338) In Which Jack Gets a Happy Button

March 10, 2009
Tuesday

NAMC: Waking up... from about 2:30 am til mid to late afternoon I am waking up... very groggy and spacey at first, when I can basically move my head back and forth, talk hesitantly, and think at about 2 wpm (words-per-minute)... but enough to realize I am still alive... and they are telling me bits of news that I can partly comprehend, like... you did great... the kidney is doing great...

Johnny came in about 9 so Liz could go to Larry's to sleep: she had been up all night with me. So John watched over me while Liz was gone for a couple of hours or so, while I slept and we talked about fluff and I napped a little... I'm sure it was boring for him.Mark came and rolled me with John along and talked about his motorcycle trips... down the halls and around the corners to get a nuclear submarine... or something... where they put a IV radio isotope tracer in my central line and put me in a machine that showed the flow of urine from kidney to bladder which took 30 minutes... and them back thru the maze to ICU.
Liz came back, John left for lunch. John came back from lunch. I dozed.

Pauline the Nurse (from Kenya) comes on and shows me to work the "happy button" which can give me an extra little shot of morphine whenever I feel the pain getting too great. I use it about two times and I can tell you that it sufficiently erases pain any thoughts of pain. And it turns out Paulineis great fun too... she is funny and laughy and makes funny jokes with us and we get to be grand friends and she and Johnny and I have a wonderful discussion about how hard it is to acculturate or keep to the native culture when you have kids and she tells some stories and I tell stories about folks I have known or worked with.
Bernadette stopped by and talked to me about the book that David brought in the morning and and went over the post-op information and then rushed off. Of interest we talked more about politics and her growing up in Switzerland.Liz has to leave again later in the afternoon again to get Shayna & bring her to see me and do her homework under the guidance of MOM. David the Social Worker came to find out how I was doing and I wanted Liz to be here while he was giving info cause it'll all be about insurance and stuff that I want her to know. So I ask David if he can come back when Liz is here and he says, "Sure".

At about 4:30 Pauline gets nervous about getting us up to 4N, the transplant floor. How many have they done recently? Four transplants in three days! That is a lot. Right before we leave to have Loretta the Nurse, who is NOT a gurney driver, take me upstairs, I give the button one more last punch for the road. We pile all my stuff onto the gurney and off we go careening thru the halls and bumping into corners to the elevator UP. Of course Pauline can't come to stay with me in 4N and that is too bad cause I perceive us as great friends already. As we pull up to the room they stop the bed and move it over close to the wall to figure out how to get me in and transferred to my "cheaper" bed, etc. So, I am laying there bored and I move my head to the right and right there, between my railings I see Carol standing back in a little cubby hole between a stack of pull out beds and the wall. "What are you doing in there?" I cry out. "Nothing...waiting for you.." she replies. Huh, well can you come out? Then the nurses move the bed and Carol comes out from her brief entrapment and comes into the room with a 4N nurse Eadi, the two ICU nurses... and we transfer me from the million dollar gurney to cheaper floor gurney. Then John come on and immediately leaves to find the girls. Within three minutes in come John, Shayna, Liz, and Michele! Soon the ICU nurses sign off, then Michele leaves, then Carol and it's just us and the kids and Edie and Lanette the Tech.

The nursing supervisor stops in and we get into a conversation. He is Jeffrey the Super and is curious about where I came from... El Milagro... and then he says, "Isn't there a guy over there that does a blog?"... and I enthusiastically say, "THATS ME!" and then he tells me his wife, Kim, works there and I did a sketch of her and I reply, "Wow. She was the first person who ever cannulated me! ...And I'm ending this whole circle with you being my Nurse Super. Serendipity! " So I feel an immediate bond with Jeffrey and that is good cause my bloated scrotum and painful penis are taking some close investigation and Susan the Night Nurse from Boerne seems just a little too young and cute to make me feel comfortable messing with the family jewels. Jeffrey says he understands completely and we make a little agreement that he'll take care of that specific area while he is here. Right in here sometime John splits.

The regimen up here on 4N is to get weighed and checked on at 6 a.m. (+BP,blood sugar prick), meds @ 7, various other checks & balances til about 10 or 11, when Bernadette stops in for some education, checking up on me, and Q&A. Nursing shift is from 7 to 7 and each new team comes in to check on me and writes their names and numbers on a white board on the wall: our Nurse is Susan from Boerne (whose aunt owns a condo at River Inn and we talk and come up with the question of Jack's river swimming and rafting for Bernadette. The Tech is ___.

It has been a long day with me being Wacky Jacky and Liz being my wonderful Companion, the Voice of Reality and as the day wears down we are TIRED! They bring in a chair for Liz that has a Simmon's Hide-a-bed inside and we make ready for sleep time. Susan and ___ are very helpful, gentle, and professional.

We turn in and I sleep pretty good, given that the team is waking me up every so often. Liz sleeps like a log!

Tuesday ~ Late Night: It was about 24 hours ago now that Dr. Lewis (assisted by Dr. Sankora) added a new young kidney to my old bubbly polycystic ones and I am dozing along peacefully when Kristy the Nurse (why she came on awake and pondering: I am here in peaceful at 2 is a mystery to me) comes in to check my vitals and see how I am doing. Kristy leaves after telling me that she is married to a guy who has been on the list for 7 years! He had one transplant already and is awaiting his second after the first was taken after a bout with Lupus. She turns off the TV and lights and leaves me quiet in the dim outdoor light filtering in thru the blinds, realizing just how lucky I am to be able to continue on the planet with my work, my wonderful partner and great kids and I just sigh and take it all in until I doze off again.

