332) Paired Exchange Research

February 26, 2009

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

Warning: Gross Bodily Functions Described Below!

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 -->

WorldKidneyDay 2008
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

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 c
oming 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.

February 19, 2009

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 ta
king 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

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 Milag
ro: 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.


328) The New Social Worker

February 12, 2009

El Milagro:
I get to my chair and settle in, putting in my earphones and listening to ATC report on Clinton's Global Initiatives Conference here in Austin... when asked, Bill says we have to "fill in the gaps as citizens" and describes some of the projects folks are taking on to help the environment.

Rosie the Tech finally gets over here to poke me and set up my machine. We talk about my murmur and she tells me about her brother's mumur that just went away over time. Jo the Nurse is wearing her Valentine's Day Scrub and I remark about it... she explains she is off tomorrow and Saturday, so if she didn't wear it today she'd have to wait a year. I flirt, replying she could wear it anytime she wants.

Sherry the Social Worker comes by with a tall white, spikey-haired woman with a ruddy face, clearly to "make rounds" and introduce this person. Sherry announces that this is her last day... she is going to join Herman the Administrator over at the South Austin center. I think, "this doesn't give us very long to have closure... for a social worker, I mean..." and smile, and say something like, "Well, good luck to you over there..." This new tall person is the new social worker... from San Marcos... named Kathleen. She is cheery and louder than most of our center people... (she is actually talking fairly normally, and I recognize that the other folks here are usually fairly low key). We talk briefly. She has been working in the field for some time, was at MHMR before that... and then she springs that she actually knew me from LifeWorks (Youth Options: where I worked for 10 years and still hang around). Then she adds that she even was in one of my classes! I AM SURPRISED!!

I stare at her intently and I really don't recognize her... she adds that it was an off campus class and she thinks it may have been at TNOYS? I've never taught a class at there. I think the class must've been at LW. So we are stymied about where and we go on to when. She reports that she remembers hearing that I had just found out about my kidney disease and she thought at the time, "what a shock it mustv'e been for me." Well, that puts it at 10... no 11 years ago now... and I briefly trans-derivate back to those times... they seem ancient history now and yet is was only ten years... whew.

Mostly in my brain of brains I can't believe there is a person out there who was in one of my classes and now I don't remember them. There are always people in workshops, conferences, etc. that come up years later and I don't remember them... and I accept that... since I only had them in my reality for a few hours. But someone from a class... I have many hours with them and usually remember them... although there was that woman once who came up to me at a social function and when they were introduced, said, "I was in your class and you gave me the only "B" I got in graduate school!" and I didn't remember her... although she did LOOK familiar. So, Sherry and Kathleen finally move off, stage left, and I am left to my wonders... Sherry calls back something like, "Goodbye... I think I'm gonna cry..." as if she, herself, is surprised at this phase of transition.

Now, later, after coming back out of my thoughts, I notice Kathleen by her somewhat boisterous voice from across the room: this is going to be an animated addition to the place; a kinda non-medical and convivial addition.

I watch the first new Survivor, in the middle of the high desert in Brazil (?) and, as usual, it is interesting to get to see these new folks and watch their adjustment to the whole thing. Then I watch Gray's Anatomy for the first time in awhile... and then it is time to unhook, patch up, and zip on home. So it goes.

Notes: In at 77.5 and out at 75.3 kgs.


