11/23/06

77) Turkey Day Foods for People on Dialysis

November 23, 2006
Thursday

Morning:

As my donation to Turkey Day, for any of you who are preparing a Thanksgiving dinner for people on dialysis here are some recommendations of foods you can prepare*:

Proteins: Turkey, roasted/baked chicken, seafood, pork.
Vegetables: Green bean casserole, salad, cranberry sauce, glazed carrots, corn, zucchini, mixed vegetables, leached mashed potatoes, rice pilaf, cauliflower.
Starches: Plain bread rolls or sticks, 1/2 c mashed potato or sweet potato casserole (soaked), noodles, pasta dishes without cheese.
Beverages: Glass of wine, clear sodas or root beer, water, iced tea/coffee, lemonade.
Desserts: Pies: lemon, strawberry, and other fruits (no nuts); peach/cranberry/cherry cobbler; pound cake, shortbread, angel food cake; jello.

Foods to Avoid:
Mashed potatoes, macaroni & cheese, corn bread stuffing, ham, whole grain breads, beer, dark sodas, pecan pie, chocolates, ice cream, and chocolate chip cookies.

Later after a great turkey dinner: It wouldn’t be Thanksgiving without spending at least a few minutes recalling all that I am thankful for right here and now in 2006. It is easy for many of us American humans to say our thanks from a position of having “everything” in the view of most of the world. And yet, when we say thanks we are thinking mostly about the less materialistic commodities; perhaps because these things are so common to us in our opulence. I paged through a user’s list of “things we’re thankful for” on a popular browser and found most of the responders thankful for family, health, and friends. If we ask people in the third world would they say they are thankful for the little food they have? Would people in Mali be thankful for foreign aid, their ability to make pottery, the few fish they can catch? Or would they too say they are thankful for friends and family? Even though some are starving, would they say they are thankful for health. Would they say they are thankful for just being alive?

Speaking of being thankful for health, even though in many people’s eyes I am sickly and from a medical perspective "on the edge of life" and depending upon a machine to keep me alive, I am thankful for my health. It is my health that helps me to manage and cope with my disability. When I see where I stand in the continuum of people on dialysis in my center, I am very thankful that I am one of the healthiest ones in there. I am thankful for those machines and for the people who serve us in the center; the nurses, the techs, the social workers, and the doctors. They are becoming “friends” in a way.

And, like all the other Opulent Americans, I am thankful for my family; primarily my partner and main squeeze, Liz. I can’t even say how thankful I am for her… because there are no words to express how lucky I am to have a partner in this adventure. And, of course, I am thankful for the kids’ existence: it warms me inside when I'm thinking about Johnny’s Hawaiian adventure, Katie’s determined confrontation with liberty, and Shayna’s “latency phase” in which she and I wrestle, kid each other, and do chores and school projects together. I am thankful for the rest of my family, in-laws, and friends… you all know who you are… “Thanks for being there for me when I need you!” And BTW… please stay there for me to lean on when I need to in the future. (I’m waxing emotional)

Finally, I am thankful for my work. I have always thought of my work in the way that Hanna Arendt** describes the difference between ‘work’ and ‘labor’ in The Human Condition***. For Arendt ‘work’ is one’s life work (vita activa) and I am fortunate to have work that is a joy to engage in on almost a daily basis. Whether it includes my writing, my artwork, or my training social workers, I find it to be a service to the world at large and that seems to me to be a blessing in the truest sense. I do remember that "all the blessings already are".

So, there you have it: my thanksgiving thanks list.

And lastly, of course, anyone who reads this blog on a regular, irregular, or lurking basis, I thank you for being interested in these writings.

Remember, “La conversaci√≥n es el pasto del alma”.

Notes: *Special thanks to Jennifer the Dietician for preparing the above list.
**Hanna Arendt. retreived November 23rd online from Wikipedia at
http://en.wikipedia.org/wiki/Hannah_Arendt
***Arendt, H. (1958) The human condition. Chicago: University of Chicago Press.

