get a TB test and give Marilyn my address and phone number in Dallas.
El Milagro: Gladys cannulated me again. Herman stops by to ask me about two restaurants in El Paso that I don¹t know about. Jennifer the dietician stops with a report on my blood work: my phosphorus is higher again so we talk about what all I¹ve been eating and she draws a promise out of me to not eat any enchiladas for the next week to see it that¹s the culprit. The phosphorus is so high right now that they might have to add another binder. Also, it is probably the reason I¹ve been so itchy lately: every night Liz has to scratch my back until there are red marks and I finally sigh in relief. Liz reads to me later, "High phosphorus causes bone disease, itching and deposits in your heart, eyes, joints, blood vessels, and skin." Yuck! Herman comes back later and gives me a TB test that we¹ll read on Saturday.
Notes: In at 74.3 Kg, and out at 72.8 Kg.
2) For more on Phosphorus, see Post #6: Phosphorus News.
3) There is a new comment from Cecilia on Post # 7: It Started with Synthroid
Thursday
Afternoon: Got an email from Marilyn the social worker, saying all was set for my visit to the dialysis center in Dallas next week. Then, an hour or so later, Marilyn called to say that things aren¹t certain for next week: "they lost the fax I sent, and have a new social worker, and are being a little hesitant about this whole thing. So, it¹s not for sure yet." She promised to work on it though. I am thinking, these guys are not as organized as they seem to be... and ask, "Is there anything I can do?". I need to get a TB test and give Marilyn my address and phone number in Dallas.
El Milagro: Gladys cannulated me again. Herman stops by to ask me about two restaurants in El Paso that I don¹t know about. Jennifer the dietician stops with a report on my blood work: my phosphorus is higher again so we talk about what all I¹ve been eating and she draws a promise out of me to not eat any enchiladas for the next week to see it that¹s the culprit. The phosphorus is so high right now that they might have to add another binder. Also, it is probably the reason I¹ve been so itchy lately: every night Liz has to scratch my back until there are red marks and I finally sigh in relief. Liz reads to me later, "High phosphorus causes bone disease, itching and deposits in your heart, eyes, joints, blood vessels, and skin." Yuck! Herman comes back later and gives me a TB test that we¹ll read on Saturday.
Notes: In at 74.3 Kg, and out at 72.8 Kg.
2) For more on Phosphorus, see Post #6: Phosphorus News.
3) There is a new comment from Cecilia on Post # 7: It Started with Synthroid
7/5/06
26) Ethical Insights
July 4, 2006
Tuesday
Last Sunday: I was talking to a fellow social worker about the move to set legal procedures for kidney trades. He mentioned that, as a social worker involved with preparing people for transplants, he is for that change because, when it is made, it will actually offer more opportunities for everyone waiting for kidneys. Right now there are many people who are
waiting for a cadaver kidney who could find a trade. After the trade policy is written into law, it will increase the amount of trades, which will have a ripple effect on the number of people who can get cadaver transplants because it will clear out many people on the waiting lists.
This is a good segue into my thoughts on the ethics of live transplant. There are ethical arguments and conversations going on about virtually every area related to transplants, including: ’live transplants’, ‘cadaver transplants’, ‘advertising for organs’, ‘control over transplants’, ‘free choice and organ donation’, ‘paying for organs’, ‘religious questions’, and ‘living donors’. Writers addressing transplant ethics tell stories to illustrate their perspectives, such as a story told by Arthur Caplan* in Science & Theology News Online.
(Todd Krampitz) “…got a directed donation last year from a cadaver source. … He was the fellow who put up billboards around the Houston, Texas, area asking people to donate specifically to him if they died or if they had a loved one who died. Todd Krampitz was a young man, he was only 33 years old, when he found out his liver was failing due to cancer. He mounted a campaign with his funds and money that he raised, and put billboards up to beg for a donor. And he did get a transplant in late August of last year. He just died only nine months after his transplant.
"The problem with his case was that, from the point of view of the transplant community, he was not a strong candidate to get an organ. They didn’t think he would survive a transplant given the nature of his cancer, which was aggressive and very likely to take his life. It is unclear, in fact, that he lived any longer post his transplant than he would have if he had not gotten a directed cadaver donation and a transplant.”
Caplan’s point, and argument is that the “transplant community” should be able to direct who gets transplants and who doesn’t get transplants. Someone needs to determine who is most appropriate for a transplant and all the details surrounding the transplant (when, cost/benefit, and resource allocation). Caplan argues that these questions should not be made by individuals (people advertising for an organ and those donating an organ to an individual) because we citizens are all paying the bill since we pay taxes that support training doctors, contributing to Medicare and Medicaid. In his mind, “Directed donation unbridled and unregulated, either living or cadaver, can, as the Krampitz case shows, undercut the efficacy that ought to be obtained from the yield of scarce organs.” This is a valid argument from the utilitarian point of view: ‘the greatest good for the greatest number’.
However, when a person is in the situation of needing an organ and they have resources in a “free” society, they will usually use their resources (do what they can) to get what they want. This needing-an-organ-situation is a serious thing to those of us who need one! Depending on how critical and immediate the need is for a life-saving organ transplant, I suspect people with resources intensify and accelerate their efforts at getting what they need to continue living. Are there any among us who like the idea of sitting idly by while our life peters out waiting f
or an organization (or a bureaucracy) to find an organ for us?
We all know that a rich person needing an organ will get one because they have the financial resources to purchase an organ in South America or Southeast Asia or in any third world country. One view is that the third world exists to supply the dominant societies. (I’m looking for a comment from Hans here!) And even in the dominant society, the wealthy don’t usually play by the rules of the common folk, so even though we may eventually legislate ‘appropriate’ methods for organ transplant, there is a segment of our society who will not have to play by those rules.
So, I wonder, what is the difference between someone who uses financial resources to purchase an organ, and someone who uses their creative resources to publicize and promote their organ needs? Mr. Krampitz utilized some financial resources and a lot of creative resources to successfully ‘sell’ the idea of giving him an organ. Would it have been more appropriate if he had convinced the public that giving him an organ would benefit the whole of Houston? Perhaps it is more ethical for prospective organ recipients to have to show how many good deeds they will do with their new organ?
I venture that, along with some organization deciding who is worthy of an organ, based on the cost/benefit, immediate individual need, and responsible resource allocation, perhaps there should also be an evaluation of the recipient’s potential constructive benefit to society. Then the determining questions might include, “Will the person use their new organ responsibly?”; “Is a social worker worth more to society than a salesperson?”; “Will the recipient vote to support the ruling party?”; and “Does the recipient have the correct moral fiber?” Don’t we want to find out if organ recipients will be good-deed-doers? I would be more in favor of giving an organ to a good-deed-doer than a professional athlete. But, do I represent the values of the organization that will be responsible for determining who gets what organ and when?
These are all mighty questions. I carry them to what some people might consider to be the absurd conclusion to point out that ethical discourse can be simply an exercise in looking to extremes in many cases. All the real ethical questions and considerations have been elucidated and argued for generations. Now, we are left with telling stories and using them to support our own beliefs. In a post-modern world all stories are valid and we are left to our own devices in figuring out which stories (narratives) we want to stand for. And, of course, any discourse is incomparable when discussed from an academic versus a personal perspective.
I guess I believe that ethics comes down to a personal set of values that each person must tap in any given situation (Fletcher’s Situation Ethics), and that it is very difficult to legislate values without allowing the SPGs, PACs, lobbying groups, and advocacy groups to control the process. Therfore, we, as potential recipients of organs, need to review our options and hopefully find a special interest group that we can agree with, and then join that group to ensure that it reflects our beliefs and values. In the area of transplants, I like the UNOS group because they are interested in one legislative agenda that I agree with: making it possible for people on the list for transplants to trade their live donors who don’t match with others who do match.
We also need to do what we can to educate our friends and neighbors about our particular world (in my case, Kidney Dialysis &Transplant City) and hope there is someone out there who wants to partner with us in our transplant adventure. That’s the way I see it.
