352) Faux Pas #2 after a Good Day

March 31, 2009
Tuesday

Home: The latest faux pas embarrassed us this morning at about 7:10 a.m. when we checked in at S. Austin for our lab work with the nice receptionist who keeps her key board under the desk, making it look like she is scratching her knees when I talk to her. She is a sweetie however; and I must remember her name for this tome.

This morning she says they don't have my orders yet, which is the case frequently since Rodney and I started coming here for lab-work. She recommends we ask Bernadette to send them to the lab fax so they don't have to track them down every time... at the central fax they just stack them in a box and don't forward them for awhile... I promise to email Bernadette with the new fax number. So, while she is tracking the order down, we sit patiently under a TV with cartoons on... ycch.

As we are sitting there Liz is looking thru her stuff and checks her calendar... only to find that our LAB APPT. IS TOMORROW! Her response; "I hate getting up at 5:30 for no reason!", while I go up to the receptionist, who laughed and said, "See you tomorrow. Call 'em about the fax number."

So we drive home mumbling grumbles all the way... and Liz now has to ask Kathy down the street if she'll take Shayna to school again tomorrow, and I have to contact Bernadette. The good news is I am home in plenty of time to take my meds at their correct time: 8:00 am.

So, what's the lesson for those of you who are in this same boat: just post transplant and adjusting to not taking binders and working your life around the dialysis schedule; and adjusting to being home on house arrest for about 6 weeks and having to get to Labs at 7:30 am, remembering to take your meds twice a day exactly 12 hours apart, and eating practically whatever you want within a heart-healthy diet?

I think we'd recommend writing everything down in the same place instead of keeping appointments in some calendar you might not check every single day, for starters. The post-transplant person is useless for keeping data in their heads... at least I have been. As I've said before there are emotional changes going on in you, the anesthesia supposedly takes a month or so to totally wear off, so you really can't be counted on for anything unless you are good at keeping detailed lists and checking them often.

So it goes in post-transplant land... of note, the Flatlanders will be on KUT live at noon today! On KGSR @ 2 pm and then at Waterlou Records playing live @ 5! Today is their Hills & Valleys Record Release. Then they are on the road: of interest to some of our friends ---> May 1~Abilene @ Grace Museaum (David);
May 17~Salt Lake City @ The State Room (Richard); May 19 ~ Seattle @ Triple Door (Brian); June 1 ~ Santa Fe @ Paolo Soleri with Lucinda Williams (Cliff); June 4 ~ Austin @ UT Ballroom (Austinites); June 5 ~ Dallas @ House of Blues (Cathe, Wayne, Dick). Check out the full schedule at the Flatlander's Website. BTW, this is what Lovely Lizzie got me for an anniversary present!

[I am reminded of one of my favorite sayings just now:
Every day is a gift. Why do you think they call it the present?]

I have been following the Flatlanders since the late '70's and here is a <---- copy of their first album which I can't find on the web at this point.

Good News: Yesterday I went all day without pain meds, aside from 2 Tylenol! Pain is way down and didn't bother me at all all night. We celebrated our 13th Anniversary last night with a Pizza (do you know how long it has been since I had Pizza?... I can't even remember) and candles, and gifts for my sweetie that I had some of my minions* find and deliver before Lizzie came home from work. For me, Lizzie bought the new Flatlanders CD... Also, I took it really easy all day: = napping most of the day while listening to KUT and waking some to pee and drink H2O.

Notes:
* See Dictionary.com "Minions"; def. # 3.

351) Post Transplant Clinic #2

March 27, 2009
Friday

NAMC Transplant Clinic: We get up here on time, check in, and meet Maxine the Transplant Clinic Nurse who was on leave last time we were up here. She does the pre-clinic meeting with BP (116/?), questions about the week since last time, etc. and asks us to wait outside for an empty treatment room. We wait about 5 - 10 minutes before Maxine calls us back in for the same room we were in last time. While waiting we see James the Transplant Coord. and he reports he has read the blog and enjoyed it. We also see Marlene in the hall and she reports on her trip to Florida and all the driving relatives back and forth wearing her out. She is originally Puerto Rican and has relatives who came to Florida for the wedding too.

Dr. Lewis comes in and asks me some questions about my week and gets me up on the table to check my incision, take out the staples (this hurts a little but after the first one, it seems to hurt less), wipe the incision down with that orange wipe (?), bandage it up, and help me to sit back up... his instructions: when the covering turns brownish and the corners curl up we can pull it off. Until then no water on it... when I shower I should tape cellophane over it, as before.

They also give us the following information:

• My creatinine is still right at 1.3!
• He wants to change my meds; taking off 1 Myfortic (anti-rection) and explains that I have a "peculiar" reaction where there remains a high amount in my system and a low amount is metabolized... it should be a high amount being metabolized and a low amount left in the system. So, he is lowering the dosage for now.
• While taking out the staples he noted that the hard area under the incision is a hematoma that he thinks will eventually be absorbed into my system.
• My calcium is elevated due to my overactive parathyroid and we need to watch it over the next few labs. It is probably due to having taken Sensipar to try to control my Phosphorous during dialysis. According to Dr. Lewis the parathroid gland is one of the few in the body that doesn't really reset itself on it's own. So, for now he is lowering my Myfortic partly due to the elevated calcium. We may have to go back to Sensipar, but he doesn't want to because Sensipar also hinders production in Mordechai the Miracle Kidney. I ask, "Does this mean I should take milk out of my diet?" and he replies, "Nope. You can't control this through diet at all.", and Lizzie and I smile at each other cause that would take Cheerios and Banana Milkshakes out of my diet.
• Dr. Lewis concludes that he is changing my meds: taking my nighttime Neoral down to 125 (one big one little) at night, and lowering the Myfortic to 2, 2x per day.
• We shake hands and he is gone like a west Texas wind.