327) My Heart Murmurs

February 10, 2009

El Milagro:
Joseph the Tech sticks me today, with Celeste the Nurse doing my nursing eval. Before Joseph is done, Dr. Venkatesh and Ann the Nurse come up to talk about my bloody nose... they report that my blood count from that day was 10 point something; Dr V. says thats low and it is probably just a normal part of my decreasing kidney function due to ESRD. They will be giving me more epo. Dr. V. also asks if she can do my annual "mini-physical" ... "I can't do a real physical here..." and I say, "sure" wondering what makes it a physical at all. Well, the answer seems to be that when she listens to my heart lungs etc., she puts the stethascope INSIDE my shirt! She listens to me carefully and then reports, "I hear your heart murmur". What? I never had a murmur! ... and I say so to her... and she replies, "Well I'll check your records..." as if I am wrong or forgot or something... I assure her that my Dr. Lewis who does my annual transplant physical said my heart was in great shape... and he never said anything about a murmur. Dr. V. nods her head, smiles, and repeats that she'll check my records. Now, what am I supposed to think about that! Seems suspiciously like (and this is a hallucination, BTW) she is more worried and maybe surprised that I think I don't have a murmur so she is going to back off and check it out. Meanwhile, my BP is probably going up, since I am starting to fret about this new data. My machine pumps my arm for a BP check and when done I lean over to see what it is... 108/90... oh well, I guess my body isn't as worried as my head. I settle back, having this biofeedback to calm myself down.

What is a murmur anyway? Doesn't sound too bad. "Murmur". Sounds soft and gentle. I sigh. I go off in my head to another worry today: that my boss Kim is more and more annoyed about the time I am spending on developing a Power Point for a conference presentation... especially since I always maintain that the research on Power Points suggests that they are not really helpful in adult education and the learning process. I maintain that I am not going to use it the way most folks do (although I only hope that is the case), and that my time usage is part of the learning curve, and the goal is actually to learn to get to using video clips that can be put on a disc and used with power point. I think that she thinks that I put too much time into tinkering with the "look" of the thing rather than just doing it in a "wham-bam-thank-you-ma'am" style. I also remind her that I am handling the other tasks I have to do at the same time, but I can tell she is still peeved about the whole thing. I am thinking here today about if I want to try to talk to her about it, hope she reads this message (although she doesn't really read the blog anymore), or if I should just let it lay. I recall my old favorite client from the El Paso projects... an old black woman who had the wiseness of generations of poverty to draw upon when she used to say, "Shit smells when you stir it" about messing with a welfare mistake. So, maybe I just let it go and see what happens.

Dr. V. returns to interrupt my thoughts... "Have you had an electrocardiogram in the last year?" I hear her say. I shake my head and say, "No... I've never had one of those..." She continues that she wants me to have one, just to check out what she heard. Okay. Now I'm worried. Ann comes by several times while we are figuring out when I could get one of these electrocariograms and my anxiety rises... by ABC News time she has an appointment for me for February 25th. Damn! I was hoping to do this thing in the next few days... now I have to worry for weeks... unless I forget the whole thing... which is also possible.

I must sleep. Get this out my head. I doze and wake up to find an incredibly interesting NOVA... thank God for that. NOVA is a two-hour special about the question of science, evolution, and intellegent design. Really an excellent and thought-provoking show. Helps take my mind away into the world of TV-Land.

At the end of my session, Carrie the Tech un-hooks me and I wander out into the night awaiting the coming storm that the techs hear is gonna hit in 20 minutes. The wind is up and the drive home is swooshy in the truck. Oh, and I read on the appointment slip that I am up for an ECHO-CARDIOGRAM, not an electrocardiogram.

Notes: In at 77.8 and out at 75.3 Kgs.


326) Face Book Onslaught

February 7, 2009

Face Book! Argggh. Everybody's on Face Book! Ya gotta be on Face Book. "Not me... that's for kids!" Etc. Etc. Well, this morning on NPR's Weekend Edition... According to Andy Carvin we ALL have to be on Face Book "if we have anything to say in the public realm". Now there's 150 Million peeples on FB! So, do I have anything to say? Some would say, "
Not really!" and they are the ones who know me.

So, if I want to make a statement in the public realm, I gotta get on Face Book. So, now I'm on Face Book you all! You can find me by clicking here --> Jack . Actually, I guess we could blame my old friend Cliff for inviting me to FB and it was his putting a picture of he and Skinny from 1975 the encouraged me to dig up a pic of me and Susie from 1973 or so... and then a pic of me in 1950... and then I went nuts and found a ton of pics of me to put there. Arrogance? (head shrug no) Self-centered? (maybe) Narcisistic? (-Well Dusty thinks so, but I've looked it up and all the criteria don't match... whew!)