* Caplan, A. (2005) The ethics of living organ donation. Retrieved June 19, 2006 online from the Science & Theology News (Online Edition), available at: http://www.stnews.org/rlr-1279.htm
El Milagro: Gladys cannulated me and did a fair job. Phyllis reported that she and Diane got suspended for a day for the mistake with my dialyzer and added, "as well we should have.". I was curious about why today (a holiday) wasn¹t like a Saturday, when I can slip in early, and she replied that the early business is basically over, since, as of this week, every chair in
every shift is full. There are five new people coming onto my shift this Thursday, transferred from another center that is being redecorated (or, renewed or something).
Today I am watching the amazing match between Germany and Italy... where it goes into the second 15 minute overtime period and looks like it¹ll end up with free kicks, which Germany always wins and Italy usually looses. Then, all of sudden Italy scores! And then, a minute and a half later, they score again... and it¹s over: Italy beat Germany (the favorite)!. WOW
Notes: In at 73.6 Kg, and out at 72.0 Kg.
Tuesday
Last Sunday: I was talking to a fellow social worker about the move to set legal procedures for kidney trades. He mentioned that, as a social worker involved with preparing people for transplants, he is for that change because, when it is made, it will actually offer more opportunities for everyone waiting for kidneys. Right now there are many people who are
waiting for a cadaver kidney who could find a trade. After the trade policy is written into law, it will increase the amount of trades, which will have a ripple effect on the number of people who can get cadaver transplants because it will clear out many people on the waiting lists.
This is a good segue into my thoughts on the ethics of live transplant. There are ethical arguments and conversations going on about virtually every area related to transplants, including: ’live transplants’, ‘cadaver transplants’, ‘advertising for organs’, ‘control over transplants’, ‘free choice and organ donation’, ‘paying for organs’, ‘religious questions’, and ‘living donors’. Writers addressing transplant ethics tell stories to illustrate their perspectives, such as a story told by Arthur Caplan* in Science & Theology News Online.
(Todd Krampitz) “…got a directed donation last year from a cadaver source. … He was the fellow who put up billboards around the Houston, Texas, area asking people to donate specifically to him if they died or if they had a loved one who died. Todd Krampitz was a young man, he was only 33 years old, when he found out his liver was failing due to cancer. He mounted a campaign with his funds and money that he raised, and put billboards up to beg for a donor. And he did get a transplant in late August of last year. He just died only nine months after his transplant.
"The problem with his case was that, from the point of view of the transplant community, he was not a strong candidate to get an organ. They didn’t think he would survive a transplant given the nature of his cancer, which was aggressive and very likely to take his life. It is unclear, in fact, that he lived any longer post his transplant than he would have if he had not gotten a directed cadaver donation and a transplant.”
Caplan’s point, and argument is that the “transplant community” should be able to direct who gets transplants and who doesn’t get transplants. Someone needs to determine who is most appropriate for a transplant and all the details surrounding the transplant (when, cost/benefit, and resource allocation). Caplan argues that these questions should not be made by individuals (people advertising for an organ and those donating an organ to an individual) because we citizens are all paying the bill since we pay taxes that support training doctors, contributing to Medicare and Medicaid. In his mind, “Directed donation unbridled and unregulated, either living or cadaver, can, as the Krampitz case shows, undercut the efficacy that ought to be obtained from the yield of scarce organs.” This is a valid argument from the utilitarian point of view: ‘the greatest good for the greatest number’.
However, when a person is in the situation of needing an organ and they have resources in a “free” society, they will usually use their resources (do what they can) to get what they want. This needing-an-organ-situation is a serious thing to those of us who need one! Depending on how critical and immediate the need is for a life-saving organ transplant, I suspect people with resources intensify and accelerate their efforts at getting what they need to continue living. Are there any among us who like the idea of sitting idly by while our life peters out waiting f
or an organization (or a bureaucracy) to find an organ for us?We all know that a rich person needing an organ will get one because they have the financial resources to purchase an organ in South America or Southeast Asia or in any third world country. One view is that the third world exists to supply the dominant societies. (I’m looking for a comment from Hans here!) And even in the dominant society, the wealthy don’t usually play by the rules of the common folk, so even though we may eventually legislate ‘appropriate’ methods for organ transplant, there is a segment of our society who will not have to play by those rules.
So, I wonder, what is the difference between someone who uses financial resources to purchase an organ, and someone who uses their creative resources to publicize and promote their organ needs? Mr. Krampitz utilized some financial resources and a lot of creative resources to successfully ‘sell’ the idea of giving him an organ. Would it have been more appropriate if he had convinced the public that giving him an organ would benefit the whole of Houston? Perhaps it is more ethical for prospective organ recipients to have to show how many good deeds they will do with their new organ?
I venture that, along with some organization deciding who is worthy of an organ, based on the cost/benefit, immediate individual need, and responsible resource allocation, perhaps there should also be an evaluation of the recipient’s potential constructive benefit to society. Then the determining questions might include, “Will the person use their new organ responsibly?”; “Is a social worker worth more to society than a salesperson?”; “Will the recipient vote to support the ruling party?”; and “Does the recipient have the correct moral fiber?” Don’t we want to find out if organ recipients will be good-deed-doers? I would be more in favor of giving an organ to a good-deed-doer than a professional athlete. But, do I represent the values of the organization that will be responsible for determining who gets what organ and when?
These are all mighty questions. I carry them to what some people might consider to be the absurd conclusion to point out that ethical discourse can be simply an exercise in looking to extremes in many cases. All the real ethical questions and considerations have been elucidated and argued for generations. Now, we are left with telling stories and using them to support our own beliefs. In a post-modern world all stories are valid and we are left to our own devices in figuring out which stories (narratives) we want to stand for. And, of course, any discourse is incomparable when discussed from an academic versus a personal perspective.
I guess I believe that ethics comes down to a personal set of values that each person must tap in any given situation (Fletcher’s Situation Ethics), and that it is very difficult to legislate values without allowing the SPGs, PACs, lobbying groups, and advocacy groups to control the process. Therfore, we, as potential recipients of organs, need to review our options and hopefully find a special interest group that we can agree with, and then join that group to ensure that it reflects our beliefs and values. In the area of transplants, I like the UNOS group because they are interested in one legislative agenda that I agree with: making it possible for people on the list for transplants to trade their live donors who don’t match with others who do match.
We also need to do what we can to educate our friends and neighbors about our particular world (in my case, Kidney Dialysis &Transplant City) and hope there is someone out there who wants to partner with us in our transplant adventure. That’s the way I see it.
* Caplan, A. (2005) The ethics of living organ donation. Retrieved June 19, 2006 online from the Science & Theology News (Online Edition), available at: http://www.stnews.org/rlr-1279.htm
El Milagro: Gladys cannulated me and did a fair job. Phyllis reported that she and Diane got suspended for a day for the mistake with my dialyzer and added, "as well we should have.". I was curious about why today (a holiday) wasn¹t like a Saturday, when I can slip in early, and she replied that the early business is basically over, since, as of this week, every chair in
every shift is full. There are five new people coming onto my shift this Thursday, transferred from another center that is being redecorated (or, renewed or something).
Today I am watching the amazing match between Germany and Italy... where it goes into the second 15 minute overtime period and looks like it¹ll end up with free kicks, which Germany always wins and Italy usually looses. Then, all of sudden Italy scores! And then, a minute and a half later, they score again... and it¹s over: Italy beat Germany (the favorite)!. WOW
Notes: In at 73.6 Kg, and out at 72.0 Kg.
25) When Old El Pasoans Meet
July 1, 2006
Saturday
El Milagro: Noon. Herman is cannulating me and somehow it comes up that he is from El Paso too. So, we have to do the 'when old El Pasoans meet ceremony¹: there¹s no El Paso-style Mexican food in Austin; lots of El Pasoans move to Austin; and where did you go to high school? He is actually from Clint, in the lower valley below El Paso. Clint began as a rail stop for San Elizario, which was the county seat in the 1880¹s. Today it continues as a rural farming community producing cotton, corn and green chile.
I told Herman I went to Burgess and worked at Faben¹s Ice Company delivering ice all through the lower valley back in the early 1970¹s. Then we are off to comparing Mexican restaurants in El Paso.
