August 19, 2006
Saturday
Morning: Call to Herman; they are completely full today, so I have to come in at my regular time. I tell him I’ve got a party to go to and if there is any way to get me in early, it would be great. He says, “Everyone will be here. God forgive, if anyone has to go to the hospital is the only way you might get in early.” Well, we don’t want that. So I call back at 11:30 or so from the Bat Mitzvah services at the “J”, and Ron says I can come in at 2:30, half an hour early.
El Milagro: Debbie canoodled me today and we discussed if she had ever done it to me before. Debbie and Rosie are the techs who were so excited that I was going to come to the early shift, cause I was an easy patient. I think I’ve posted before that Debbie and Rosie are the ‘Fun Girls’; always laughing, joking, and generally making all the patients smile. Today, Debbie says she has been working since 3:30 am this morning, and then she said, “I don’t know if I can do a good job sticking you”, to which I reply, “Believe me; I’ll let you know if you aren’t doing a good job.” So, we are just yaking away about something and somehow get to a point where she says, “Good thing it’s not the old days. You know how doctors used to assess for diabetes? The patient would urinate in a cup and the doctor would smell or sometimes even taste the pee. If it smelled or tasted sweet, they would know the person had diabetes.” So I say, “Yuck! Where did you learn that?”. “In physiology class. Really.” By now I’m cannulated and I’m stuck visualizing Moritz sipping urine from a shot glass and saying, “Yup. You got a tiger by the tail, boy!” . (That’s the same thing he said to me when he first talked to me and Liz about my PKD.)
I read the new Time and watch Mythbusters* experiment with the old cartoon image of the gun exploding like a peeled banana when someone sticks their finger in the barrel. It’s a myth. Herman stops by to give me my second Hep B vacine in a series of three.
Even more important to most of us Texans, these guys showed that we can get better gas mileage in our pick-ups with the tailgate UP. That’s right guys: those of you who drive around with your tailgate down, thinking it gets you better mileage are WRONG and stupid! Adam and Jamie filled up two Ford F-100s and drove them at the same speed and the one with the tail gate UP went 30 miles further. They later showed with a model truck in a water tank that with the tailgate up, air cycles tightly in the bed and causes the major air stream to flow right over it. The airflow in a truck with the tailgate down catches and pushes down on the tailgate. To see this episode #43, entitled “Seasickness – Kill or Cure” watch Discovery Channel on September 20th.
MythBusters is described in Wikopedia as "Jackass meets Mr. Wizard."** As I’m watching, I wonder what kinds of myths there could be related to kidney disease or kidney transplants that Adam and Jamie might want to explore. Do polycsystic kidneys really get as big as basketballs? Does a woman with a transplanted kidney from a man drink more beer? Do people who get kidney transplants form 3rd world countries get sympathy pains? These are myths I just dreamed up, but maybe there are some real myths out there. What would they be?
So, I get done with my dialysis at about 6:30 and shoot out to The Salt Lick*** in Driftwood for Alena’s Bat Mitzvah party. Welcome to the adult world, Alena! And, that’s the way it is today.
Notes: In at 73.9 Kg. and out at 71.2 Kg.
* MythBusters Fan Site (2006) Retrieved online August 20th from http://dsc.discovery.com/fansites/mythbusters/mythbusters.html
** MythBusters (2006) Wikopedia: The free encyclopedia. Retrieved online August 20th from http://en.wikipedia.org/wiki/MythBusters
*** The Salt Lick (2006) Retrieved online August 20th from http://www.saltlickbbq.com/
8/20/06
43) Phosphorous High
August 17, 2006
Thursday
El Milagro: Carol cannulated me again today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I finished my dad’s new book and am really happy he wrote it. I am reminded of a time, some years before my mom died, when, for her birthday or some other gift day, I (or my brother and I) gave her one of those chart-your-life books where one fills in the blanks about their life; their early memories, favorites, etc. My mom was less than thrilled about the gift (my hallucination) and made some sort of verbal response like, “I am way too young to be thinking about what to write for my legacy”. I never saw or heard anything about that gift afterwards. So, a special thanks goes out to my dad for going way beyond the confines of that little book we gave my mom.
And as I finish his book, and I am now getting used to my practice writing on an almost daily basic, I am becoming more and more committed to the idea of adding my own edition to the two Nowicki books that already exist. I picture the day when there are three volumes sitting on the shelf: Kay: Letters & Memories, Kay and John, and something like, Jack, bound in the same library green hard back and basically the same size, typeface, etc. I am sure it would take me at least 6 years to get mine done too. There would be less pictures but there would be way more text to filter through to set up a chronological + relational story. Just dreaming now… we’ll see if I can materialize it.
Jennifer the Dietician rolls up to talk to me about my most recent blood work: my phosphorous is higher than ever before! In the last month and a half it has gone from 6.8 to 7.0 to 8.2! A good level of phosphorous for me would be 3.5 to 5.5. Clearly, the enchilada boycott is NOT working! Jennifer thinks that maybe my parathyroid gland is getting the wrong message and is causing “too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy”* So, she is having Ron order another binder to add: Phoslo. I will take 3 of these with the 5 Renagel at each meal. In ending, she encourages me to give myself an affirmation about my bones: something like saying to myself, "My bones are healthy". I would rather say, "My kidneys are disolving their cysts.", but she has a good point.