337) In Which Jack Gets a Kidney Call!

March 9, 2009
Monday

Morning: I just got my first kidney call! James the Transplant Caller Guy called at about 8:20 to say that they might have a kidney for me! It is a "high risk" kidney and yet it has passed the cirology tests (?). The kidney came from a guy (?) who had a past history of IV drug use with heroin. He was in treatment and died in a car wreck. Dr. Lewis, my transplant doc thinks the kidney is good and James says I have about an hour to make a decision on it. Okay.

So now what? Liz and I talk it over and decide we need to ask Moritz what he thinks. I call his office at 8:30 and no one is there! I call the Dr's Exchange to have them page him and they can't find him but pretty soon Judith Betts calls and we discuss the kidney and she gives me the questions to ask:

1. What was the creatinine level when the guy died? We want to know how the kidney was functioning then... if 1 or 2 that is good... not 4.
   
2. Are there other reasons he was "high risk" other than the social history of heroin use?
3. How did he die?
4. What does Dr. Lewis think? She reminded me that Lewis is on the cautious side and wouldn't risk as much as other docs might.

So, I thank her and call James back and right in the middle of my conversation, my phone dies... must need charging. So I call him back on Liz's cell phone and ask the Betts' questions and get good answers, as follows:

1. Creatinine was 1
2. No other reasons he was high risk
3. "vehicle related"
4. Don't think I need to talk to Lewis after all, since James' answers are so clean.

Then James informs me that there is another person ahead of me on the list and he is also waiting for that person's decision. I should hang tight, don't drink or eat anything... and btw, he wants to know my height, weight, if I have any ulcers or open sores, any flu or cold, or anything currently "wrong" with me. NOPE! Then I remember my referral for my "murmur" and tell him Venkatesh or someone has the results but I haven't heard anything yet.

So, he says hang tight and he'll call me back just as soon as he gets an answer from the other person higher on the list.

WOW is all we can say right now. The I-Ching I throw throughout these conversations, based on the question, "What will be the result of taking this kidney" gives me hexagram # 54, Marrying Maiden changing in three positions (2nd, 4th, and 5th) to # 48, The Well. For those of you who know, this might be a prospicious reading... it warns that I am subordinate to the situation and it could change in several ways; being disappointing (2), refraining from action to await a more prospicious time, and finally, overlooking my social position to place myself in the service of others... these changes leading to "The Source". So, the way I read this is that it might be a disappointment this time... that I shouldn't just jump at it without forethought, and that the ultimate choice is not mine, but I should put myself in the service of others (the other candidate or the family of the deceased in some way) and that those moves will lead to the source... ultimate success. WOW again.

So, here I am awaiting James call. He just called at 10:40 while I was blogging this, asking more detail about my recent sonogram of my murmur... is that good news?

11:30 am: Call from James the Transplant Caller Guy... I am on my way... need to come up to N. Austin Med Center North Entrance to check in NOW! They'll do tests etc and we're on on the way to Part Two of the ADVENTURE. All goes well? I get the operation tonight! WOW.

12:30 pm: Arrive at North Austin Med. Center (NAMC) and meet with Elizabeth the Admissions person who has lots of forms to sign and "an important question to ask me to think about while she goes off to make some copies of my forms...What do I want from my stay here?"

"Well... how about computer access to keep in touch with the world?" I say. No promise, but Elizabeth writes it on the folder. Elizabeth had asked the important question with a comment about it being a new procedure, which said to me that she wasn't completely going with it herself (my hallucination). It is also new for her to escort us up to ICU to start this part of my adventure... used to be she took people up to fourth floor... which, of course, means nothing to us.

Rachel the Nurse remarks on the newness too. She is used to getting patients right before they go to the OR, not at the beginning of the process... and she likes the new way of doing this cause it shows her more of the patient than she used to see before surgery. They used to bring patients from surgery into ICU and the nurses didn't get a chance to know them as they are... only groggy and spaced out after their surgeries... she seems to like it this way better for more complete patient contact.

Later: Rachel has been here most of the 3 hours I have been here... doing all the hookups, checkups, pokings, and proddings... and she has been GREAT! Very gentle, personable and explaining all she can... which answers about 90% of our questions....

Liz and I are here and still kind of in shock. Johnny has shown up from College Station and is ready to help in any way he can. We meet Mark the EKG guy who puts me in a wheelchair and rolls me down to the EKG machine and talks about his motorcycling up to Wyoming and also informs us that James the "nerdy-looking" Transplant coordinator also has several motorcycles. He also who remarks about my hairless body while attaching leads to my chest for theEKG... sticking about 10 stickies that attach to the wires and remote control unit. He reports back that the EKG is "perfect "! Then we meet Jessie the Transporter who takes me in a wheelchair to get a chest x-ray from Maureen the x-ray Tech. Jessie bring us back to ICU and all the while we were gone Liz is on the phone with friends and relation about this surprising turn of events; it's like we're having a baby! She tells one caller that when I got the call from James the Transplant Coordinator, I said, "I haven't heard from you guys in years!" in response to his salutation from the Transplant Center. As I remember that now I smile atthe remark and think, "Liz is part of this blogging thing now". At the point I talk about my blog, I find that too is Rachel is interested in blogging... telling the story of her sister's baby blog, and how interesting it is to catch up on a daily basis... and how when the new parents don't blog, she get antsy to know what's going on over there with the baby.