Before I know it he¹s got me cannulated and we agree to continue our El Paso conversation. I watch soccer and see England loose to Portugal and then France beat Brazil, both upsets! Dialysis is very easy today and the time fairly zooms by.
Notes: In at 71.6 Kg, and out at 69.9 Kg.
Saturday
El Milagro: Noon. Herman is cannulating me and somehow it comes up that he is from El Paso too. So, we have to do the 'when old El Pasoans meet ceremony¹: there¹s no El Paso-style Mexican food in Austin; lots of El Pasoans move to Austin; and where did you go to high school? He is actually from Clint, in the lower valley below El Paso. Clint began as a rail stop for San Elizario, which was the county seat in the 1880¹s. Today it continues as a rural farming community producing cotton, corn and green chile.
I told Herman I went to Burgess and worked at Faben¹s Ice Company delivering ice all through the lower valley back in the early 1970¹s. Then we are off to comparing Mexican restaurants in El Paso.
Before I know it he¹s got me cannulated and we agree to continue our El Paso conversation. I watch soccer and see England loose to Portugal and then France beat Brazil, both upsets! Dialysis is very easy today and the time fairly zooms by.
Notes: In at 71.6 Kg, and out at 69.9 Kg.
6/30/06
24) Of Jaguarundi & Heparin
June 29, 2006
Thursday
Morning: I’m in Laredo, waking up in my room at the La Quinta, and wondering if any of the import places on San Bernardo are gonna be open before I leave for Austin. I check out and turn south on San Bernardo and within a few blocks I find a place that has tons of wrought iron stuff, but not exactly what I want. They have what I don’t want for $13, so I know that if they had what I want, it would be the right price. The shops on San Bernardo continue to be a good deal for us who don’t want the hassle of crossing the border. So, I pull out, heading north, and pass about four more shops that aren’t open this early. Soon I’m up to highway speed north of town, cruising through the low scrub brush of South Texas. I put a Bob Wills CD* on and pretend I’m driving a ’55 Olds 88, gliding along with that boaty feeling through the morning heat at 80 miles an hour. The road is mostly straight and its already shimmering out where it meets the horizon. As I cruise along listening to Johnny Gimble’s mand
olin plinks on one of the songs, I think about jaguarundi and ocelots. Both were once native to south Texas, although sightings of jaguarondi are few and far between.** For years, while driving through South Texas, I’ve kept watch in the low brush and cactus along the roadways, hoping to catch sight of one of these cats. Now, I remind myself of Peter Matthiessen’s trip to the Himalayas to search for the elusive snow leopard, and then writing about it in a 300 page book that beautifully describes not finding that snow leopard. Maybe the jaguarondi is my snow leopard. And maybe they’re just too difficult to spot when I’m zippin down the road at 80 mph.
I’m writing in a particularly writerly fashion today, probably for Alex. Alex, an almost too serious teen, is my Laredo friend Luis’ son. He met us for dinner last night, along with his dad and his girlfriend (fiancé? I can’t tell which). At some point Luis mentioned that Alex wants to “be a writer” so we talked a bit about writing. I shared the only bit of wisdom I can remember from my creative writing teacher, John Manchip White: “If you want to be a writer, you must write!”. And maybe this wasn’t ever said by White; it may just be my own quote from my visual memory of Mr. White standing properly and somewhat stodgily in front of the class (in 1969?). Sounds like something he’d say, so in my mind it is something he said.
Now as I swing down that last hill into San Antonio, Bob is singing “San Antonio Rose” and I’m not surprised. It’s time to switch over to public radio, and I remember that famous Cindy Walker line as I switch; “When you leave Amarillo; …turn out the lights.”
El Milagro: Herman is cannulating me regularly now; and I like that. He is funny, smart, and very gentle in his sticking behavior. Today, again, staff read out my name on my dialyzer before I even sat down. Today it was Phyllis who read my name to me. I mentioned to Phyllis that I was in Laredo last night, and she said, “that’s why you added so much weight.”, but it was just 2.4 Kg. (5 lbs.). I replied that I had a big steak and lots of water all day while I was presenting to two different groups. Today as I sat there writing on this post, I watched staff as they went about their work with the people being dialysized. They really are very conscientious about their work (I know I’ve said this before) and it is reassuring to notice that they are attentive and careful. They must use hundreds of pairs of latex gloves a day. Even if they leave a patient, pull off their gloves, and then return to the same patient, they put on a new pair. Today, Herman dropped my injection of heparin (a blood thinner because blood tends to clot in the plastic tubing) as he was getting ready to attach it to the tubing. The syringe even had the protective plastic cover over the needle, yet he kicked it away and got a new one. I said, “You could’ve used that one you dropped” and he replied, “Nope. We drop it and it’s history. Don’t want to take any chances.”.
The session was relaxing this afternoon, and I even snoozed a bit. My son, John, picked me up afterwards and we went home to a great fajita dinner with the family. All is well.
Notes: In at 73.1 and out at 70.1
* For the Last Time (1974) Bob Wills & His Texas Playboys, United Artists previewed on AMG online at http://www.allmusic.com/cg/amg.dll?p=amg&sql=10:9898b5m4tsqg
** Davis, W.B. (2000) Cats of Texas. A Texas Parks and Wildlife Publication, available online at www.tpwd.state.tx.us/publications/pwdpubs/media/pwd_lf_w7000_0150.pdf
Thursday
Morning: I’m in Laredo, waking up in my room at the La Quinta, and wondering if any of the import places on San Bernardo are gonna be open before I leave for Austin. I check out and turn south on San Bernardo and within a few blocks I find a place that has tons of wrought iron stuff, but not exactly what I want. They have what I don’t want for $13, so I know that if they had what I want, it would be the right price. The shops on San Bernardo continue to be a good deal for us who don’t want the hassle of crossing the border. So, I pull out, heading north, and pass about four more shops that aren’t open this early. Soon I’m up to highway speed north of town, cruising through the low scrub brush of South Texas. I put a Bob Wills CD* on and pretend I’m driving a ’55 Olds 88, gliding along with that boaty feeling through the morning heat at 80 miles an hour. The road is mostly straight and its already shimmering out where it meets the horizon. As I cruise along listening to Johnny Gimble’s mand
olin plinks on one of the songs, I think about jaguarundi and ocelots. Both were once native to south Texas, although sightings of jaguarondi are few and far between.** For years, while driving through South Texas, I’ve kept watch in the low brush and cactus along the roadways, hoping to catch sight of one of these cats. Now, I remind myself of Peter Matthiessen’s trip to the Himalayas to search for the elusive snow leopard, and then writing about it in a 300 page book that beautifully describes not finding that snow leopard. Maybe the jaguarondi is my snow leopard. And maybe they’re just too difficult to spot when I’m zippin down the road at 80 mph.I’m writing in a particularly writerly fashion today, probably for Alex. Alex, an almost too serious teen, is my Laredo friend Luis’ son. He met us for dinner last night, along with his dad and his girlfriend (fiancé? I can’t tell which). At some point Luis mentioned that Alex wants to “be a writer” so we talked a bit about writing. I shared the only bit of wisdom I can remember from my creative writing teacher, John Manchip White: “If you want to be a writer, you must write!”. And maybe this wasn’t ever said by White; it may just be my own quote from my visual memory of Mr. White standing properly and somewhat stodgily in front of the class (in 1969?). Sounds like something he’d say, so in my mind it is something he said.
Now as I swing down that last hill into San Antonio, Bob is singing “San Antonio Rose” and I’m not surprised. It’s time to switch over to public radio, and I remember that famous Cindy Walker line as I switch; “When you leave Amarillo; …turn out the lights.”