Amanda (see Post #4) is here today and I said “hi” and gave her my blog address. She said she was going to write one but somehow never did, so I hope she enjoys mine. She is still on MWF, but came in today because she had to work all day yesterday and missed her Wednesday session.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Phosphorous and chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478
Thursday
El Milagro: Carol cannulated me again today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I finished my dad’s new book and am really happy he wrote it. I am reminded of a time, some years before my mom died, when, for her birthday or some other gift day, I (or my brother and I) gave her one of those chart-your-life books where one fills in the blanks about their life; their early memories, favorites, etc. My mom was less than thrilled about the gift (my hallucination) and made some sort of verbal response like, “I am way too young to be thinking about what to write for my legacy”. I never saw or heard anything about that gift afterwards. So, a special thanks goes out to my dad for going way beyond the confines of that little book we gave my mom.
And as I finish his book, and I am now getting used to my practice writing on an almost daily basic, I am becoming more and more committed to the idea of adding my own edition to the two Nowicki books that already exist. I picture the day when there are three volumes sitting on the shelf: Kay: Letters & Memories, Kay and John, and something like, Jack, bound in the same library green hard back and basically the same size, typeface, etc. I am sure it would take me at least 6 years to get mine done too. There would be less pictures but there would be way more text to filter through to set up a chronological + relational story. Just dreaming now… we’ll see if I can materialize it.
Jennifer the Dietician rolls up to talk to me about my most recent blood work: my phosphorous is higher than ever before! In the last month and a half it has gone from 6.8 to 7.0 to 8.2! A good level of phosphorous for me would be 3.5 to 5.5. Clearly, the enchilada boycott is NOT working! Jennifer thinks that maybe my parathyroid gland is getting the wrong message and is causing “too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy”* So, she is having Ron order another binder to add: Phoslo. I will take 3 of these with the 5 Renagel at each meal. In ending, she encourages me to give myself an affirmation about my bones: something like saying to myself, "My bones are healthy". I would rather say, "My kidneys are disolving their cysts.", but she has a good point.
Amanda (see Post #4) is here today and I said “hi” and gave her my blog address. She said she was going to write one but somehow never did, so I hope she enjoys mine. She is still on MWF, but came in today because she had to work all day yesterday and missed her Wednesday session.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Phosphorous and chronic kidney disease (2005) Davita.com. Retrieved June 28th from http://www.davita.com/articles/diet_nutrition/?id=478
8/16/06
42) Another Day Another Dialysis
August 15, 2006
Tuesday
El Milagro: Carol cannulated me today: another smooth, professional stick. I am reviewing an article for the Children in Schools Journal: a study of protective factors for Hispanic youth in schools. It is well written and shows some important variables to consider in increasing youth’s resiliency so I am suggesting they accept it for publication.
Also am continuing to read my dad’s book and marveling at the job he did in producing it. Jennifer the Dietician comes up to get me to sign off on our plan and I report that I am still enchilada-free for the time being. She says, “I hope that’s the ticket to your decrease in phosphorus and we will see the results this Thursday.”
I’m thinking that right now that Johnny is in Oakland waiting to board his flight to Honolulu. I imagine him walking around the airport looking for the right gate and thinking about what he can eat that is cheap. He arrives in Hawaii at 8 pm their time; 1 am our time.
Notes: In at 74.3 Kg. and out at 72.1 Kg.
Tuesday
El Milagro: Carol cannulated me today: another smooth, professional stick. I am reviewing an article for the Children in Schools Journal: a study of protective factors for Hispanic youth in schools. It is well written and shows some important variables to consider in increasing youth’s resiliency so I am suggesting they accept it for publication.
Also am continuing to read my dad’s book and marveling at the job he did in producing it. Jennifer the Dietician comes up to get me to sign off on our plan and I report that I am still enchilada-free for the time being. She says, “I hope that’s the ticket to your decrease in phosphorus and we will see the results this Thursday.”
I’m thinking that right now that Johnny is in Oakland waiting to board his flight to Honolulu. I imagine him walking around the airport looking for the right gate and thinking about what he can eat that is cheap. He arrives in Hawaii at 8 pm their time; 1 am our time.
Notes: In at 74.3 Kg. and out at 72.1 Kg.
8/14/06
41) The Book Report
August 12, 2006
Saturday
On Friday afternoon my friend Carol at Work asked about Thursday’s dialysis; saying, “Were you canoodled?” and I am thinking ‘canoodled’ is an appropriate alternative word for cannulate.
Morning: I finished Fluke yesterday evening. There was some serendipity in the finishing. The main character is taken into a living organism 650 feet deep in the southern ocean off the coast of Chile and describes the interior similarly to my description of the inside of my right kidney in Post # 38 (August). His description is more writerly: “…a vibrant red chamber that was pulsing with light and glistening with moisture as the walls appeared to breathe. Now this looked like a living thing -- the inside of a living thing.” Of course, as I was reading along, I was thinking of the comparison with my interior kidney views, adding some of the visuals to my own visual characterizations.