76) Phorgetting Phosphorus

November 22, 2006
Wednesday

Morning:
Today I have to confess to Jennifer the Dietician that on Monday, when I told her I had taken my Sensipar last night, I was wrong. When I got home on Monday night and popped open my daily pill organizer to take my evening pills, I noticed that last night’s pills (sensipar and 2 others) were still in there. When I forget to take them, I only notice when I open the organizer box the next time… but for some reason I didn’t notice the next morning. At any rate, she had blood work done on Monday to check my phosphorous and it’ll probably be high, since I didn’t take the sensipar. Today she’ll come to me with my blood rating from Monday and we’ll have to have it out about my irresponsibility about taking my meds.

El Milagro: Heather stuck me today, politely asking if it was okay for her to stick me. She continued that she wouldn’t want any old stranger sticking her, and I replied, “Well, you seem to be okay… I’ll let you know if you screw it up.” She said she usually works at Moncrief’s DaVita center and is filling in here today for the folks out for T-day. Then she reported that she is Matt’s girlfriend and I had to say, “Oh, well that’s different. Now I’m not sure of the choices you make”; to which she retorts, “Yeah. Maybe I shouldn’t tell people that!”, and I decided she was okay. She stuck me pretty good although she wiggled the needle around somewhat to get a good flow, and that hurt.

Jennifer the Dietician came up and reported that my Phosphorous is getting better. I told her about not taking the Sensipar the night before, and she was a little surprised. We agreed to keep watch for another month before we decide to up the Sensipar by 30 mgs. Kim the Vietnamese Nurse (the first person who ever cannulated me) was standing there too, and she thinks I am taking a lot of Sensipar, as evidenced by her eyebrows arching up when Jennifer was talking about uping them.

Detailed Nutrition Report
Albumin ~ 3.8 (Goal = 4.8 or higher) This is my stored protein.
nPCR HD UKM ~ 1.27 (Goal = 1.0 or higher) This is my protein intake and calories.
HCT CALC ~ 36.6 (Goal = 33 or higher) This is my red blood cell count.
Iron Saturation ~ 49 (Goal = 20 – 50%) This is the amount of iron that maintains my red

blood cell count.
Ferritin ~ 146 (Goal = 100 – 800) This is my stored iron.
Calc. Crctd ~ 8.4 (Goal = 8.4 – 9.4) This is my calcium.
Phosphorus ~ 6.7 (Goal = 3.5 – 5.5) This is my phosphorus level, which is traditionally
too high, although it is lowering; last time it was 7.7.
CaxPhos Crctd ~ 71.6 (Goal is less than 55) This is the calcium X phosphorus = product, which

is one way high phosphorus is not good for me and is controlled by binders and Sensipar.
PTH Intact ~ 421 (Goal is 150 – 300) This is my parathyroid hormone level which is helped
by taking my binders and Sensipar.
Potassium ~ 4.6 (Goal = 3.5 – 5.5) This is my potassium level, which goes back and forth
and right now is good.
KT/V UKM Delivered ~ 1.68 (Optimal is 1.4 or higher) This is the rating of the adequacy of
the dialysis: how good it is doing at cleaning my blood.

Notes: In at 73.8 and out at 71.3 Kg.

The Nutrition Report is included for people like Tom T and my son, Johnny, who can read, understand, and are interested in these things.

11/21/06

75) Off Week for Turkeys

November 20, 2006
Monday

El Milagro:
We’re on an “off” schedule this week because of turkey day and the center being closed on Thursday. So, I am coming in on Monday, Wednesday, and Saturday this week. Diane stuck me today, rather quickly and roughly… I can tell when she has something else on her mind cause she just rushes through the procedure as if I’m a manikin.

On the ABC News tonight there is a story about a five-way kidney swap. Herman watched it with me and I wondered how they can do this, cause I thought that kind of swap thing (kidney paired donation) was against the law. But, according to the article following the news report*:

“According to statistics from the United Network for Organ Sharing, 68,934 patients in the United States are currently on the waiting list for donated kidneys. Because of a shortage of donors, 3,886 patients — more than 10 a day — died in 2004 while waiting for a kidney, according to statistics compiled by the National Kidney Foundation.

“Experts said chain-reaction surgeries like this one could help solve the problem.

"This represents a significant step in advancing our ability to identify living kidney donors for potential transplant recipients," said Dr. Bryan Becker, section chief of nephrology at the University of Wisconsin-Madison. "This also demonstrates a significant institutional commitment from Johns Hopkins to align the necessary resources to do this."