El Milagro: Herman is cannulating me regularly now; and I like that. He is funny, smart, and very gentle in his sticking behavior. Today, again, staff read out my name on my dialyzer before I even sat down. Today it was Phyllis who read my name to me. I mentioned to Phyllis that I was in Laredo last night, and she said, “that’s why you added so much weight.”, but it was just 2.4 Kg. (5 lbs.). I replied that I had a big steak and lots of water all day while I was presenting to two different groups. Today as I sat there writing on this post, I watched staff as they went about their work with the people being dialysized. They really are very conscientious about their work (I know I’ve said this before) and it is reassuring to notice that they are attentive and careful. They must use hundreds of pairs of latex gloves a day. Even if they leave a patient, pull off their gloves, and then return to the same patient, they put on a new pair. Today, Herman dropped my injection of heparin (a blood thinner because blood tends to clot in the plastic tubing) as he was getting ready to attach it to the tubing. The syringe even had the protective plastic cover over the needle, yet he kicked it away and got a new one. I said, “You could’ve used that one you dropped” and he replied, “Nope. We drop it and it’s history. Don’t want to take any chances.”.
The session was relaxing this afternoon, and I even snoozed a bit. My son, John, picked me up afterwards and we went home to a great fajita dinner with the family. All is well.
Notes: In at 73.1 and out at 70.1
* For the Last Time (1974) Bob Wills & His Texas Playboys, United Artists previewed on AMG online at http://www.allmusic.com/cg/amg.dll?p=amg&sql=10:9898b5m4tsqg
** Davis, W.B. (2000) Cats of Texas. A Texas Parks and Wildlife Publication, available online at www.tpwd.state.tx.us/publications/pwdpubs/media/pwd_lf_w7000_0150.pdf
6/26/06
23) Thursday & Saturday
June 22, 2006
Thursday
El Milagro: Before anyone did anything, Diane and Wilma read my dialyzer and ensured it had my name on it. Ron looked at my chart and my check in weight and reported to me that I was checking in at my “dry” weight, 71.5… so how much did I want them to take off. I replied, “What is your suggestion?”. Ron thought that maybe 1 Kg would be good for today. Diane began to cannulate me today and then called Ron over to fix what she had started because she had trouble tapping the arterial vein. Ron wiggled the needle around and then called Rosie over, who started over and easily hit it painlessly. Rosie maintains that she does so well because she has been doing it for many many years and experience is the key. I told Rosie I wished she always worked afternoons.
Notes: In at 71.5 Kg, and out at 70.5 Kg.
<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
June 24, 2006
Saturday
El Milagro: I was able to get in at 11:30 am today... a good time for being able to watch the entire match between Mexico and Argentina in the World Cup. Jo and Herman separately read off my dialyzer to ensure that it was labled with my name. Herman cannulated me today and did a smooth, painless job of it. Argentina beat Mexico 2 to 1 in overtime and the center was clearly disappointed.
Notes: In at 73.5 Kg, and out at 70.7 Kg.
Thursday
El Milagro: Before anyone did anything, Diane and Wilma read my dialyzer and ensured it had my name on it. Ron looked at my chart and my check in weight and reported to me that I was checking in at my “dry” weight, 71.5… so how much did I want them to take off. I replied, “What is your suggestion?”. Ron thought that maybe 1 Kg would be good for today. Diane began to cannulate me today and then called Ron over to fix what she had started because she had trouble tapping the arterial vein. Ron wiggled the needle around and then called Rosie over, who started over and easily hit it painlessly. Rosie maintains that she does so well because she has been doing it for many many years and experience is the key. I told Rosie I wished she always worked afternoons.
Notes: In at 71.5 Kg, and out at 70.5 Kg.
<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
June 24, 2006
Saturday
El Milagro: I was able to get in at 11:30 am today... a good time for being able to watch the entire match between Mexico and Argentina in the World Cup. Jo and Herman separately read off my dialyzer to ensure that it was labled with my name. Herman cannulated me today and did a smooth, painless job of it. Argentina beat Mexico 2 to 1 in overtime and the center was clearly disappointed.
Notes: In at 73.5 Kg, and out at 70.7 Kg.
6/21/06
22) Postively Negative
June 20, 2006
Tuesday
El Milagro: As I walked in to the center today, Marilyn the Social Worker stopped me to report that she has set up my visitor sessions in north Dallas for next month. I said thanks and somewhere in our little conversation asked how much my insurance is paying for these sessions. She replied that she didn¹t know; that insurance companies all have contracts with DaVita and pay different amounts. If I were to pay for it myself, it would cost $480 per session.
As I sat in my chair, Wilma and Eloy came up and one read and spelled my name off my dialyzer and the other verified they heard it before they even checked my blood pressure or listened to my chest. James cannulated my today, and had some difficulty getting a good draw in the arterial vein (the one that goes to the machine). He wiggled it around some and later, Herman came over and messed with it a little. Herman explained that sometimes the needle causes a kind of suction that collapses the vein and slows down the flow. In those cases you wiggle the needle around until it is in the center of the vein, where that collapsing is less likely to happen. While he was sitting there messing with the needle, he reported to me that the blood work from the other day (see Post # 20), when they got me in the wrong chair, was negative. I joked, "No, that¹s positive" and he replied, "I¹m positive it was negative."
Later, Jennifer the Dietician stopped by to give me my latest lab report and to visit. She started by letting me know she had read this blog and found it "interesting". We went over my lab report and basically, all the results are better than last time, although my phosphorous is still too high. She suggested that it is okay to take my binders either before or after meals and that I take my vitamins at bedtime rather than in the morning (since dialysis can flush them). She reminded me that I need to remember to take my sensipar after meals, because that will help my parathyroid balance calcium and phosphorous (see http://www.sensipar.com/consumer/whatIsSHPT.jsp for more information).
Detailed Nutrition Report:
& My albumin (protein) was good; although I need to keep concentrating on getting more protein
& My HCT CALC(HGBX3) is really good (that¹s my red blood cell count btw);
& My IRON SATURATION is good;
& My FERRITIN is good (stored iron);
& My CALCIUM CORRECTED is good;
& My PHOSPHORUS is still high although it is getting better with each report
& My CAxPHOS CORRECTED is also too high. Calcium + Phosphorus = Product. Again: take the binders.
Jennifer and I also discussed briefly the ethical questions surrounding living donors and somehow got into a discussion about the recent violence in New Orleans and the loss of her grandmother¹s house in Katrina.
About 20 minutes before the end of the session, I began having cramps in my legs. Wilma came over and turned the machine off and shot in some fluid (which gets rid of the cramping). So, I actually got done a little early this evening.
Notes: In at 73.5 Kg, and out at 70.7 Kg.
6/18/06
21) We Are All On Stage
June 17, 2006
Saturday
Morning: It seems like kidney donation is "in the news" lately. There¹s the article in Texas Monthly, TV stories on Alonzo Mourning¹s transplant* and playng in the NBA finals, and an article in the current AARP Bulletin** (Winning the Waiting Game) . Maybe I just notic
e all these things because I¹m in the market for a healthy pink kidney, or maybe its just like having a maroon Toyota T-100 and noticing all the other T-100s on the roads. 'In the News¹ these days is a move (by UNOS***) to increase kidney donation by developing a registry for people who want to donate to a person but aren¹t a match. People on the registry could swap one of their donors for a donor who does match. However, this registry will take action by Congress to be approved. As quoted from Bustler and Hudnall¹s article in the AARP Bulletin, "[In the United States,] we could do as many as 2,000 more kidney transplants a year by swapping donors," says Robert Montgomery, M.D., chief of transplantation at the Johns Hopkins Hospital in Baltimore and the lead author of a recent study that reported on the method's success." UNOS was created under a law that will have to be amended to clarify a swap program ("exchanges between paired donors and patients do not involve money and thus would encourage other transplant centers to create their own paired donation programs.") The bipartisan bill to amend the law is "languishing in a Senate committee, and no one has come forward to sponsor such a bill in the House." And UNOS can¹t begin the registry without such a change to the law.
Although the swap amendment is not yet a reality, many people in search of a kidney turn to their network of friends and the internet to find prospective donors (my Blog is an example). Some officials and experts consider open kidney searching as an unethical approach, suggesting that people who are advertising their need for a kidney are "cheating". I plan to write a summary and opinion on the ethical questions surrounding 'advertising¹ for a kidney in an upcoming post, so keep tuned in for that.