El Milagro: Matt canoodled me today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I am reading my dad’s new book, John & Kay. My dad is an 83 year old somewhat cantankerous retired military officer who has published two books for our family. The new book, written over the last three** years, is about his recollections of his “chronological” life story from his childhood years through his retirement. Much of it tracks his military career during the occupation of Germany after WW II, his post-war military assignments related to guided missile and RADAR development, and the connected, noteworthy events in our family history. As I read his recollections, I am amazed at my dad’s memory for dates, places, and events. I wonder, did he make notes throughout his life, or does he just have an amazingly organized file cabinet?
Also, as I read the book, it jogs my memory of various scenes, conversations and stories told by my mom, and I am even learning a few things about my parents’ lives that I didn’t formerly know. And, as I read along, there are times I wonder about the story behind the story. The details are there but I want to know what they were thinking and feeling about the events in their lives? What was the experience like? What music was playing when they were driving from Detroit to Lawrence? I want the scene developed to include the mood and the hyperbole. It seems that in my father’s generation (The Greatest Generation) the 'story' was about “just the facts Ma’am”; we went here and then there and then there. This happened and then that happened. It was a historic generation and chronological dates and places were the important milestones. In my generation, the 'story' became all about the experience. Rock and roll, the civil rights movement, the anti-war movement, and Woodstock were experiences. The dates became less important. When was 'Kent State'? We don't know the exact date but we all know the words to the CSN&Y song "Ohio". The Beatles’ songs are timeless (actually many of the R&R songs from the late 50’s through the 70’s have become timeless; only the music historians know when they were recorded, but every generation since knows the songs… like “summertime blues”). In the Experience Generation (also known as the psychedelic generation) how events were connected, or how people changed in response to their experience was the measure of time. So, as I read my dad’s book, from within my generation, I am trying to read between the lines to find out what the experience of occupying a foreign country was, and what was the experience of his early marriage, and what did they think (their beliefs) about parenting? And then, in the middle of it all, there are places where he does discuss a bit more about his experience, mostly saying the event was "important", "sad", or "happy". Liz points out to me that perhaps my dad purposefully wrote this history without including events or story lines that were disagreeable.
We’ve gone through a few more generations and now my father’s oldest grandkids are in what they call Generation Y.* Gen Y is the wired generation and it functions on information bits (multiple modern media choices). Both Gen X and Gen Y live in the present and generally have little interest in slowly developing stories or histories. In my experience, having three of them as children, they have no interest in old movies that have slowly developing story lines. They get bored and leave to play computer games or communicate with their peers online or via cell phone. They want action and fast moving drama and they want it NOW. They are used to multi-tasking, so they may skip over uninteresting data to find exactly what they are looking for. I believe that the Greatest Generation looks aghast at the Experience Generation as we look aghast at Generation Why. I am proud that my dad published a book about our family and maybe it is now up to me to write one for the family from my generations world view. That’s the way I see it.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Wikepedia (2006) “Generation Y” retrieved online August 11th from http://en.wikipedia.org/wiki/Generation_Y
**"It was three years, not six years." Corrected 9/5/06, based on a phone call from my Dad; who asked where I got the figure of 6 years. I replied that I just figured he started this book after he finished the first one. Now the post is correct.
Saturday
On Friday afternoon my friend Carol at Work asked about Thursday’s dialysis; saying, “Were you canoodled?” and I am thinking ‘canoodled’ is an appropriate alternative word for cannulate.
Morning: I finished Fluke yesterday evening. There was some serendipity in the finishing. The main character is taken into a living organism 650 feet deep in the southern ocean off the coast of Chile and describes the interior similarly to my description of the inside of my right kidney in Post # 38 (August). His description is more writerly: “…a vibrant red chamber that was pulsing with light and glistening with moisture as the walls appeared to breathe. Now this looked like a living thing -- the inside of a living thing.” Of course, as I was reading along, I was thinking of the comparison with my interior kidney views, adding some of the visuals to my own visual characterizations.
El Milagro: Matt canoodled me today. All of the regulars are here today; the woman who cries “Help”, the Hollywood lady, etc. I am reading my dad’s new book, John & Kay. My dad is an 83 year old somewhat cantankerous retired military officer who has published two books for our family. The new book, written over the last three** years, is about his recollections of his “chronological” life story from his childhood years through his retirement. Much of it tracks his military career during the occupation of Germany after WW II, his post-war military assignments related to guided missile and RADAR development, and the connected, noteworthy events in our family history. As I read his recollections, I am amazed at my dad’s memory for dates, places, and events. I wonder, did he make notes throughout his life, or does he just have an amazingly organized file cabinet?