So, of course, since Rachel is so easy to talk to, we ask her tons of questions, and some of the answers are: the surgery is about 6 hours long, the stay in ICU afterwards is about a day or so with a catheter measuring every drop of liquid coming out and us recording every drop going in to partly track how the kidney is doing.

Bernadette the Post Transplant Coordinator comes in to give us some education, leave a notebook and a WRITTEN TEST that we have to pass after the kidney comes on board, or we cannot leave the hospital. But it is an open book test so Liz thinks we can't possibly fail... after all, we have Master's in Science (ala the Duck's Breath Theater). Bernadette spends about an hour or so with us and informs us of more than the following:

• The kidney is coming in to San Antonio from somewhere else and will be tested for anti-bodies, HLA, and antigens (tissue testing) before being sent up here
• They will cross match it on the way up to Austin... while the kidney is driven by car
• And it should be ready for me by 7:15, so I am on the OR schedule for about 7:15!
• I will have a catheter and sometimes the kidney is "asleep" for hours or days before it kicks in
• Sometimes people have spasms or cramps after the kidney is put in
• Dr. Lewis will be in to talk to us about an hour before the surgery.

Bernadette brings out a plastic device called a Inspirato and shows me how to use it to get a baseline on my breathing... you blow all your air out and then put the mouth piece in and draw air in while watching a measure on the left that you try to keep in a range, while measuring the amount of air in on the right... doing this about 10 times until you hyperventilate or get tired of this operation... so we establish my Insprato Baseline as 2500.

Bernadette, who happens to be from Switzerland originally and has this really cool Swiss/British kind of accent, short white hair (about my age) and wears clogs and those hiking kind of socks... goes on to explain the complications that can make a transplant complicating:

• Pneumonia ~ stand up lots to breath & walk to stave this off... take deep breaths and cough when I can
• Clotting in bed ~ get out of bed as much as possible... there can also be clotting in the catheter. (right beside this I have noted, "no herbal meds")
• Watch out for SOIL... has lots of microbes and bacteria ~ If I work in the yard I have to double-glove, wear a heavy duty mask and get double clean afterwards ~ best not to garden, but if I have to, take above precautions and wear sun block, and shower afterwards.
• The Campeth totally wipes out my T-cells so I have to be VERY Careful about infections for the 3 to 6 months it takes to re-build them ~ WASH HANDS many times a day with antibacterial soap (they have neat dispensers outside the rooms here that dispense a mouse-like foam that you rub into your hands and it dries right there with no use of a germy towel. COOL!

I'll be in the hospital about 5ays, recouping at home at least 6 weeks, and probably not back to my office for a couple more weeks and then possibly no trainings and contact with the general public for up to 6 months... good time to be developing Webinars and computer driven training exercises! So, we'll know much more as we involve ourselves in this new "adventure" and I expect to continue blogging as long as it seems helpful to someone out there.

Dr. Lewis comes in to visit, give some info, and answer any of our questions... of course we are totally up to our gills in new data from Rachel, Bernadette and actually every person we have talked to so far. Dr. Lewis explains that if the final tests on the kidney are okay it is a

good kidney. He examines me and explained the basic procedure of the surgery... I asked about taking my cystic kidneys out and he said "not unless I need to...there is probably enough room in there for the new kidney and if not he will take the right one out. I ask about getting my former svelt figure back and he gives more information: "we don't want to get more complicated than we have to because each new complication can add to later difficulties and he likes to keep it as simple as possible."

After Dr. Lewis leaves, Rachel says he wants a CAT scan to ensure there is enough room down there for slipping in a kidney under the right one (see picture on sidebar). She runs into another nurse down at the CAT room who is also from Louisiana and on the way back we talk LA food and she likes it spicy... and I tell her about Cypress Grill but she not so sure cuz she hasn't found a good place yet. When we get back to ICU John and Liz are gone but Liz comes back with John and Katie, and gives me one last kiss and promises to be in the waiting room for updates from surgery.

At around 8 Kim the Other Transplant Coordinator comes to take me down to the operating room where Dr. Shawn the Anesthesiologist gets ready to set me up for the surgery, asking how I am, and I honestly say I'm a bit anxious and he replies he'll give me something for that. He plugs into my access and says something that I never quite respond to... cause I'm gone to the ozone......

336) Searching for Puzzle Pieces People

March 5, 2009
Thursday

Morning: I am reviewing all my new communications systems (Facebook, Gmail, reglar email, etc.) and then spend about half an hour "searching" for old friends on Facebook and with Google to no avail. Even though I was always the person in my crowd who wrote letters and "kept in touch" with many of my friends who were shooting out of El Paso like the expanding universe, in these days of being in my "60's" I find myself curious to know the place and status of people I was close to back in the "60's"... and actually those 'close' friends even afterwards. I always enjoyed writing letters and happily had about six friends over those first ten or so years 'out of the nest' that I kept in regular contact with via snail mail. Those were happy days and I miss communicating thru letters. However, I love the idea of blogging, even though the response rate is much less and who knows who is reading this tome. That brings up the question of checking my Feedjit every so often to see where readers are coming from. Some I hallucinate that I know cause of where they come from (John the Son in College Station, etc.) but who do I know in Niles, Michigan? I hallucinate it must by my cousin Elaine in Benton Harbor but thats 34 miles from Niles. Perusing through Feedjit contacts shows that there are folks who read this blog regularly, like Niles and even though I don't know WHO they are... I like that they find something here of interest.