I just want to put out there for anyone to see...
that I am looking for an old friend,
or a new friend,
or a complete stranger to consider donating a kidney to me. Anyone interested can find out more by reviewing the links in the top sidebar. The longer I am on dialysis, the more anxious I am to get a kidney! So, that drives my self promoting behavior at this point.

El Milagro: In at 3 today, right on time. As I find my chair I turn to ESPN and watch UT lose to Nebraska in the last few minutes. This is their third loss in a row. I get over my loss in time to say Hi to Carrie the Tech, who sticks me very competently. I keep watching ESPN and MSU is on next against Indiana... and they surely will win this one. I turn down the sound, hook up my radio and earphones and tune into Folkways to hear some Great music. First thing I hear is a cut off of Asleep @ The Wheel's new album with Willie... Willie and the Wheel. I take out the newest Journal of Systemic Therapy, which I brought to review since the whole issue is dedicated to "walk-in" and "single-session" therapy, with articles by Bobole at Our Lady of the Lake in SA and Scamardo here in Austin. I am particularly interested cause of working with TRIAD in Houston a year or so ago to establish a two-tiered crisis center, where they take walk-ins and folks who want more than just a crisis session... so I am scanning this issue with Folkways in my ears and MSU on the tube. What more could be better?

Oh yeah... getting a kidney!

Later: I've reviewed most of the journal articles and we will make PDFs of them for our electronic library. As I'm reading and getting interrupted by the beginnings of Saturday's All Things Considered stories and news (they always interrupt in a way music doesn't). Plus, today my right leg is twitching so it too is jumping around, demanding my attention.

Finally I decide to lay back and just watch some TV; finding the end of Bill Murray's Meatballs and the first part of Apollo 13. As I finish my session, Rosie the Tech checks my BP and it is lower than the standard so I jump around to raise it... doesn't work so she finally offers me the choice of some broth, water, or shoot back some saline into me... I take the saline, and she says, "I'll just give you 100 cc's." Ann the Nurse and Rosie are discussing my dry weight again, both saying they think I am still gaining weight cause I shouldn't bottom out my BP at the end of treatment. So, it takes an actual 300 cc's before my BP comes up to 100/50 and they cut me loose. Rosie suggests I bring some saltines or pretzels in a little snack pack for the end of my sessions, if needed. Ann and Rosie are also thinking my dry weight should now be about 76 kgs... 167 lbs!

Yikes! That's more than I have ever weighed in my life! Must remember to stay in the present! All is well... accept... "asi es la vida"... "nam myoho renge kyo"... breathe...

Notes: In at 77.3 and out at 75.6


325) Big Bad Bloody Nose

February 5, 2009

Bad morning so far. Woke up at 6 am with a bloody nose that didn't stop until about 9:15.
At times it was pouring like a faucet, at times dripping either down my throat or out my nose, depending upon which way my head was tilting. Right now it is not bleeding but still dripping clearish liquid from all the Neo-synephrine I've shot up there... and I have an appt with Dr. Leary my Nose Guy at 1:45. He will sit me down in his chair, look up in there and say, "Ah yes. I see a small point that we should zap." and then will laser it and I'll be done in about 10 minutes and it'll cost $30 on my insurance. I appreciate Dr. Leary and his nurse for always being able to get me in the same day I have one of these BN's that I consider "bad". All this is due to my "not so bad" case of HHT which causes my regular but not-so-serious nosebleeds. Every so often I get a 'bad one' and whenever the 'bad ones' become frequent I call my Nose Guy for a zap... today is the day.

My mom also had HHT and I recall her nosebleeds taking her completely out of the scene at times when I was still living with my parents. Mine didn't really develop until I was in my forties, but they have progressed since then. My daughter Shayna seems to have the same HHT, which can be signaled by spontaneous nosebleeds for no apparent reason.

Before 9:30 it has started again... more squirts, lay back, try all the tricks I know to stop it... and nothing is doing much today. I call the office and tell them I won't be in til I see Leary, and maybe not then...