Also, as I read the book, it jogs my memory of various scenes, conversations and stories told by my mom, and I am even learning a few things about my parents’ lives that I didn’t formerly know. And, as I read along, there are times I wonder about the story behind the story. The details are there but I want to know what they were thinking and feeling about the events in their lives? What was the experience like? What music was playing when they were driving from Detroit to Lawrence? I want the scene developed to include the mood and the hyperbole. It seems that in my father’s generation (The Greatest Generation) the 'story' was about “just the facts Ma’am”; we went here and then there and then there. This happened and then that happened. It was a historic generation and chronological dates and places were the important milestones. In my generation, the 'story' became all about the experience. Rock and roll, the civil rights movement, the anti-war movement, and Woodstock were experiences. The dates became less important. When was 'Kent State'? We don't know the exact date but we all know the words to the CSN&Y song "Ohio". The Beatles’ songs are timeless (actually many of the R&R songs from the late 50’s through the 70’s have become timeless; only the music historians know when they were recorded, but every generation since knows the songs… like “summertime blues”). In the Experience Generation (also known as the psychedelic generation) how events were connected, or how people changed in response to their experience was the measure of time. So, as I read my dad’s book, from within my generation, I am trying to read between the lines to find out what the experience of occupying a foreign country was, and what was the experience of his early marriage, and what did they think (their beliefs) about parenting? And then, in the middle of it all, there are places where he does discuss a bit more about his experience, mostly saying the event was "important", "sad", or "happy". Liz points out to me that perhaps my dad purposefully wrote this history without including events or story lines that were disagreeable.
We’ve gone through a few more generations and now my father’s oldest grandkids are in what they call Generation Y.* Gen Y is the wired generation and it functions on information bits (multiple modern media choices). Both Gen X and Gen Y live in the present and generally have little interest in slowly developing stories or histories. In my experience, having three of them as children, they have no interest in old movies that have slowly developing story lines. They get bored and leave to play computer games or communicate with their peers online or via cell phone. They want action and fast moving drama and they want it NOW. They are used to multi-tasking, so they may skip over uninteresting data to find exactly what they are looking for. I believe that the Greatest Generation looks aghast at the Experience Generation as we look aghast at Generation Why. I am proud that my dad published a book about our family and maybe it is now up to me to write one for the family from my generations world view. That’s the way I see it.
Notes: In at 72.3 Kg. and out at 71.4 Kg.
* Wikepedia (2006) “Generation Y” retrieved online August 11th from http://en.wikipedia.org/wiki/Generation_Y
**"It was three years, not six years." Corrected 9/5/06, based on a phone call from my Dad; who asked where I got the figure of 6 years. I replied that I just figured he started this book after he finished the first one. Now the post is correct.
8/11/06
40) Ho-hum in da Dol-drum
August 10, 2006
Thursday
El Milagro: Diane cannulated me today – okay job. She has mentioned several times that my fistula is getting easier to work with as it 'matures'. I wonder again if it is me or her that is maturing. Today is basically a b--o--r--i--n--g session. Read my book, watched the news, and slept. I am still committed to writing a post every time, to fully document the experience of being here. If it is boring for me, I hope it is boring for you, dear reader.
I observe the sunglasses Hollywood (important) lady visit with her sister; a younger version with the same glasses. There is dedication and loyalty in those who sit with their relatives here. Even if they wear smart scarves and shades.
My book, Fluke, is really getting exciting... and I will finish it before John leaves next Wednesday! So it goes.
Notes: In at 73.3 Kg. and out at 71.6 Kg.
Thursday
El Milagro: Diane cannulated me today – okay job. She has mentioned several times that my fistula is getting easier to work with as it 'matures'. I wonder again if it is me or her that is maturing. Today is basically a b--o--r--i--n--g session. Read my book, watched the news, and slept. I am still committed to writing a post every time, to fully document the experience of being here. If it is boring for me, I hope it is boring for you, dear reader.
I observe the sunglasses Hollywood (important) lady visit with her sister; a younger version with the same glasses. There is dedication and loyalty in those who sit with their relatives here. Even if they wear smart scarves and shades.
My book, Fluke, is really getting exciting... and I will finish it before John leaves next Wednesday! So it goes.
Notes: In at 73.3 Kg. and out at 71.6 Kg.
8/9/06
39) In Which Jack Doesn't Meet Jill
August 8, 2006
Tuesday
El Milagro: Carol cannulated me today. She is an all-business tech with her hair pulled back into a pony tail and she rushes around doing her job as if the faster she works the quicker the time will pass. Not too much small talk but friendly enough and seemingly very experienced and professional.
After I am cannulated and ten pages into my reading, the new, bookish, talky-phone woman arrives and is seated right beside me to the right. I am hearing little tidbits about her as Phyllis does her introduction talk and asks if she has any questions. I learn her name is Jill. She has a 14 year old daughter. Jill has lots of friends, extrapolating from the number of phone calls she gets and makes. Maybe it’s just her daughter calling her every few minutes. I am waiting to introduce myself to her but every time I get ready to, she gets on the phone.
So, today I just read on my book, watch the news, and take a snooze.
Notes: In at 74.4 Kg. and out at 71.6 Kg.
Tuesday
El Milagro: Carol cannulated me today. She is an all-business tech with her hair pulled back into a pony tail and she rushes around doing her job as if the faster she works the quicker the time will pass. Not too much small talk but friendly enough and seemingly very experienced and professional.
After I am cannulated and ten pages into my reading, the new, bookish, talky-phone woman arrives and is seated right beside me to the right. I am hearing little tidbits about her as Phyllis does her introduction talk and asks if she has any questions. I learn her name is Jill. She has a 14 year old daughter. Jill has lots of friends, extrapolating from the number of phone calls she gets and makes. Maybe it’s just her daughter calling her every few minutes. I am waiting to introduce myself to her but every time I get ready to, she gets on the phone.
So, today I just read on my book, watch the news, and take a snooze.