El Milagro: Eloy cannulated me today, doing a smooth poke. As he is working on me, the new guy shows up, seemingly late for work. He is explaining to Herman (the Nursing Administrator) and Herman is showing no emotions nor nodding is head in agreement. He is stone-faced. I mention to Eloy something like, "This new guy seems to be a bit of a problem" to which Eloy chuckles and replies, "You are observant, aren¹t you?". After I settle in, I¹m watching Ghana beat the Czek Republic in a rousing upset. Having the World Cup on TV is a definite benefit of being on dialysis right now, since the games are all over the TV and most of the people at the center are interested in them. Its like being in a strange sports bar.
I have noticed them before: the computer-printed signs on 8 1/2 x 11 paper that say "On Stage". Today I ask Eloy about them, and Herman is within earshot and adds some to Eloy¹s answer. These signs are reminders to the staff that they are being watched, Eloy reports. They are "on stage" and the patients are the audience. The administrators are the watchers. Herman adds that the idea is that everyone is here to 'perform¹ for the patients and that the patients are watching too. We are all watching later as the USA and Italy play to a tie, even though the refereeing was horrible (we watched). USA was lucky because Italy contributed to the tie by scoring the USA¹s only score. Just as the game is over I am done with today¹s session.
Notes: In at 72.5 Kg, and out at 70.5 Kg.
*Barbara Basler and Chad Hudnall, (2006) Winning the waiting game. available online at the AARP Website:
http://www.aarp.org/bulletin/yourhealth/waiting_game.html
** Conrad, C.R. (2006) Say it ain¹t so, Zo. Available online at the Star IQ Website: http://www.stariq.com/Main/Articles/P0001675.HTM
*** United Network for Organ Sharing, on the web at www.unos.org
Saturday
Morning: It seems like kidney donation is "in the news" lately. There¹s the article in Texas Monthly, TV stories on Alonzo Mourning¹s transplant* and playng in the NBA finals, and an article in the current AARP Bulletin** (Winning the Waiting Game) . Maybe I just notic
e all these things because I¹m in the market for a healthy pink kidney, or maybe its just like having a maroon Toyota T-100 and noticing all the other T-100s on the roads. 'In the News¹ these days is a move (by UNOS***) to increase kidney donation by developing a registry for people who want to donate to a person but aren¹t a match. People on the registry could swap one of their donors for a donor who does match. However, this registry will take action by Congress to be approved. As quoted from Bustler and Hudnall¹s article in the AARP Bulletin, "[In the United States,] we could do as many as 2,000 more kidney transplants a year by swapping donors," says Robert Montgomery, M.D., chief of transplantation at the Johns Hopkins Hospital in Baltimore and the lead author of a recent study that reported on the method's success." UNOS was created under a law that will have to be amended to clarify a swap program ("exchanges between paired donors and patients do not involve money and thus would encourage other transplant centers to create their own paired donation programs.") The bipartisan bill to amend the law is "languishing in a Senate committee, and no one has come forward to sponsor such a bill in the House." And UNOS can¹t begin the registry without such a change to the law.Although the swap amendment is not yet a reality, many people in search of a kidney turn to their network of friends and the internet to find prospective donors (my Blog is an example). Some officials and experts consider open kidney searching as an unethical approach, suggesting that people who are advertising their need for a kidney are "cheating". I plan to write a summary and opinion on the ethical questions surrounding 'advertising¹ for a kidney in an upcoming post, so keep tuned in for that.
El Milagro: Eloy cannulated me today, doing a smooth poke. As he is working on me, the new guy shows up, seemingly late for work. He is explaining to Herman (the Nursing Administrator) and Herman is showing no emotions nor nodding is head in agreement. He is stone-faced. I mention to Eloy something like, "This new guy seems to be a bit of a problem" to which Eloy chuckles and replies, "You are observant, aren¹t you?". After I settle in, I¹m watching Ghana beat the Czek Republic in a rousing upset. Having the World Cup on TV is a definite benefit of being on dialysis right now, since the games are all over the TV and most of the people at the center are interested in them. Its like being in a strange sports bar.
I have noticed them before: the computer-printed signs on 8 1/2 x 11 paper that say "On Stage". Today I ask Eloy about them, and Herman is within earshot and adds some to Eloy¹s answer. These signs are reminders to the staff that they are being watched, Eloy reports. They are "on stage" and the patients are the audience. The administrators are the watchers. Herman adds that the idea is that everyone is here to 'perform¹ for the patients and that the patients are watching too. We are all watching later as the USA and Italy play to a tie, even though the refereeing was horrible (we watched). USA was lucky because Italy contributed to the tie by scoring the USA¹s only score. Just as the game is over I am done with today¹s session.
Notes: In at 72.5 Kg, and out at 70.5 Kg.
*Barbara Basler and Chad Hudnall, (2006) Winning the waiting game. available online at the AARP Website:
http://www.aarp.org/bulletin/yourhealth/waiting_game.html
** Conrad, C.R. (2006) Say it ain¹t so, Zo. Available online at the Star IQ Website: http://www.stariq.com/Main/Articles/P0001675.HTM
*** United Network for Organ Sharing, on the web at www.unos.org
6/16/06
20) Risky Thursday
June 15, 2006
Thursday
El Milagro: Today I get here and Diane, the mean-looking new guy, and Debbie are around; with Debbie working on the other half of the room. Phyllis is supervising. Debbie points me to my chair and I get ready for my session. She begins to cannulate me and finally calls the supervisor over because she can’t get the return needle set right. Herman comes over and pulls the trocar (needle) and sets another one, further up my arm. Of course, you might recall that these trocars are about the size of a ball-point pen cartridge and somewhat painful when being inserted. It is less painful with his expert insertion than it was with Diane’s jabbing it around trying to set it correctly.
So, then Diane continues to set up my tubes on the machine and I settle down to read my book. About 5 minutes later, she returns and, although I am focused on my reading, I notice that she is unhooking my tubes from the leads on the needles. I ask “What’s up?”, and she replies, “We ma
de a mistake… you got the wrong dialyzer…” About that time Phyllis rushes up and apologizes, saying, “I’m really sorry but we messed up and you’re in the wrong chair. Your chair is the next one over. That’s where we set up your dialyzer.” So, in a somewhat perplexed and becoming worried state, I drag my leads, my blanket, book, and other stuff over one chair and sit back down. I’m thinking, “Okay… so what can this mean. I have been having my blood go through this other guy’s dialyzer. He hasn’t had his blood going though mine since he hasn’t been hooked up yet. Is this bad? What’re my risks…. Let’s see; this center had a 2% fail rate last year… am I about to be a statistic?”
Phyllis is trying to make be feel a little better. She reports, “Well this is not good. This is only the second time in my years here that this has happened on my shift. Even though these dialyzers are cleaned thoroughly and disinfected, and should be really clean before each use….. we still keep each patient’s separate. It should be okay.” And then, almost as if she is thinking to herself, she continues, “We have to write up an incident report, call both doctors tonight to report it to them, draw blood for lab on each of the patients to check for anything….” And then she leans towards me and says quietly, “Neither you or he has Hep C, AIDS, or anything that should cause a problem…” and, “If there were gonna be a problem we’d probably already know… so, I think it’s okay.” So, of course, by then I was charting an upward mounting blood pressure and thinking of calling my friend Eddie, the attorney.
Well, this all settled down into a normal-type dialysis session and later Phyllis was even kidding a little, saying, “Maybe Diane and I will get suspended for a day or two… like a vacation”. As for me: I have this blog in which my life at the dialysis center is documented and although it is just my writings me thinks they may hold up in court. I have to say that Phyllis was truly upset about the mishap and it did take about the whole four hours for her to get her humor back. She apologized a number of times.
Friday afternoon: I’m still kickin’ so I guess everything is okay. I recall that it is only by the grace of god that we still exist.
Thursday
El Milagro: Today I get here and Diane, the mean-looking new guy, and Debbie are around; with Debbie working on the other half of the room. Phyllis is supervising. Debbie points me to my chair and I get ready for my session. She begins to cannulate me and finally calls the supervisor over because she can’t get the return needle set right. Herman comes over and pulls the trocar (needle) and sets another one, further up my arm. Of course, you might recall that these trocars are about the size of a ball-point pen cartridge and somewhat painful when being inserted. It is less painful with his expert insertion than it was with Diane’s jabbing it around trying to set it correctly.