During the Aquarian Era we (I) developed this sense that our friends were part of our counter-culture "family" and as such they are all like lost cousins to me now... and as I get older I have the sense that I need to locate them and settle them in their places like the pieces of a puzzle map of my own family system; that I won't be happy with until I know their position and everything "fits". I recall with warmth the summer solstice celebrations up in the meadows north of Santa Fe and the sense of Family with the "tribe" and the folks from the Hog Farm and our various freinds who lived in Northern New Mexico.

So, of course the expansion of Google and the internet has been a boon for my exploration of the place and status of those distant cousins that my brain sees as "family". And I couldn't even name all of these puzzle pieces, since my brain is also FUZZY... and blank at times... like Steve Martin said, "If you can remember the 60's you weren't there..."

As I wander through my mind I feel comfortable knowing where everyone is and once I have them situated, I don't really even need to know what they are up to on an ongoing basis. For example, Susie is still north of El Paso, Albert is in Sioux City, Richard in Salt Lake City, Cliff in N. New Mexico, Davey in El Paso, Edna in Sherman Oaks, Martha in Florida, and a bunch of us are here in Austin. Collecting these old cousin-puzzle pieces doesn't always have a happy ending: there have been at least four that I can think of who are no longer on the planet and that is always difficult to find out. Their pieces are put away in a little cloisonné box back in the back of my brain where they are preserved, along with any left over feelings, questions, or worries about them.

So, anyway, this morning I Facebook search and Google search for folks that are in the front of my mind... no exciting findings this morning... and I check my own Facebook to see if anyone is out looking for me for any reason and that avenue is empty too.

I just talked to Ann the Nurse to recall if I have a chair at 11:30 or 12:30... and, I find out nothing about the scheduled time... but, I can come NOW if I want: so, I am on my way to El Milagro for a blood clensing... Now. Will blog more from there.

El Milagro: Lizzie was interested in me eating something before dialysis (a good idea) and there was none of my dietary appropriate bread at the house, so I promised her I'd stop at our neighborhood taco place and get a taco... a bacon and egg taco with a donut on the side, to be exact. So I ate the donut and drive off to El Milagro with the taco. On the way I start feeling like "I'm a gonna barf!" [<--(Gilda)] Driving along I am planning my barfing strategy... stop and open the door and lean out or find a bag to toss in and just keep driving: that is the question. I find an empty sandwich bag that fits over my mouth nicely if I need it before I pull off the freeway... so, I am ready. All this brain planning convinces my upset tummy that I am ready for it to toss and somehow that helps it adjust and the gonna toss contractions and that funny tasting saliva decrease and by the time I pull into the parking lot I am feeling better. Did I ever report that ESRD is sometimes really a hassle?

I walk in, weigh myself, and find that I am in chair #1, back to the windows and facing the whole clinic. Rosie the Tech is ready to poke me, reminding me that she said I could come in anytime before 3. I remember "12:30". Oh well... earlier in, earlier out. Carrie the Tech comes over with a friendly "Hi" as Rosie sets me up. We talk about my missing Shayna's game this morning because of my sleeping off a night of pacing off my night wiggles from Restless Leg Syndrome (RLS). Rosie reports that most of the patients have RLS and she wonders what can be done about it. I reply that when I take my meds (Ropinirole) at dinner I usually do fine but when I take my meds after the wiggles start, they don't seem to work as well. And, last night I didn't have them when we were out to dinner so I took them later, after dinner and services.

The Kick Kats did win and Liz reported that Shayna played well. Rosie completes setting me up and moves on and I hook up my earphones and radio: Tom Pittman is hosting Folkways today... and... pretty soon my batteries give out and I have to watch TV. As I am switching my earphones, I wonder what good college basketball is on today. I surf around, finding nothing in particular to watch and settle on a movie that is just starting: The Scorpian King and even though it is not very good, I watch until I find the UT / Kansas game and watch the second half of it. First half the Longhorns reportedly played well and as I get involved with the second half I see us fall behind and prepare to be the 41st team in a row to loose in Kemper arena to the Jayhawks. Oh well. Carrie the Tech de-hooks me and patches me up... and I am outa El Milagro before the game is over... and rush home to catch the last few minutes. So it goes in Saturday Dialyland.

Notes: In at 78.3 and out at 76.4 kgs.

335) Normal Phosphorous Report!

March 5, 2009
Thursday

El Milagro: Rosie sticks me as Kate the NP and Jo the Nurse gather around making small talk... yaking away, having a good time talking about my blood work, going out on the town, diet, and all kinds of wild and crazy things. We are all happy when Kate reports that my Phosphorous is DOWN to 4.9... back in the normal range... I have returned to normal! Kate and I try to figure out why... the blood work was from a week ago Tuesday... after my giving up Renvala and probably about the time I started re-taking my Fosrenol every day at lunch. So, can I keep it up? Jordy the Dietician (with a new haircut) comes up all smiley and curious too about what I did... I kid her about her hair and she tells me about her non-surfing trip to California.

They finally move on and I settle back to doing some work-related reading for Theresa: the state's Plan for Improving Collaboration and Coordination among Prevention and Early Intervention Programs. Long and pretty boring... I highlight stuff to come back to later and make comments on... and am thrilled when Survivor comes on so I can put the report down and watch the tube. Survivor, Gray's Anatomy, and I am out of there...

Notes: In at 77.5 and out at 75.4 kgs.