Notes: In at 74.4 Kg. and out at 71.6 Kg.
8/7/06
38) Three Day Report
August 3, 2006
Thursday
El Milagro: Diane cannulated me today; again good. Liz met with Jennifer the Dietician today about our eating habits and how we can better rid ourselves of the demon phosphorous. Then Liz came and reported to me while I was on the machine… the upshot being that Jennifer the Dietician thinks our food behaviors at home are good and that maybe they just need to give me another kind of binder or something. She told Liz that whenever a person gets their phosphorous under control, they don’t usually have further problems with it, so that is a motivation to keep up my attempts to get it out of my diet.
Notes: (Forgot to check weights).
<◊><◊><◊><◊> <◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 4, 2006
Friday:
Kerrville: Kim and I are taking Anita Jung* to do a workshop on youth who self-mutilate. Anita mixes data and ideas with participatory exercises in her workshops. So, at some point Anita leads this guided imagery exercise that I participate in… one of those “going to a place that’s relaxing” trance-like thingies. Well, I decide that it is more important for me to have a conversation with my cystic kidneys than to go to a grassy riverbank on the shore of the south fork Guadalupe River, so I transport myself right into my kidney to have a heart-to-heart with my cysts. I pop myself into the middle of my right kidney, imagining it like a large cavern having a glistening bloppy red roof with cysts poking out of the ceiling and walls, and laying about on the floor where I’m sitting (in an easy chair upholstered blue grey with 2 inch silver embroidered fleur-de-lis. I picture the cysts like those fuzzy purplish burrs we
see around Central Texas…. like eryngo without the spiny leaves. I’m sitting there comfortably in the over-stuffed easy chair saying:
“Hello cysties. In the last few years I’ve been very angry and frustrated about your existence in my kidneys. You’re making me fat around the middle; although I’ve promised myself I’ll never buy a pair of Levi 501’s larger than a 34” waist. So, you’ll just have to get squeezed when you multiply. I wonder how it is you decided to grow here and what the Hell you have against me! Is it all about my having a ‘sense of shame, failure, disappointment, and being over-critical’ as Louise Hay** would suggest? Now I’m sitting here in my easy chair, ready to have a heart-to-heart with you. I really want to know what the deal is. I am willing to accept your presence and willing to assume there is a positive intention in your behavior, if you will only describe to me what it could possibly be. I’m on a list to have your house replaced, but I want you to know it’s nothing personal. It’s just that I want to go on living and do it without the constraint of being on dialysis forever. I want to look forward to another sailing trip to the Caribbean with my family and I really can’t see doing that without a new kidney. So, I’d like you to think it over and see if there is a way for you to be part of the solution instead of being the problem. If there is something I can do to ‘heal’ you, please give me some sort of comprehensible sign and I’ll get right on to doing whatever I have to do. Thanks for listening to my diatribes and I hope you don’t take them too personally.”
So, that is basically the conversation I had with the cysts. Anita calls us out of our 'relaxing' trance places and I open my eyes to the bright room. I don’t recall any answers coming forth from the cysts; but logically, why would they answer? They’ve been cursed and diss’d by me for years now so it is really no wonder they are incommunicado. In my mind, I am just starting to build some sort of relationship with them so it may be several sessions before they open up. That’s the way it seems to me.
Notes: *See Anita Jung’s Home of Therapeutic Change (nd) retrieved online June 15, 2006 at http://www.angelfire.com/psy/anita_jung/
**Hay, Louise L. (1987) You can heal your life. London: Hay House UK, Ltd. (LH & Kidneys online at: https://howhealthworks.com/nacho_newsletters/nacho_4.htm )
<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 5, 2006
Saturday
El Milagro: Herman cannulated me today and I recalled his slickness at sticking people, since he hasn’t stuck me in weeks. He indicated keeping track of my blog and we laughed about certain entries. Today again, the woman who says “help” was in the room, quietly saying her 'helps' throughout most of my time on the machine. The Sunglassed Important Lady (see Post #34) is here and some younger preppy relatives visit her, staying a few minutes to 'do their time'. And, the new Bookish Talky-Phone Woman (see Post #35) is adjusting to being here I hallucinate: she is now watching TV more than reading. I read my new book, Fluke* for most of the session; trying to finish it before I give it to my son John to take to Hawaii on August 15th.
I also spend some time visualizing how I want to plant the cactus we bought this morning... they'll go on the south side of the garage that I’ve cleared for our cactus garden.
Notes: In at 74.3 Kg. and out at 71.7 Kg.
*Moore, Christopher (2004) Fluke: Or, I know why the winged whale sings. New York: Harper Collins Publishers, Inc. (See the author’s website online: http://www.chrismoore.com/bookpage.asp?PB_ISBN=006056668X )
Thursday
El Milagro: Diane cannulated me today; again good. Liz met with Jennifer the Dietician today about our eating habits and how we can better rid ourselves of the demon phosphorous. Then Liz came and reported to me while I was on the machine… the upshot being that Jennifer the Dietician thinks our food behaviors at home are good and that maybe they just need to give me another kind of binder or something. She told Liz that whenever a person gets their phosphorous under control, they don’t usually have further problems with it, so that is a motivation to keep up my attempts to get it out of my diet.