Now I have to go back and research what it is that is actually against the law. Maybe this operation was possible through the work of “altruistic donors” wanting to donate kidneys, rather than kidney transplant patients finding the donors or something. I’ll report more about this as I find out.

That’s all for today.

Notes: In at 75.6 and out at 71.6 Kg.
* Childs, D. (2006) Doctors perform historic five way swap. Retrieved online November 21 from ABC News at
http://abcnews.go.com/Health/story?id=2668053&page=1

11/20/06

74) Dialysis in Galveston

November 18, 2006
Saturday

Island Dialysis:
Liz drove me over to Island Dialysis, on Broadway, at 6:15 am this morning. We are here in Galveston for my agency’s board of director’s annual retreat; where they look at the short and long-term directions of the agency, focus and refocus our focus, and update and take on new tasks in each of the committees. We got in late last night and I am doing dialysis here before going to meet with the board for the rest of the day and until noon tomorrow.


Island Dialysis is an unsuspecting store front in a third generation strip mall on the way out of town toward Houston. It is a bit larger than El Milagro, but less crowded it seems. Some things are the same as El Milagro… since both are operated by DaVita: the new translucent yellow paper gowns the staff wear when the bosses are around; the basic procedures; and the staff / customer attention behaviors. The charge nurse introduces herself and the techs who will stick me and watch over me. They are all friendly and much more awake than I am at this hour of the morning. Oh yeah! I haven’t had any coffee today. No wonder I am so dull when the tech asks about my low BP. I just look at her and say… “Uhhh, I do have low BP sometimes… but I don’t know about the mornings, since I don’t check it in the mornings.” Right now it is like 106 over 68 or something similar. Since I’m so fuzzy anyway, how can I tell the actual numbers? But it was low. During my time here today it gets low
er and higher throughout my session and I remember November 11th it was low too. They ask the normal question of whether I’ve taken my BP meds and I am quite sure I haven’t and say so. Heck! Its 6:30 in the morning. What do I know? I feel like my Austin nurse Phyllis shoulda pinned a note on me for these people. Really though… they are very nice and just trying to do a good job on me.

The tech sticks me easily and I am there, looking around to see what its like. The chairs are light green and when the recline they actually don’t change their angle of seating: they just lean back and there you are reclining in a sitting posit
ion. When I throw my blanket over my feet, the chair pops up and I’m sitting upright again. So I have to push against the back and pull my knees up to my chest to fall back into the reclining position. I watch the old Audie Murphy western, Destry*, based on the original Tom Destry movie, Destry Rides Again. By the time I’m done, my BP is okay and I walk out to meet Liz and Shayna, who take me over to The Children’s Center for the board meeting.

The Meeting: I walk in as the board is taking a break, and immediately face a few members; one of whom says, “What happened? Did you cut yourself?” pointing at my bound up fistula. I say something about being on dialysis and there is a gasp and now it is officially public information with more of the board. Thankfully, the meeting is about to start agai
n, so I don’t have to explain everything. I will tell them all to come here for the review, one-at-a-time, as they ask.

Saturday: While I am participating in the board meeting, Shayna and Liz are able to go down to the beach a couple times to collect shells, eat lunch at The Rainforest Café**, go horseback riding on the beach, and swim at the hotel pool. We get out a little early and I shoot up to our room to catch a bit of the Michigan / Ohio State game.

Then we are all off to our federal contract administrator’s (Ralph) place on the bayside on a canal. Shayna, Liz, and I get to go out into the bay on his 35’ fishing boat and it is the perfect end to a perfect day for the girls. That's Shayna in the sunset picture at right ----->



Notes: New Readers --> Click on August for a Welcome Post
*
http://www.audiemurphy.com/mov_1771/film_1771.htm
** http://www.rainforestcafe.com/

11/13/06

73) That Great Election Day

November 7, 2006
Tuesday

El Milagro:
I got in a few minutes late today, which was okay because it took the techs about 15 minutes before they could get to me, since all 4 o’clocks are coming in at the same time. Carol cannulated me smoothly… this is generally becoming like a non-consequential habit and I am getting tired of writing about it here every time; “So and so stuck me...blah blah blah…” It’s becoming such a normal thing that if it were a individual, personal thing I would say it’s like zipping up my pants or turning out the light
or unplugging the flatiron. These are things that I do automatically and usually don’t give them a second thought. Getting cannulated is now like these things except it takes two people. So, I guess I could say its like saying “Hello” or shaking hands, which I generally do with another person. When I am saying “Hello” to myself that might be worth writing about. These situations are usually automatic behaviors subconsciously executed without much thought. Since getting stuck has become like shaking hands, it seems rather obtuse to write about it every time I write these posts. So, maybe that part will drift out of these writings.