334) Call to Dialysis Researchers

Please READ this article on Bill Peckham's Blog: written by Peter Laird, MD. This article starts with the following paragraph...

"The American approach to dialysis become entrenched with the usual care of 3-4 hour sessions, three times a week ever since Medicare started paying for dialysis treatment in 1973. This standard of dialysis was chosen due mainly to the business model since the actual treatment standard of care at that time was 8 hour sessions, three times a week. Dialysis patients treated for 8 hours, three times a week had a 10% mortality statistic when Medicare intervened. This has skyrocketed here in America to 24% per year after business models sought their best return of money with shorter and shorter treatments despite worsening patient outcomes."

He goes on to make a case for researchers coming together to provide research in the way of a randomized control trial with a certain type of dialysis patients that are of higher risk in order to quickly show that Medicare that the current payment for dialysis is grossly inadequate and he finally asks all of us... " CKD-5 patients to urge their own health care teams to accomplish this easily randomized and controlled study." This I will do next week at my El Milagro Center.

Dialysis from the sharp end of the needle: An Open Challenge to All Dialysis Researchers

If you agree with the ideas therein, do something to support them. I am forwarding the article to my Congressman, Lloyd Doggett, and my Senators Hutchinson and Cornyn.

ONWARD THROUGH THE FOG!

333) Sketching Dialysis

February 28, 2009
Saturday

El Milagro: I'm in at 2:55 after an already busy day... starting in my overcoat in 35 mph north winds @ 8:30, with the temp at 42 degrees, watching the Kick Kats lose to the Lava Jets, 2-1. Then after a brief sojourn home we zoomed up to N. Austin to meet Ranjana and family for Indian Food at Star of India, where their family shared their favorite Indian foods and described them to us as we ate. Shayna and Monica seemed to have a good time together and Shayna was very adventurous about trying all the delights, liking most of what she tried. Ranjana's niece is living with them while studying at UT, from India so we were interviewing her all about her experiences here, living with her uncle as well as what's different about going to UT. Of interest to me, she reported that the professors here are very informal and the students call them by their first names... which never occurs in India... very much more formal over there. She likes the people she has met through the International Student Center and is happy with her classes. Ranjana and Devon discussed having to supervise her; letting her have enough "freedom" to experience America without giving her too much to upset her parents over in India. We also discussed their ideas about Hinduism and I compared it favorably in my brain of brains with my ideas about Judaism. All in All it was a great time and I want to ensure we do it again.

Ann the Nurse sticks me today and does my nursing eval too. The place seems pretty quiet. I decide to sketch, which is another way to document this experience that I haven't done much of cause many times I feel less competent at sketching than I do at writing. Growing up with Albert, (and several other really "talented" people) had the effect of showing me how less talented I am as well as making me somewhat bashful about my own skills... now, as I write this I do recall Al saying "its 90% perspiration and 10% inspiration..." he always argued for the amount of WORK put in v.s. "talent" and Connie and I (and many others) were overwhelmed with his "talent"... I know that the impact on me, personally, was to find some other way to make a living. Connie was a really good potter and the result for her, I think, was to enter nursing school. At any rate, I decide today to sketch my dialysis experience.

First I sketch out Kim the Nurse adjusting cleaning a machine in preparation for George the Patient. She is wearing her mask and her shield, and I notice that you cannot really tell the personhood of the staff when they are dressed such... so we have the experience of seeing them protected from us as if we were dragged in after a nuclear attack. I note that you cannot really see their faces in their cause of the normal glare... she is in a pony tail and white coat and she blends into the industrial nature of the dialysis machine... the machine and the operator are one... while the chair simply awaits its occupant. Kim is small-statured, just barely larger than the machine, and as she works, in my mind's eye, she enters the machine to make it do its business.

In my second sketch, I really want to emphasize the hanging TVs all over the place. They seem kinda like some sort of personal nourishment machines that hang down from the roof and can get attached to each patient via ear phones and control wires that allow each person to find their own form of video-feed to keep them quiet and quelled during their dialysis. Actually, as I was completing this sketch, I realize that machine #23 is really further away from its waiting chair than it should be... usually these machines are right beside the chair, and I consider moving it closer... but in capturing the scene, I just draw what I see. We are connected to machines thru our plastic tubes and trocars and connected to the black TVs thru our handheld "remote" which are tethered to the walls like self-regulating video nourishment controllers... food channel?; sports?; old movies?; soaps? What's your poison? What will keep your mind off the continual blood letting and cleansing. What will keep you from realizing that you are slowly going thru an operation that keeps you alive while others are out at the malls of America with no experience of the fine line between life and death. Maybe I am being too dramatic, but I can see in the eyes of many of the TV watchers here that when they are not watching the tube, their thoughts are on the futility of their situation. As I try to capture the face of the older woman to the left, I can only capture the vacant side she shows... I know her and know that at times she is happy as a clam... and at other times she looks to me to be very resigned to her chair, as if she could just sink in there and disappear. Today as I sketch her, her features keep looking to me like the skeletal foundations of a person, and I can't for the life of me capture her life... only despair and sunken-downness-in-her-chair. So, finally I allow my rendition of her to stay and move on to brighten her up in her blanket. I give up and make the floor purple.

After sketching I take a nap and wake up just in time to watch the UT / Oklahoma State game up at Iba Arena and to make a long game short, the ghost of Henry Iba is in the arena and spurs them Cowboys on to keep the Longhorn offense from getting hot, eventually beating us, 68 - 59. Oh well. We think we'll still get into March Madness.