Notes: (Forgot to check weights).
<◊><◊><◊><◊> <◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 4, 2006
Friday:
Kerrville: Kim and I are taking Anita Jung* to do a workshop on youth who self-mutilate. Anita mixes data and ideas with participatory exercises in her workshops. So, at some point Anita leads this guided imagery exercise that I participate in… one of those “going to a place that’s relaxing” trance-like thingies. Well, I decide that it is more important for me to have a conversation with my cystic kidneys than to go to a grassy riverbank on the shore of the south fork Guadalupe River, so I transport myself right into my kidney to have a heart-to-heart with my cysts. I pop myself into the middle of my right kidney, imagining it like a large cavern having a glistening bloppy red roof with cysts poking out of the ceiling and walls, and laying about on the floor where I’m sitting (in an easy chair upholstered blue grey with 2 inch silver embroidered fleur-de-lis. I picture the cysts like those fuzzy purplish burrs we
see around Central Texas…. like eryngo without the spiny leaves. I’m sitting there comfortably in the over-stuffed easy chair saying:“Hello cysties. In the last few years I’ve been very angry and frustrated about your existence in my kidneys. You’re making me fat around the middle; although I’ve promised myself I’ll never buy a pair of Levi 501’s larger than a 34” waist. So, you’ll just have to get squeezed when you multiply. I wonder how it is you decided to grow here and what the Hell you have against me! Is it all about my having a ‘sense of shame, failure, disappointment, and being over-critical’ as Louise Hay** would suggest? Now I’m sitting here in my easy chair, ready to have a heart-to-heart with you. I really want to know what the deal is. I am willing to accept your presence and willing to assume there is a positive intention in your behavior, if you will only describe to me what it could possibly be. I’m on a list to have your house replaced, but I want you to know it’s nothing personal. It’s just that I want to go on living and do it without the constraint of being on dialysis forever. I want to look forward to another sailing trip to the Caribbean with my family and I really can’t see doing that without a new kidney. So, I’d like you to think it over and see if there is a way for you to be part of the solution instead of being the problem. If there is something I can do to ‘heal’ you, please give me some sort of comprehensible sign and I’ll get right on to doing whatever I have to do. Thanks for listening to my diatribes and I hope you don’t take them too personally.”
So, that is basically the conversation I had with the cysts. Anita calls us out of our 'relaxing' trance places and I open my eyes to the bright room. I don’t recall any answers coming forth from the cysts; but logically, why would they answer? They’ve been cursed and diss’d by me for years now so it is really no wonder they are incommunicado. In my mind, I am just starting to build some sort of relationship with them so it may be several sessions before they open up. That’s the way it seems to me.
Notes: *See Anita Jung’s Home of Therapeutic Change (nd) retrieved online June 15, 2006 at http://www.angelfire.com/psy/anita_jung/
**Hay, Louise L. (1987) You can heal your life. London: Hay House UK, Ltd. (LH & Kidneys online at: https://howhealthworks.com/nacho_newsletters/nacho_4.htm )
<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
August 5, 2006
Saturday
El Milagro: Herman cannulated me today and I recalled his slickness at sticking people, since he hasn’t stuck me in weeks. He indicated keeping track of my blog and we laughed about certain entries. Today again, the woman who says “help” was in the room, quietly saying her 'helps' throughout most of my time on the machine. The Sunglassed Important Lady (see Post #34) is here and some younger preppy relatives visit her, staying a few minutes to 'do their time'. And, the new Bookish Talky-Phone Woman (see Post #35) is adjusting to being here I hallucinate: she is now watching TV more than reading. I read my new book, Fluke* for most of the session; trying to finish it before I give it to my son John to take to Hawaii on August 15th.
I also spend some time visualizing how I want to plant the cactus we bought this morning... they'll go on the south side of the garage that I’ve cleared for our cactus garden.
Notes: In at 74.3 Kg. and out at 71.7 Kg.
*Moore, Christopher (2004) Fluke: Or, I know why the winged whale sings. New York: Harper Collins Publishers, Inc. (See the author’s website online: http://www.chrismoore.com/bookpage.asp?PB_ISBN=006056668X )
8/2/06
37) Trout Sleeping in America
August 1, 2006
Tuesday
El Milagro: Eloy cannulated me today. I’m still wrapped up in Paris Trout and read furiously until time for the news. Today I’m sitting next to the lady who says “Help!” from under a blanket (see Post # 11 in May). But now I have gotten used to her sporadic calls and they hardly interrupt my thoughts. However, they seem disturbing to the new woman across the way. She can’t see the 'lady who says “help”' (like the "knights who say "Ni"*) and so she is looking around to see who is getting attention. Since the lady who says “help” doesn’t get any attention, the new woman just keeps looking around.
At 5:30 I started watching the news and almost immediately fell asleep. Either the news put me to sleep or I was really tired today…. don’t know which cause I missed the news. Sleeping at the center is getting easier and I have taught myself to do it without moving my left arm, which is attached to my dialysis machine.
Notes: In at 73.6 Kg, and out at 72.8 Kg.
* Knights who say Ni (nd) Retrieved August 2 online from Wikopedia at http://en.wikipedia.org/wiki/Knights_who_say_Ni
The "new mean guy"s name is Matt.