These days I am reconsidering what I do want to write about in these posts. I do want to continue writing about my experiences in dialysis… perhaps just not so specifically that I am writing down every little thing that happens, like a process recording.

Today is election day and being here and watching the election returns is exactly what I want to do; even though the Texas election scene isn’t like the rest of the country. Nothin’ in Texas is like the rest of the country, although Austin comes closer. In my district, all Democrats won: Lloyd Doggett, Valinda Bolton, and Mark Strama. On the state scene it looks like both Friedman and Strayhorn took some votes from Chris Bell; and the staunch Republicans all went for Perry. I was surprised at Bell’s showing though… and he mighta coulda won if it hadn’t been for the votes to the independents. It looks like we are in for another governatorial term of social service cuts (Perry’s 10% per agency cut) and Medicaid graft (Accenture Fiasco). We’ll see what the legislature does next session.

Butch Hancock wrote this year’s election song; That Great Election Day


“Who’s gonna be the master and who’s gonna be the slave
On that day… on that great election day?
Who’s gonna vote their conscience… and who’s gonna count the votes
On that day… on that great election day?

Get your little body to the pollin’ place and mark your ballot well
Sit yourself down in a votin’ booth and mark your ballots well
On that day… on that great election day.


Now I ain’t gonna vote for a man or woman who’s full of lies and fear
No no… ain’t gonna vote for man nor woman who’s full of lies and fear
I ain’t gonna vote for man nor beast who’s full of lies and fear
On that day… on that great election day.

I’ll save my vote for a man or woman who has a plan for peace
I’ll save my vote for a man or woman who lives and works for peace
I’m gonna vote for a man or woman who’s heart is aimed at peace
On that day… on that great election day”

11/6/06

72) Katie, Steak, and UT Football

November 4, 2006
Saturday

El Milagro: Carol stuck me today and I waited around anxiously for the UT - OSU game to start at 6... and then watched almost all of it. UT looked great throughout the game. The dialysis center wasn't full when I arrived today. Jo was supervising and had worked people through efficiently. By the time I came in at 4, there were a number of empty chairs and by the time I left at about 8:30, I was one of the last ones out.

Later: After dialysis I picked my eldest daughter, Katie, up and took her to dinner at Texas Roadhouse for a steak. We sat right beside a large screen TV and saw the end of the game while eating. Since Liz & Shayna are in Houston visiting NASA overnight, it was a good time to spend some time with KT. She caught me up on her activities and school and we had a good visit.

Notes: In at 73.8 and out at 72.1 Kg.
New Readers: Click on August for a Welcome Post

11/1/06

71) Halloween Horror

October 31, 2006
Tuesday

El Milagro: What could be scarier than the idea of being in a spooky place where they suck your blood out of your body, squish it through a creepy, squeaky machine and then inject it back into your prostrate, limp body? As I lay there in the dim, orangish Halloween light, I thought these dreary thoughts as Diana stuck those huge hollow needles into my bulbous vein. The blood squirted out the sides of the puncture hole and she cackled fiendishly as she wiped up the spill. I noticed her rubberized hands all white and ghostly and smeared with my blood, still oozing out along the wound. The vein was throbbing, causing the needle to jump furiously until she tapped it down tightly to secure the tubes. The red tubes move and sway as if they are alive and the blood pulses through them on its’ morbid journey.

I watch with a curious despondency and then pass out… drifting into a fitful sleep while my blood flows through the cleansing machine.

Scary, huh?


Notes: In at 75.9 and out at 72.0 Kg.
Scary Picture: I finally got the picture of my "infiltrated" arm on the blog... see it by clicking on April, Post # 4.