So, then Diane continues to set up my tubes on the machine and I settle down to read my book. About 5 minutes later, she returns and, although I am focused on my reading, I notice that she is unhooking my tubes from the leads on the needles. I ask “What’s up?”, and she replies, “We ma
de a mistake… you got the wrong dialyzer…” About that time Phyllis rushes up and apologizes, saying, “I’m really sorry but we messed up and you’re in the wrong chair. Your chair is the next one over. That’s where we set up your dialyzer.” So, in a somewhat perplexed and becoming worried state, I drag my leads, my blanket, book, and other stuff over one chair and sit back down. I’m thinking, “Okay… so what can this mean. I have been having my blood go through this other guy’s dialyzer. He hasn’t had his blood going though mine since he hasn’t been hooked up yet. Is this bad? What’re my risks…. Let’s see; this center had a 2% fail rate last year… am I about to be a statistic?”Phyllis is trying to make be feel a little better. She reports, “Well this is not good. This is only the second time in my years here that this has happened on my shift. Even though these dialyzers are cleaned thoroughly and disinfected, and should be really clean before each use….. we still keep each patient’s separate. It should be okay.” And then, almost as if she is thinking to herself, she continues, “We have to write up an incident report, call both doctors tonight to report it to them, draw blood for lab on each of the patients to check for anything….” And then she leans towards me and says quietly, “Neither you or he has Hep C, AIDS, or anything that should cause a problem…” and, “If there were gonna be a problem we’d probably already know… so, I think it’s okay.” So, of course, by then I was charting an upward mounting blood pressure and thinking of calling my friend Eddie, the attorney.
Well, this all settled down into a normal-type dialysis session and later Phyllis was even kidding a little, saying, “Maybe Diane and I will get suspended for a day or two… like a vacation”. As for me: I have this blog in which my life at the dialysis center is documented and although it is just my writings me thinks they may hold up in court. I have to say that Phyllis was truly upset about the mishap and it did take about the whole four hours for her to get her humor back. She apologized a number of times.
Friday afternoon: I’m still kickin’ so I guess everything is okay. I recall that it is only by the grace of god that we still exist.
6/15/06
19) Tedious Tuesday
June 13, 2006
Tuesday
El Milagro: Dianecannulated me today, since Tori is gone. She has poked me before, wayback when I started, before I picked Tori as my usual poker. The centeris not very crowded this afternoon and writing seems to be like a choretoday…. there are times when I think, “Maybe I shouldn’t be creating a post every time I come for dialysis…”.But then I remind myself that part of the goal here is to document theongoing tedious process of dialysis; with all it’s monotony. I’mspending 12 hours a week here and I want you, thereader, to get an idea of the repetitiousness and gloominess that thisplace can instill when I forsake my curiosity and my mission ofreporting the details of dialysis. So, I will continue to write a postfor each session. That's the way I see it.
Tuesday
El Milagro: Dianecannulated me today, since Tori is gone. She has poked me before, wayback when I started, before I picked Tori as my usual poker. The centeris not very crowded this afternoon and writing seems to be like a choretoday…. there are times when I think, “Maybe I shouldn’t be creating a post every time I come for dialysis…”.But then I remind myself that part of the goal here is to document theongoing tedious process of dialysis; with all it’s monotony. I’mspending 12 hours a week here and I want you, thereader, to get an idea of the repetitiousness and gloominess that thisplace can instill when I forsake my curiosity and my mission ofreporting the details of dialysis. So, I will continue to write a postfor each session. That's the way I see it.
6/11/06
18) Home Alone
June 10, 2006
Saturday
Morning:Well, Liz and Shayna returned to K-ville yesterday for the third weekendof the folk festival, taking 10 watermelons for Cari, and meeting Margo and Laura to share a motel room. Liz called me mid-evening and said thetheatre was “empty” and as she was talking she saw Bobby Tod just arriving in his truck. So, I have the weekend to myself…. I went by themall after work to spy on my daughter, Katie, working at a Swenson’sIce Cream shop. She didn’t see me for several minutes and I got towatch her charm several customers, smiling at them and making smalltalk as they ordered their frozen treats. The shop was busy; onecustomer after another. I noticed that the other places in the ‘foodcourt’ didn’t seem as busy, even though it was about 5:30 pm. Katielooked like she knew what she was doing, and I could tell she wasmaking folks happy since they all seemed to put a contribution into thetip jar. It was nice to see her working hard and seemingly enjoying it.Finally she noticed me leaning against a pillar and motioned me over tovisit briefly until the next customer showed up.
I finally mowedthe lawn this morning, after weeks of letting it grow while we were toobusy to do lawn work. When I called El Milagro, they reported that theywon’t have an open chair until about 2:00 pm, much later than I usuallygo in on Saturdays.
El Milagro: The place is socrowded today that I couldn't get in until 2:30 pm. When I got herenobody seemed to know why it is so crowded… and that makes me wonderabout how they keep up with their scheduling. Sometimes it seems thatthis place is very organized and sometimes it seems that it is chaoticunder the surface of looking organized. But, maybe it is organizedunder the surface of seeming chaotic. More observations may shed lighton this possible paradox.
Tori cannulated me today, and I foundout it is his last day here. He has taken a job as a microbiologistwith the state, in some sort of lab. I wished him well, and shared withhim that now I’ll have to find another cannulator, since Rosie doesn’tusually work on my days. He did a good job in his last cannulation ofJack… and I thanked him. Although every chair was occupied when I gothere, about five or six people left within the first 40 minutes after Istarted. Today I am beside a man who is coughing incessantly and Irealize that the woman who says “Help” is here too. (I can’t imagine there’s more than one person who says “Help”.)Rosie, Connie, James, and Debbie are here working today so it is afestive group of staff. Actually, they aren’t as festive as usual, butI can’t think of a better word to describe this crew, so we’ll callthem ‘festive’.
As I’m sitting here I have soccer on the TV:Argentina v.s. Costa de Marfil (Ivory Coast) on Univision, watchingCrespo score beautifully in the 24th minute. I wish more of the worldcup games were on the main TV stations rather than the sportsnetworks…. although I can probably see quite a bit of the matches here(they have tons of channels on their TV’s). When the game announcersare rambling on in Spanish about the game and not yelling for someincredible play, I’m reading Now Discover Your Strengthsby Backinham and Clifton*. This book takes the strengths-based approachinto the business world, suggesting that when companies focus on theirworkers’ strengths (talents, skills, and experience) rather thantraining to plug the gaps in workers’ competencies, everything worksbetter.
Late into the evening, Lizzie called from Kerrville and reported that Trout Fishing**was great and they had an long and fun day at the festival. Although Imissed KFF, I really enjoyed working in the yard today and look forwardto planting some Salvia Coccinea Coral Nymph tomorrow morning.
* Backingham, M. & Clifton, D.O. (2001) Now, discover your strengths. New York: The Free Press.
** See Trout Fishing in America’s website at http://www.troutmusic.com/
Saturday
Morning:Well, Liz and Shayna returned to K-ville yesterday for the third weekendof the folk festival, taking 10 watermelons for Cari, and meeting Margo and Laura to share a motel room. Liz called me mid-evening and said thetheatre was “empty” and as she was talking she saw Bobby Tod just arriving in his truck. So, I have the weekend to myself…. I went by themall after work to spy on my daughter, Katie, working at a Swenson’sIce Cream shop. She didn’t see me for several minutes and I got towatch her charm several customers, smiling at them and making smalltalk as they ordered their frozen treats. The shop was busy; onecustomer after another. I noticed that the other places in the ‘foodcourt’ didn’t seem as busy, even though it was about 5:30 pm. Katielooked like she knew what she was doing, and I could tell she wasmaking folks happy since they all seemed to put a contribution into thetip jar. It was nice to see her working hard and seemingly enjoying it.Finally she noticed me leaning against a pillar and motioned me over tovisit briefly until the next customer showed up.