So it goes on a Saturday in Dialyland.
Notes: In at 79.3 and out at 75.7 kgs.

332) Paired Exchange Research

February 26, 2009
Thursday

El Milagro: Joseph the Tech cannulates me after Rosie the Tech moves over to stick someone else. The door to the clinic is locked again today and so I pound on it. Susanne the Administrator comes over and opens it and I say something like, "Back to the locked door procedure again?" and she doesn't really respond... only to say that they'll call us when ready. Within seconds Rosie shows up and "calls" us.

Jo the Nurse does my nursing evaluation and says my echocardiogram won't be sent over here until after Dr. Levy checks it out and does the write up. I went for the test yesteday and met Terry the Tech, who did the sonogram very competently (from my "patient" point of view)... sliding the sono-wand back and forth over my chest... finding a good listening spot and staying there... "breathe in and hold it..... okay..." every once in awhile. Terry knows Dr Venkatesh thru their daughters and says she is/was a child prodigy, getting her MD at 20. 20! That's hard to believe for me... but I don't want to suggest she is lying while I am lying right in front of her. She could poke me in the eye with her sono-wand. Terry also says "Dr. V. got that murmer right..." and I was hoping she would say more about what she could see... but, as usual, those folks don't say... and I don't ask anymore. So I just have to wait and see.

Dr. V. has already announced that she is going over the South Austin to work with Herman the Nurse Administrator... and I keep wondering if I should go over there too. Let's see: it's a question/consideration of 1) I HATE CHANGE v.s. 2) I WORRY THAT S. AUSTIN IS A BETTER RUN FACILITY. Back to my echocardiogram: so I guess the report, after Levy will go to Dr. V. and she'll tell Ann the Nurse what to tell me. And it'll be days before I hear.

Today I finally started my exploration and research to see about getting paired exchanges in Austin. I emailed a policy committee that I found on the UNOS website. Elizabeth the Policy Analyst emailed me right back with a nice, long, explanatory email that gives me plenty of sites to check out (research) and some answers to my specific questions. I was impressed with the quickness of the reply and that it came from a real person, as determined by the care of the writing. Unfortunately she reports that they don't have data on how much a paired exchange program helps move along the transplant list. She did offer ideas about getting connected to an existing shared exchange program. I will have to fully explore the seven resources she mentions and will report on this blog the results of that research.

If there are folks out there who are participating in a paired exchange program, I'd like to hear your experiences. Send me a comment.

As is my usual agenda on Thursdays, I listen to NPR's ATC, switch over to the ABC News, switch over to the News Hour with Jim Lehrer, switch over to Survivor, and end up with Gray's Anatomy... it is TV nite in dialy-land. I get absorbed by the cathode ray tube and watch away my time in the chair. My shallow consciousness is absorbed and yet I am also, on a deeper level, planning for my trip to Dallas tomorrow; thinking about meeting Cherry at the plane, emceeing her training, and then providing my own consultation with Promise House's staff on dealing with after hours crisis phone counseling... plotting out what the day will be like, thinking about my materials and hallucintating the kinds of issues, questions, they will have for me to respond to.

So it goes on at Thursday night.

Notes: In at 77.6 and out at 75.7 kgs.

331) Renvela Regurgitation

February 21, 2009
Saturday

Warning: Gross Bodily Functions Described Below!

Morning: Well, I hate to report here this morning that the new Renvela may NOT be the ticket for me. Yesterday I took 4 with my lunch and 4 with my dinner. Late afternoon I was feeling somewhat nauseous and yet I worked, did supervision (where I drank coffee) and later we went out to dinner, where I told Liz I was at a "3" on a nauseousness scale... (just now I have to rush to the bathroom and throw up!)!

15 Minutes Later: I haven't eaten or drank anything since last night, yet I retch up some sort of acidy-tasting something that I can feel coming up from way down in the pit of my stomach, or maybe from the top of my intestines, if that is possible. For the last few hours, since I got up, I had felt bloated, nauseous at about a "4" (on a 10 point scale) and burbling and rumbling down in the pit of my stomach. So, finally I drank a little coffee, knowing it would churn up the rest and make me retch... and I really wanted to get beyond the nauseousness feeling. The retching begins with coughing and then it progresses to these regurgitating motions that involuntarily contract the stomach muscles... like anyone's vomiting... except, since there is no food or liquid down there really... the retching only brings up a mucousy kind of slime. The taste of the slime, however is a burning acidic taste that you want to get out of your throat as soon as you can... so I rush to get a handful of water to wash it away... but it stays there and is in my throat still as I write this. I am taking sips of my coffee, which soothes that throat burn and yet it still burns, telling me the vomit was pretty damn toxic.

So, is this all because of the Renvala? I have to think it is, since I haven't done anything different aside from take those pills. Liz says, "Maybe it's the flu?" because we all would love to find another reason for this... we badly want the meds to work to reduce my phosphorous score.

Since I ran off to toss up, I didn't continue my thread from then: I was going to say that I had also been up several times in the middle of the night with nauseousness that bordered on tossing my cookies and had to stand up or adjust myself to get that pre-throw-uppy saliva out of my mouth. I also took Tums several times, and that seemed to help. Even when I got up this morning those nauseousness feelings continued, at about a "2" and they grew as I read my mail and messed around with my Facebook site.