Tuesday
El Milagro: Eloy cannulated me today. I’m still wrapped up in Paris Trout and read furiously until time for the news. Today I’m sitting next to the lady who says “Help!” from under a blanket (see Post # 11 in May). But now I have gotten used to her sporadic calls and they hardly interrupt my thoughts. However, they seem disturbing to the new woman across the way. She can’t see the 'lady who says “help”' (like the "knights who say "Ni"*) and so she is looking around to see who is getting attention. Since the lady who says “help” doesn’t get any attention, the new woman just keeps looking around.
At 5:30 I started watching the news and almost immediately fell asleep. Either the news put me to sleep or I was really tired today…. don’t know which cause I missed the news. Sleeping at the center is getting easier and I have taught myself to do it without moving my left arm, which is attached to my dialysis machine.
Notes: In at 73.6 Kg, and out at 72.8 Kg.
* Knights who say Ni (nd) Retrieved August 2 online from Wikopedia at http://en.wikipedia.org/wiki/Knights_who_say_Ni
The "new mean guy"s name is Matt.
7/31/06
36) Bullet Time Novel
July 29, 2006
Saturday
El Milagro: After calling Herman at 9 and calling back at noon and talking to Ron the Nurse; I am able to start my session at 12:30 p.m. today. This is early. But, no matter what time I start and finish, now that watching TV soccer is over, it seems like 4 hours of dialysis + cannulation and de-cannulation time (30-40 minutes) + drive time (30 minutes round trip) pretty much bites into a Saturday afternoon. I have some time to work in the yard and around the house in the morning, and then time for whatever in the evening and that’s it.
Diana cannulated me again today and again did a good job. She mentioned that my fistula has matured really well because it is so easy to cannulate now. I’m thinking maybe she went to a class or has just practiced a lot since she used to always mess up on me. Clearly this question exists in a social constructionist (post-modern) frame… we are both right from our own perspectives.
Luckily, my four hours passed without incident and seemed to rush along the time track like one of those Japanese bullet trains*. I started reading Paris Trout, by Pete Dexter and could’ve been on a Japanese bullet train for all I knew. This novel, which I heard about on NPR, and which my son John gave me for my birthday, is like a another version of To Kill a Mockingbird with more of a psychological bent. According to the Chicago Tribune, “…(It) doesn’t have any brakes. Hang on, because you won’t be able to stop until the finish.” I was completely sucked in to this novel…. so much so that I was surprised when one of the techies came up and said “You’ve got two more minutes”. We coulda been arriving in Osaka for all I knew. Train time sayonara.
Notes: In at 73.1 Kg, and out at 71.0 Kg.
*BULLET Trains (Shinkansen) (n.d.) Retrieved July 29 online from http://www.geocities.com/tokyo/Island/2589/nmt/bullet.html
Saturday
El Milagro: After calling Herman at 9 and calling back at noon and talking to Ron the Nurse; I am able to start my session at 12:30 p.m. today. This is early. But, no matter what time I start and finish, now that watching TV soccer is over, it seems like 4 hours of dialysis + cannulation and de-cannulation time (30-40 minutes) + drive time (30 minutes round trip) pretty much bites into a Saturday afternoon. I have some time to work in the yard and around the house in the morning, and then time for whatever in the evening and that’s it.
Diana cannulated me again today and again did a good job. She mentioned that my fistula has matured really well because it is so easy to cannulate now. I’m thinking maybe she went to a class or has just practiced a lot since she used to always mess up on me. Clearly this question exists in a social constructionist (post-modern) frame… we are both right from our own perspectives.
Luckily, my four hours passed without incident and seemed to rush along the time track like one of those Japanese bullet trains*. I started reading Paris Trout, by Pete Dexter and could’ve been on a Japanese bullet train for all I knew. This novel, which I heard about on NPR, and which my son John gave me for my birthday, is like a another version of To Kill a Mockingbird with more of a psychological bent. According to the Chicago Tribune, “…(It) doesn’t have any brakes. Hang on, because you won’t be able to stop until the finish.” I was completely sucked in to this novel…. so much so that I was surprised when one of the techies came up and said “You’ve got two more minutes”. We coulda been arriving in Osaka for all I knew. Train time sayonara.
Notes: In at 73.1 Kg, and out at 71.0 Kg.
*BULLET Trains (Shinkansen) (n.d.) Retrieved July 29 online from http://www.geocities.com/tokyo/Island/2589/nmt/bullet.html
7/28/06
35) Moritz Locutus Returns
July 27
Thursday
El Milagro: The 'new mean guy' (see Post # 21 in June) cannulated me today. He doesn't seem so mean anymore: now its more like he is somewhat uncomfortable in his new work environment and trying to overcompensate (or trying to follow the model set by other staff) by making small talk with everyone. I can tell by observation though that he is still not in the 'in group', staff-wise. I still don't know his name, although he is from Tennessee and has been sticking people for four years there before moving to Austin to stick people.
Sometime around 5 pm Dr. Moritz, Nurse Ron, and Jennifer the Dietician come by, surprising me by slipping into my visual field from the left. Usually I know when they are moving about the place checking in on people, but this time they somehow completely snuck up on me.