I finally mowedthe lawn this morning, after weeks of letting it grow while we were toobusy to do lawn work. When I called El Milagro, they reported that theywon’t have an open chair until about 2:00 pm, much later than I usuallygo in on Saturdays.
El Milagro: The place is socrowded today that I couldn't get in until 2:30 pm. When I got herenobody seemed to know why it is so crowded… and that makes me wonderabout how they keep up with their scheduling. Sometimes it seems thatthis place is very organized and sometimes it seems that it is chaoticunder the surface of looking organized. But, maybe it is organizedunder the surface of seeming chaotic. More observations may shed lighton this possible paradox.
Tori cannulated me today, and I foundout it is his last day here. He has taken a job as a microbiologistwith the state, in some sort of lab. I wished him well, and shared withhim that now I’ll have to find another cannulator, since Rosie doesn’tusually work on my days. He did a good job in his last cannulation ofJack… and I thanked him. Although every chair was occupied when I gothere, about five or six people left within the first 40 minutes after Istarted. Today I am beside a man who is coughing incessantly and Irealize that the woman who says “Help” is here too. (I can’t imagine there’s more than one person who says “Help”.)Rosie, Connie, James, and Debbie are here working today so it is afestive group of staff. Actually, they aren’t as festive as usual, butI can’t think of a better word to describe this crew, so we’ll callthem ‘festive’.
As I’m sitting here I have soccer on the TV:Argentina v.s. Costa de Marfil (Ivory Coast) on Univision, watchingCrespo score beautifully in the 24th minute. I wish more of the worldcup games were on the main TV stations rather than the sportsnetworks…. although I can probably see quite a bit of the matches here(they have tons of channels on their TV’s). When the game announcersare rambling on in Spanish about the game and not yelling for someincredible play, I’m reading Now Discover Your Strengthsby Backinham and Clifton*. This book takes the strengths-based approachinto the business world, suggesting that when companies focus on theirworkers’ strengths (talents, skills, and experience) rather thantraining to plug the gaps in workers’ competencies, everything worksbetter.
Towards the end of my session today, Carol brought Katieby to see the center. Even though the place had been really crowded, bythe time they got here, there were only two of us left. So, to them, Iimagine it looked like a very quiet and relaxing place to be. Eloy andTori both spent some time explaining kidney dialysis to them. AfterCarol left, and I got de-cannulated and patched up, Katie and I wentout to dinner together at El Rey. She caught me up on her adventures inthe world of work, her boyfriend’s travels to Chicago and Corpus,what’s going on with Marie, and her thoughts about college. Marie’sapplying to Sul Ross and Katie is interested in U.T. San Antonio and A& M Corpus.
Late into the evening, Lizzie called from Kerrville and reported that Trout Fishing**was great and they had an long and fun day at the festival. Although Imissed KFF, I really enjoyed working in the yard today and look forwardto planting some Salvia Coccinea Coral Nymph tomorrow morning.* Backingham, M. & Clifton, D.O. (2001) Now, discover your strengths. New York: The Free Press.
** See Trout Fishing in America’s website at http://www.troutmusic.com/
6/9/06
17) Transplant Options
June 8, 2006
Thursday
Transplant Possibilities: When I was approved for a kidney transplant by the Austin Kidney Transplant Program back in January, I was put on a list of people awaiting a cadaver kidney. This list is a central Texas list, including the area around Austin, San Antonio, and Temple. They say the list is about four years long. There are other lists that I could get on in Houston, Dallas, etc., but if I got a kidney from one of those lists I would have to go to those cities for the transplant operation and the recuperation process (about 8 weeks). Aside from a cadaver kidney, the only other option is to get one from a live donor; someone who decides to give a kidney to a person on the transplant list.
Over the past few months, several friends have inquired about how they could go about donating a kidney to me. One of them had an incompatible blood type and the other is still waiting to find out what blood type they are. There are a number of criteria involved in becoming a kidney donor, including age (generally a donor must be between 25 and 49); blood type (for donating to me that would be type A or O); cross-match testing (antigen compatibility has to be established); and generally the donor must be in good health (no heart problems, diabetes, weight problems, high blood pressure, etc.). There is a good article on donating kidneys, entitled Who Can be a Living Donor? (see Links on the sidebar). I would be happily honored to discuss kidney donation with anyone who is interested. One reason I started this blog was to get the word out about my situation and to broadcast my need for a new kidney. Back in Insight* we used to say, "All the blessings already are." and I know that it is also helpful to ask the universe for what you want.
El Milagro: At the dialysis center I feel like I'm back to normal… I’m here for the afternoon session, and the staff all act happy to see me back, and are asking if I plan to stay with the afternoons. Tori cannulated me and asked if I am back for good. I tell him “Yes, I like the late afternoon sessions better than the early morning sessions cause a lot of the time I was wiped out at work”. Jennifer the Dietician visits and reports on my blood work from Monday; it was for a blood count and mine is high! (That’s good) I missed lab work on Tuesday so she advised that I have a week’s reprieve to work on getting my phosphorous levels down some more. I told her I’ve been taking my binders.
While sitting there, I am thinking about Billy Preston dying earlier this week, after years of kidney problems and a transplant in 2002. I remember how crazy I was about his contributions (keyboards on Get Back, etc.) on Let it Be way back in 1970. And, of course, he was a Texan from Houston, which I never knew until reading his obituary. You can read more about Billy Preston at his website, http://www.billypreston.net/
Notes: Weighed in at 73.9 Kg. and out at 71.6.
*Insight Transformational Seminars: online at http://www.insightseminars.org/
Thursday
Transplant Possibilities: When I was approved for a kidney transplant by the Austin Kidney Transplant Program back in January, I was put on a list of people awaiting a cadaver kidney. This list is a central Texas list, including the area around Austin, San Antonio, and Temple. They say the list is about four years long. There are other lists that I could get on in Houston, Dallas, etc., but if I got a kidney from one of those lists I would have to go to those cities for the transplant operation and the recuperation process (about 8 weeks). Aside from a cadaver kidney, the only other option is to get one from a live donor; someone who decides to give a kidney to a person on the transplant list.
Over the past few months, several friends have inquired about how they could go about donating a kidney to me. One of them had an incompatible blood type and the other is still waiting to find out what blood type they are. There are a number of criteria involved in becoming a kidney donor, including age (generally a donor must be between 25 and 49); blood type (for donating to me that would be type A or O); cross-match testing (antigen compatibility has to be established); and generally the donor must be in good health (no heart problems, diabetes, weight problems, high blood pressure, etc.). There is a good article on donating kidneys, entitled Who Can be a Living Donor? (see Links on the sidebar). I would be happily honored to discuss kidney donation with anyone who is interested. One reason I started this blog was to get the word out about my situation and to broadcast my need for a new kidney. Back in Insight* we used to say, "All the blessings already are." and I know that it is also helpful to ask the universe for what you want.
El Milagro: At the dialysis center I feel like I'm back to normal… I’m here for the afternoon session, and the staff all act happy to see me back, and are asking if I plan to stay with the afternoons. Tori cannulated me and asked if I am back for good. I tell him “Yes, I like the late afternoon sessions better than the early morning sessions cause a lot of the time I was wiped out at work”. Jennifer the Dietician visits and reports on my blood work from Monday; it was for a blood count and mine is high! (That’s good) I missed lab work on Tuesday so she advised that I have a week’s reprieve to work on getting my phosphorous levels down some more. I told her I’ve been taking my binders.
While sitting there, I am thinking about Billy Preston dying earlier this week, after years of kidney problems and a transplant in 2002. I remember how crazy I was about his contributions (keyboards on Get Back, etc.) on Let it Be way back in 1970. And, of course, he was a Texan from Houston, which I never knew until reading his obituary. You can read more about Billy Preston at his website, http://www.billypreston.net/
Notes: Weighed in at 73.9 Kg. and out at 71.6.