Now the questions are mounting: 1) Continue with Renvela until Tuesday even tho it is making me feel this way? 2) What about my trip to Laredo on Monday and then Corpus on Tuesday? I can't afford to be throwing up through that business trip. 3) Should I go back to my last week's plan of taking 1/2 a Fosrenol only at lunch? 4) Should I take 1/2 as much Renvela and see if that makes me 1/2 as sick? I guess I'll talk to Rosie or one of the Nurses today at dialysis to see what they think. I could send this post to Rosie via email so she has some time to ponder it before I get there at 1.

El Milagro: I arrive... my chair is ready and Jason the "Kid" is here to do his usual cautious and collaborative poking... "Does that feel alright?" he asks each time he tests the poke hole. I tell Jason about this morning and when he takes my temp we check it to see if I have one (sign of flu). It is 97.5 so no flu.

Ann the Nurse comes over and I tell her my story and she thinks we should call Kate the NP so she does and Kate gives her a new edict: stop the Renvela and go back to the Fosrenol as I was doing. Then Ann does my nursing eval and says she got a fax about my echocariogram and found out it is on Monday. I report to her that I have already had a conversation with them and they had two appointments, and my test is on Wednesday, as I had put in my calendar.

So I am all hooked up, reading the Statesman about why UT's losing and setting back for another Saturday session. I turn on Folkways and again hear some excellent music from the playlist of Kevin O'Connor. Of particular interest to me was Erin Ivey singing 'Chocolate" off her 11th Floor album.

Also Kevin was asking folks to go to tomorrow's "Save Artz Rib House" concert and party at Schultz's. The lineup includes: Del Castillo, Slaid Cleaves, Redd Volkeart/Cindy Cashdollar, Carolyn Wonderland/Shelley King, Warren Hood, Ephraim Owens, Austin Lounge Lizards and Jon Emery w/Art Blondin I will be in Laredo, so I need one of you all out there to be there for me! Artz has been part of our music scene as long as I've been in Austin and we don't want to see his place go down... so git on yer boots and git over to Schultz to mix with the lege and support Art! Let me know if you go.

So, I finish Folkways, hear ATC, and watch the end of Mystic Pizza and the beginning of Steel Magnolias... both good movies, and head on home. So it goes on a Saturday D Day.

Notes: In at 77.5 and out at 75.2 kgs. with an exit temp of 98.6
Don't forget -->

Email from Rosie @ 11:45 pm:
After reading your message, It could be the flu or you could have fluid build up .It is not theRenvela.
I have been working with you for a while and this is what I think: If we take to much fluid your B/P drops.
Makes one think that we have removed all the fluid we need to remove.
Then when we tried to take fluid off and used Sodium to help it makes you to thirsty and your B/P still dropped.
Your stomach has been getting bigger.
So , I think you need to have some Sodium maybe a small dose to maintain your B/P and try to get to 1kg under your weight if possible. The regular sodium at El Milagro that I know of is 140 so maybe you could have 143, I have seen them but 145, 148 and even 150 but I feel that is to much salt for you .It will only make you more thirsty after dialysis .So ,I think that on your next treatment you might suggest 143 sodium just enough to maintain a B/P and get you a little under your weight to see if it helps. The coughing, the nausea, the mucus , phylum and if it is the flu or the fluid build up it will be the safest thing to do and I feel it will help if it is the flu or the fluid build up.
In the mean time gargle and spit water to help you not gain water weight and Drink as little as possible. And stick to your Renvela .

330) Two Posts: Notes on Coping

February 17, 2009
Tuesday

El Milagro: Rosie the Tech sticks me. Jordy the Dietician comes by in her spiffy red and black scrubs and reports that all my labs look great! Except my phosphorous! We talk about my diet and my binders and I report that I've been very responsible... so why the Hell does it keep going up? We agree that I'll start taking my Foserenol again with lunch and see if that is better. Jordy says that Renagel is coming out with a powder that is now with a bicarbonate that they say should be easier on stomachs. It is out in July but she may get some samples sooner... Rosie pipes up that she wants to try it too! She says she tries binders to see what the patients are putting up with. Both Jordy and I are surprised at her statement.

Jordy gives me a card that gives a discount on Sensipar ands we talk about why Lizzie pays for my meds.

Today I picked up a rental car on the way to El Milagro so I can shoot up Hwy 281 to Stephenville tomorrow morning to do some consulting with an agency up there. This is one of my favorite road trips.

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February 19, 2009
Thursday

El Milagro: Rosie the Tech is ready to cannulate me... I am late cause I got wrapped up at work writing an abstract to present at a conference in Virginia and the thing is due tomorrow. So I apologize for getting here at just before 5, knowing that I'm gonna be the last one out and maybe even cause the techs to stay a little later than usual. Rosie says its no big deal and I share that Kathleen the Social Worker had stopped me on the weigh in to show me a handout of a workshop she attended of mine back in '98. So, somehow we get into talking about pain and I share with her about los penitentes in Northern New Mexico* and watching them march up the mountain road flagellating themselves with switches and briars. She moves off that subject to ask me a "professional" questions about a patient who is seemingly anxious, depressed, and unhappy about their dialysis... and, not getting the kind of support they need from their family. I immediately think, "family therapy" (HUH! Well I guess it's cause I resemble one myself) and I suggest Rosie find out from the new social worker if she wants to take on an actual clinical counseling client here. What an idea! That the nephrology social workers would do some counseling! At any rate, I share with Rosie that Katleen the Social Worker at least has some background with counseling and might want to do some of that here so she should ask her first. Then, if that is not kosher for El Milagro social workers, she should refer the patient to a family counselor outside of here. And, the patient should look for someone who practices problem solving or solution focused counseling so they don't have to spend a couple months explaining their whole life history and all the bad crap that has happened to them. Instead they spend their time talking about what the person can do right now to move in the direction of what they want. Rosie takes some notes and walks off to be the curendera that I imagine she really is.