Dr. Moritz is wearing a muted Hawaiin shirt, khakis, and, in his ear the implanted phone bug. He looks a little like a heavier version of Captain Picard (as asimilated by
the BORG: stardate 43989.1), but on vacation. I wonder if he is listening to instructions from the collective while asking Nurse Ron how I am doing. Nurse Ron reports I am doing great, and Jennifer the dietician adds that my phosphorus is still high. I ask, "Is this with the new lab work?" and she replys that it is, and adds to Moritz that I have completely cut out Mexican food.... Moritz Locutus* gets a question from the collective in his ear and vocals, "beans?"; to which 'J of D' and I both nod 'Yes!'. J of D asks if they should add a new med, and Moritz Locutus wants data: "How many Renagel is he taking?" I reply, "Five at dinner, four at lunch, and 3 with snacks." Moritz Locutus humanity shows through briefly as he arches his eyebrows in surprise and mumbles something to himself. Then the collective whispers some message in his ear and he turn slightly and moves on to the next person. J of D shrugs and tells me she'll be back to report on what the collective decides about my meds.
Sometime later after I've had a little snooze, all the machines begin beeping furiously and Herman and Eloy are rushing around and the other staff are going around pushing various buttons on the machines to stop their beeping. It is a chorus of beeps - on again and off again, like mechanical cricket chirps in the night. Herman announces that the water supply got too low causing all the machines to signal "PROBLEM". I overhear that the staff should set all the machines to (something) and wait until the water level gets back to normal.
There is another new person today; a female, youngish, strawberry blonde, with a hardback novel, grass green blanket, and cell phone. She is ushered in to her chair by the social worker and she sits there waiting to be cannulated for the first time, looking around kind of nervously (I hallucinate). Ron the Nurse looks closely at her wrist, indicating to me she has a fistula, and then as they hook her up from a AV Graft I realize her fistula mustn't be mature yet. I remember how I felt the first time, and now realize why Amanda said to me way back then; "Sorry to meet you this way."
Notes: In at 73.1 Kg, and out at 71.0 Kg.
*Jean-Luc Picard (2006) in Wikipedia: The free encyclopedia. Retrieved online July 27, 2006 from http://en.wikipedia.org/wiki/Jean-Luc_Picard
Thursday
El Milagro: The 'new mean guy' (see Post # 21 in June) cannulated me today. He doesn't seem so mean anymore: now its more like he is somewhat uncomfortable in his new work environment and trying to overcompensate (or trying to follow the model set by other staff) by making small talk with everyone. I can tell by observation though that he is still not in the 'in group', staff-wise. I still don't know his name, although he is from Tennessee and has been sticking people for four years there before moving to Austin to stick people.
Sometime around 5 pm Dr. Moritz, Nurse Ron, and Jennifer the Dietician come by, surprising me by slipping into my visual field from the left. Usually I know when they are moving about the place checking in on people, but this time they somehow completely snuck up on me.
Dr. Moritz is wearing a muted Hawaiin shirt, khakis, and, in his ear the implanted phone bug. He looks a little like a heavier version of Captain Picard (as asimilated by
the BORG: stardate 43989.1), but on vacation. I wonder if he is listening to instructions from the collective while asking Nurse Ron how I am doing. Nurse Ron reports I am doing great, and Jennifer the dietician adds that my phosphorus is still high. I ask, "Is this with the new lab work?" and she replys that it is, and adds to Moritz that I have completely cut out Mexican food.... Moritz Locutus* gets a question from the collective in his ear and vocals, "beans?"; to which 'J of D' and I both nod 'Yes!'. J of D asks if they should add a new med, and Moritz Locutus wants data: "How many Renagel is he taking?" I reply, "Five at dinner, four at lunch, and 3 with snacks." Moritz Locutus humanity shows through briefly as he arches his eyebrows in surprise and mumbles something to himself. Then the collective whispers some message in his ear and he turn slightly and moves on to the next person. J of D shrugs and tells me she'll be back to report on what the collective decides about my meds.Sometime later after I've had a little snooze, all the machines begin beeping furiously and Herman and Eloy are rushing around and the other staff are going around pushing various buttons on the machines to stop their beeping. It is a chorus of beeps - on again and off again, like mechanical cricket chirps in the night. Herman announces that the water supply got too low causing all the machines to signal "PROBLEM". I overhear that the staff should set all the machines to (something) and wait until the water level gets back to normal.
There is another new person today; a female, youngish, strawberry blonde, with a hardback novel, grass green blanket, and cell phone. She is ushered in to her chair by the social worker and she sits there waiting to be cannulated for the first time, looking around kind of nervously (I hallucinate). Ron the Nurse looks closely at her wrist, indicating to me she has a fistula, and then as they hook her up from a AV Graft I realize her fistula mustn't be mature yet. I remember how I felt the first time, and now realize why Amanda said to me way back then; "Sorry to meet you this way."
Notes: In at 73.1 Kg, and out at 71.0 Kg.
*Jean-Luc Picard (2006) in Wikipedia: The free encyclopedia. Retrieved online July 27, 2006 from http://en.wikipedia.org/wiki/Jean-Luc_Picard
7/26/06
34) Fish Phosphorus Report
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
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
7/23/06
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.
Subscribe to:
Posts (Atom)