*Insight Transformational Seminars: online at http://www.insightseminars.org/
6/6/06
16) Sessions and Sets
Monday
El Milagro: "If things are going to go wrong, they go wrong on Mondays" Monica said, as she seated me over an hour late this afternoon. Who knows exactly what happened to make them over an hour late? In the waiting room with the other people waiting for their chairs, there were rumors about someone going to the hospital and that slowing things down. According to Wilma and Diane it was a combination of low staffing, lab day, setting me up in the wrong chair, and running late all day. I settled in for a long session, knowing it would probably by 9 before I got home.
What with the folk festival and coming for dialysis at all kinds of strange times, I haven’t been settled enough to keep up with these posts. So, here are some impressions from the last three sessions.
1) Going in for the early morning sessions isn’t going to work for me. Mostly, I’ve been wiped out afterwards, making it nearly impossible to focus enough to work at my job. I think I need a good rest after dialysis. When I go in the afternoon and can hang out relaxing at home afterwards, I feel great the next day.
2) Phyllis and I have talked about my feeling wiped out and she agrees that some people just need time to rest afterwards. She said that most working people come in the afternoons, which I swear is the exact opposite of what someone said when I started dialysis.
3) The guy who brings in the breakfast tacos for the early morning dialysis patients isn’t that good a cook: his chorizo & egg tacos lack taste and have the consistency of mush.
4) It was nice to settle in for a good nap at dialysis in the morning. I don’t think I’d ever be able to actually work on the lap top there in the mornings, although I have yet to take the lap top in the afternoons either.
So, I'm going back to TTS sessions at 3 pm and that's that.
Kerrville Folk Festival Report: I was feeling much better for the most part at the festival this year. Last year I missed two of the three weekends because of a low blood count. Many of the people who know my situation at the festival mentioned that I had more color in my face this year and looked generally healthier. I had written up some tags with my blog address so I could give them
out to people that I only see at the festival; adding readers to these posts. Basically, I really was happy that I had switched my dialysis schedule around so I could go for two weekends, and although Lizzie would like to go again this weekend, I think I’ll be getting back on my regular schedule and have a weekend at home for a change. The highlights of the 35th KFF for m
e were hearing sets of Matt Anderson, Billy Jonas, Guy Clark, Thad Beckman, Terri Hendrix, and Ray Wiley Hubbard. It was a blues festival this year, it seems. Also, as usual, I enjoyed the camaraderie of working on the kitchen krew with my friends Merriesa and Rick, Andrea, Brian, Cari, and Lizzie. I’ll be back.
NOTE: From the June, 2006 Texas Monthly*
Here’s Looking at You, Kidney
How and why I became an organ donor— and how I kept people from talking me out of it.
by Virginia Postrel
UNTIL LAST NOVEMBER, I’D NEVER THOUGHT about being a kidney donor. I hadn’t known anyone with kidney disease, and like most people, I hadn’t filled out an organ donation form when I’d gotten my driver’s license. I’d never even donated blood. That all changed after I ran into a friend and asked, “How’s Sally?” I got an unexpected answer: “She’s . . . all right,” in a tone that made it clear she was most definitely not all right.
(Read the rest in the curent Texas Monthly!)
* http://www.texasmonthly.com/preview/2006-06-01/postrel
15) Welcome Home
May 26, 2006
Friday
El Milagro: Got in early (5:30 ish) and hooked up and went back to sleep. So, I’m sleeping comfortably and this voice breaks into my sleep: “You need to take you blood pressure medication!” Am I dreaming? My sleepy fuzzy brain is trying to figure this out… cause I’ve been doing fine in the BP department. Then I hear again, louder, “Do you want to stroke out? You’re going to stroke out and end up in a nursing home… is that what you want?”. The voice is at the back of my head… somewhat familiar. No, it’s behind my head and loud enough to wake me up… and very familiar.
So, I lay there and the voice calms down and moves away… but now I’m awake, with my eyes closed, wondering if I’ll go back to sleep. And, it comes clear as I lay there; its Charlie Moritz doing rounds. Soon he gets to me and kicks my chair. I reply, “Who let you out so early?” He takes little interest in me but the dietician reminds us that my phosphorus is still high and they consider briefly changing my binder before the move on to the next victim.
The rest of the day: After I get back home at about 10:30, I get busy watering the plants and doing all the chores that need doing before we leave for Kerrville, and at some point I get very dizzy and feel nauseous. I have to lie down. DAMN! We are in a hurry to get out of town and I can’t stand up! I lie down and actually go to sleep while Liz picks up 30 watermelons and packs the truck. At about 3 in the afternoon I am finally up and ready to go….. 3 hours later than I wanted to go.
Driving through the hill country down to Kerrville is a trip that takes just about the right amount of time to feel like we’re getting away and yet not long enough to get tired of the drive. The country is green and beautiful with lots of yellow, orange, and purple wild flowers all the way. The blue bonnets didn’t really do well this year, but all else is wildly colourful. We pull into the familiar bustle of Quiet Valley Ranch at about 5
with the watermelons and drop them off at the kitchen and drive back to the staff campground to set up our campsite. I’m still feeling a little weak, but am happy to be “home”, saying “Hi” to festival family people I only see once a year here at the ranch. We quickly set up our campsite and I get our red seating pad and get out to the theatre to save out usual seats 7 rows from the front on the left isle. We’ve sat in the same place for years and as people come into the theatre, we say “HI” and everyone is excited to be back and ready for 18 days of the best songwriters in the country to entertain us with their most recent works. It really feels like we’re back ‘home’ because this is where our hearts are and where we all forget about our work-a-day lives and return to an easier lifestyle that only includes minimal trappings of the real world… it’s like returning to the times before the responsibilities of mortgages and careers.
As I sit there waiting for the theatre to fill up and the music to begin, I am overwhelmingly happy to be alive.
Friday
El Milagro: Got in early (5:30 ish) and hooked up and went back to sleep. So, I’m sleeping comfortably and this voice breaks into my sleep: “You need to take you blood pressure medication!” Am I dreaming? My sleepy fuzzy brain is trying to figure this out… cause I’ve been doing fine in the BP department. Then I hear again, louder, “Do you want to stroke out? You’re going to stroke out and end up in a nursing home… is that what you want?”. The voice is at the back of my head… somewhat familiar. No, it’s behind my head and loud enough to wake me up… and very familiar.
So, I lay there and the voice calms down and moves away… but now I’m awake, with my eyes closed, wondering if I’ll go back to sleep. And, it comes clear as I lay there; its Charlie Moritz doing rounds. Soon he gets to me and kicks my chair. I reply, “Who let you out so early?” He takes little interest in me but the dietician reminds us that my phosphorus is still high and they consider briefly changing my binder before the move on to the next victim.
The rest of the day: After I get back home at about 10:30, I get busy watering the plants and doing all the chores that need doing before we leave for Kerrville, and at some point I get very dizzy and feel nauseous. I have to lie down. DAMN! We are in a hurry to get out of town and I can’t stand up! I lie down and actually go to sleep while Liz picks up 30 watermelons and packs the truck. At about 3 in the afternoon I am finally up and ready to go….. 3 hours later than I wanted to go.
Driving through the hill country down to Kerrville is a trip that takes just about the right amount of time to feel like we’re getting away and yet not long enough to get tired of the drive. The country is green and beautiful with lots of yellow, orange, and purple wild flowers all the way. The blue bonnets didn’t really do well this year, but all else is wildly colourful. We pull into the familiar bustle of Quiet Valley Ranch at about 5
with the watermelons and drop them off at the kitchen and drive back to the staff campground to set up our campsite. I’m still feeling a little weak, but am happy to be “home”, saying “Hi” to festival family people I only see once a year here at the ranch. We quickly set up our campsite and I get our red seating pad and get out to the theatre to save out usual seats 7 rows from the front on the left isle. We’ve sat in the same place for years and as people come into the theatre, we say “HI” and everyone is excited to be back and ready for 18 days of the best songwriters in the country to entertain us with their most recent works. It really feels like we’re back ‘home’ because this is where our hearts are and where we all forget about our work-a-day lives and return to an easier lifestyle that only includes minimal trappings of the real world… it’s like returning to the times before the responsibilities of mortgages and careers.As I sit there waiting for the theatre to fill up and the music to begin, I am overwhelmingly happy to be alive.
Subscribe to:
Posts (Atom)