I get to Leary's office right at 1:45 and again it has pretty much stopped. I read on my MI book, borrowing a highlighter from the secretary. Pay my co-pay and wait. Since Betty his Nurse has slipped me in between folks who have appointments, it takes about 20 minutes or so before I get in. He comes in and I describe the morning and how I have already arranged for a Blood Count when I get to El Milagro, and that they have been saying my count is 'somewhat low' but I don't know the numbers. He has Betty call over there and fax my numbers so he can check them out. Then he looks up both my nostrils (non bloody one first) and says, "There's some sign of recent scabbing up here." and moves over to the other one and checks it out, saying something like, "Evidence of bleeding in the general area of past problems". He says he wants to get the info from the dialysis center, and then he squirts me with some deadener and lets me sit for awhile while he starts with another patient.

I sit, feeling quite spent... in fact, I think to myself, "If I could get this chair to lay back, I'd take a nap." He returns with a fax showing that my blood count was in the 12s in November, the 10s in December and is now down to the 9s at the end of January. His take is that it looks like my end stage kidney problem is lowering my count over time and it makes sense they are giving me more Epogen, but he also warned that I should tell the nurse to cut back on my Heparin if possible, since Heparin thins the blood and my nose bleed today doesn't need to be restarted at dialysis. He lasered my nose, packed my nose with some disolvable stuff, and let me go. By the time I was driving south to El Milagro, my nose was dripping some diluted blood.

El Milagro: I arrived almost on time and Joseph the Tech stuck me and took a tube of blood, which I gave him a card with Leary's fax number to pass on to the lab. I called Jo the Nurse over and while she did my nursing eval I caught her up on the doctor's visit and his recommendation to cut the Heparin if possible. She nodded in agreement and put a sticker on my machine warning all other staff to not give Heparin. Rosie the Tech was curious later when she came by, so I explained to her too.

By the time I was all set up I had inadvertently sucked some of the packing back thru my nose and from that time on until I left, my nose dribbled back down my throat, although frequent testing of the discharge into kleenex made me feel okay, since it was very light, watery blood, rather than the 100% variety I had in the morning. I wonder, as I am sitting there exactly how much blood I lost today.... enough to move thru my stomach and intestines.... enough to make me feel shaky and have tingly fingers in the morning... and enough to put me to sleep for a long snooze right now.

I wake up and watch an AMC movie about a woman who gets pregnant by a GI in WWII... quite a risky subject in the 40's with Betty Hutton and it's a Comedy, to boot. By the time it is over I have had my first few laughs of the day... and am ready to go home and turn in. What a day.

Notes: In at 78.3 and out at 76.0


324) Just Another Tuesday

February 3, 2009

El Milagro: I'm almost 1/2 an hour late today after rushing around helping the office gang get ready for tomorrow's Youth in Action @ the Capitol Day.... our bi-annual event that brings youth from all over the state to the capitol to rally, learn about advocacy, and meet with their legislatures over the "youth agenda".

Celeste the Nurse is ready to cannulate me and says I should talk to Dr. Venkatesh about my dry weight being raised, since I think I am gaining weight. Pretty soon Kate the PA rushes in and collects the social worker and dietician to make rounds.

I am pretty tired today too... having stayed up until 25-year-old hours developing a website for the Bat Mitzvah Girls on one of those Websites for Dummies services. I was convinced to use it by their claim that Time Magazine claims they're one of the "top 10", by my lack of time to do some more in-depth research, and by the service's template that has Maya's favorite lime-ish color. So, anyway, now I've built this fairly easy web page but the thing is that they make it so simple to build that now I don't like the lack of flexibility I have in working on it.... for example, its about 1/10 the control I have on this blog. I may end up transferring my domain name somewhere else.

I turn on ATC as I jot these notes and now will settle back and take a nap...

Kate the PA is shaking my leg gently... and wants to talk about my labs (what can we say), and if I have any other medical issues to discuss. I don't... so we make some small talk, she encourages me to take more binders, and she moves off to talk to someone else. I snooze more. In fact, I snooze almost to the end of my session, and then wake up to watch some TV til Carri the Tech comes over to unhook me. So it goes.

Notes: In at 78.9 and out at 76.4