Kate the NP (NOT PA!) walks up with Jordy the Dietician and she wants to discuss my labs; noting again that my blood count is UP, as is my phosphorous (7.1 from 6.6)... not good. We tell Kate about my idea of taking Fosrenol at lunch and I add that it does make me half nausious in the afternoon until dinner, but that that is not as bad as the nausiousness when I take it with dinner and it makes me want to lie down and not move a muscle in the evening. Kate wants to hear about Jordy's idea for changing to Renvela since it is supposed to be a better concoction than the Renagel was for some people. So, Kate says, "...lets give him the new Renvela NOW." and Jordy says I don't want to start it yet and Kate says to me, "So, you just want to continue feeling sick?" with a quizzical look. I immediately get it: why not change? Rather than share with her my "hating change" philosophy, I just decide right there on the spot to "go for it" and not whine abut hating change (even tho staying the 'same' is making me sick... DUH) So, Jordy produces a couple boxes of sample Renvela and my dose will be 5 of them along with 5 Phoslo at each meal. If this works (labs next week) then I can donate all the boxes of Fosrenol I have for some poor patient who cannot afford meds. Kate also clarifies for me again that a Nurse Practitioner (NP) has a Master's in Nursing whereas PA's don't have to have a medical undergraduate degree and therefore don't really have as much medical training. I get it.

Pics: Up On Hwy 281: Old truck with cactus and curious mules.

In the news: Hillary tells some emcees of a teen show in Indonesia that since she is "older" she likes the Beatles and the Stones... "Allright Hillary!"

Report from the Lege: There are 72 bills pending related to immigration and cursing and name calling going on in the house over how we are gonna systematically pass some laws that continue to disenfranchise our Mexican brothers. One asks that all Hispanics have to show citizenship documents to register their kids in school. Now that's a good idea. Even if the kids are born in the US, their parents may keep them outa school to avoid having to register... thereby continuing Texas' claim to be one to the worst educated populations with the highest dropout rate.

And finally he Housing Issue: In Austin we haven't suffered like the rest of the country... but, housing values are down 36% this year from last year... and yet they say that Austin has the 2nd healthiest housing market in the US.

After the news, I watch Survivor and Gray's Anatomy and read some on my MI book. Towards the end of my session, Rosie comes back and as she is unhooking me, she asks, "How come you never write about how you cope with dialysis?" and then follows quickly with, "I mean, I don't read the blog... but you don't really write about coping do you?"

I answer that I have written about coping with dialysis, but most of that was back at the beginning when it was more difficult to cope with. Now it is just part of my life and I don't usually have to purge myself of my "feelings" and talk about coping. She accepted that statement and I weighed out and on the way home started pondering. She may have a point. If this blog is to be helpful to others on dialysis, maybe I should write a tome about coping... or at least part of a post dedicated to how folks can cope with being on dialysis. We'll see what develops... off the top of my head I think, "acceptance of all things as being God's will" is quite helpful... and the way I say this mantra is: "Nam-myoho-renge-kyo" ~~"nam-myoho- renge-kyo" ~~ "nam-myoho-renge-kyo" ~~ "nam-myoho-renge-kyo" ~~ "nam-myoho-renge-kyo" ~~"nam-myoho-renge-kyo"

Another thing to be said is how we can feel better and focus on positive futures by nightly self talk about what we want for our future as we go to sleep... rather than thinking of all our problems and how bad we have it. Concentration on our dreams and what we want for our health, like a new kidney, every night as we drop off to sleep is a good thing to continue doing.

So it goes on a Thursday Dialysis Night.

Notes: In at 78.4 kgs and out at 76.1 kgs.

329) Valentine's Wishes

February 14, 2009
Saturday

Morning: Happy Valentines Day to All ---> here is my card for you! Enjoy.

Well, the day started off just fine, with the Kick Kats winning their first game of the new season, 6 - 0... and better yet; Shayna scored the first goal of the new season on a kick from about ten feet out! Yahoo!

El Milagro: Jackie the Tech sticks me and hooks me up as we discuss computes, viruses, and the internet. Kim the Nurse does my nursing evaluation and I ask her if she can hear my murmur... she listens intently, scrunches her nose, and finally says she can hear it and says, "It sounds like a valve" and I tell her about Venkatesh's referral. She answers that it might not be anything to worry about and I thank her for that.

Tom Pittman is dj-ing Folkways today; playing combination of all kinds of music having to do with lost love, found love, bad love, good love, dog love... you get the idea. Also he dedicates part of his show to Lincloln and Darwin related stuff. He has Brennen Leigh on live and I really like her sound (Brennen plays at Evangelina's Cafe on Tuesdays). I open my MI book and read a chapter or two until UT Basketball comes on: UT v.s. Colorado. I watch... and, they finally win a game. Maybe they were losing cause I wasn't watching.... nah.

After the game I surf around the channels and only find the first Godfather movie and watch the part where Michael comes home after his dad gets shot... and begins to make decisions that will eventually ruin his relationship with Kay. I watch through the discussion about getting even with Sollozzo. Then I put my stuff up and shoot on home to prepare for Shayna & Friends Valentine Sleep-over. Oh boy!

Notes: In at 78.6 and out at 75.3 kgs.