Bernadette comes in with the new Transplant Medication Sheet, typed up all nice and neat, for my Manual, asks if we have questions and we kinda want to visit but she is in a hurry cause they have several more patients to see. She quickly answers a few questions, and I think it is her who tells us the Color of Urine story: the clearer and yellower the pee the more it indicates I am hydrating enough. The darker (up to Amber) or cloudier the pee the more I need to drink liquids to make the pee lighter and yellower. She smiles and rushes off and we are done by 3:30!

Yet we still run into mega traffic on Mo Pac on the way south. How many of you Austinites know that Mo Pac is named after the Missouri Pacific Railroad? We stop by TNOYS and Liz runs up to get her check and my mail and Kim comes down with her to say "HI". Then we run a few errands and head back home and I am worn out and must take a nap.

Evening: I watch Kansas (Big 12) in a close game with Michigan State (Dad's alma mater) and have to root for Kansas... and right at the end the Spartans knock the Jaybirds out of the tourney. Oh well, another Big 12 team bites the dust. We still have Missouri and Oklahoma in it so there is still some teams to root for for me.

And, so it goes on a Friday in Post Transplant Land. Mordechai the Miracle Kidney says "hello to all" and he is glad to still be in a living body. ¡Hasta luego!

350) Post Plan and Lab Day

March 26, 2009
Thursday

Home: I think I have just about decided to write posts on the days I have labs, Dr.'s appointment days, and days when there are important things to document related to the Mordechai the Miracle Kidney. I just can't imagine writing up here everyday without this becoming a "fluff blog".

We went for Labs this morning and told the Front Desk person that we are here at 7 because it took us a half an hour wait on Monday and it is important for us to be in the lab at 7:30 so we can get home to take my meds by 8:00 am. The front desk person understood completely and said that if NAMC would get my orders faxed over before my lab appointment that would help the process, and she checked with her lists and the lab's fax machine and nothing is in from NAMC. Even without the orders she said she'll get me in for my registration just as soon as she can.

Her comment on "orders" reminded me that although I brought my wallet this time, I didn't take the orders out of my patient manual and bring them. ARGGGGGH! So I told Lizzie and she rolled her eyes and left me to watch her coffee cup and medical part of taxes while she zooms back to get the orders we have. A few minutes after Liz leaves our buddies, Rodney and Kelly come and it looks like we are on the same schedule again: they had lab Monday and have Clinic tomorrow, as we do. I tell them about my hassles with lab on Monday, and they nod in an understanding way... and Rodney went in to the Registrar before they call me in.

Before Liz returns, they call me in for registration and I answer the hundred questions again and this time it seems to go faster and I think the registrar is actually taking some data from the last registration and it all goes quicker.

When I get done I am waiting for Liz and she arrives a few minutes later, gives me the orders, which I take back to the registrar, she makes a copy, and says I can go directly to Express Lab, where I wait for about 5 minutes before Peggy calls me in for 1 sticking and 4 test tubes of the red stuff. No urine needed although I use the bathroom to pee and measure it so I can document correctly back at home. We actually get home by 8 and I take my morning meds on time. Whew.

Liz leaves for work and I document and read emails and begin this post.

Yesterday: Of note:

1. Merriessa made us the best non-tomato sauce lasagna that we ate on Tuesday nite and I ate for lunch yesterday. It was delish!
2. My first work for TNOYS... working on a list of things for Theresa to discuss in her meeting with the head of PEI... to finish today.
3. My first private practice work at home: Renee came here for supervision and it reminded me of the days I used to do home supervision with Ananda. We are on again for next Wednesday.
4. I felt good all day... which is pretty much the norm now... some pain around my incision at times by only about a 3 on a 10 point scale.
5. I worry about eating too much celebratory food (as opposed to completely "heart healthy"), and I worry about eating some sugar (right now it is jelly bellies... was peanut brittle...) and still waiting for Roseanna up at NAMC to respond to my email asking for a few of the lancets and holders so I can check my BG while "on" sugar, cause all the data they got was sans-sugar.

Today Cheryl may come by in the afternoon and take me to run some errands, since I cannot drive for 3 more weeks.

Later: "My Cheryl" comes over bringing the gift of gifts~~~ two boxes of graham crackers and a lovely persona card. Oh yeah; and the new CD, Willie and The Wheel. Have you all seen the packaging on this one? It's over the top! Cheryl is the BEST EVER! Just bring gifts and maybe you too can be Best Ever... just kidding, sending light and prayers and healing power is quite enough you know.

So Cheryl and I drive off into the drizzly Austin drizzle, first to my money machine, and then to pick up my old boots (resoled), and then to Office Depot to get Avery hole reinforcers to reinfore the holes in the pages of my Patient Manual cause I am using some of them so much they've already begun to rip out. Can't have that! We converse and have basically a grand time and it is really nice to go for a ride. Now I understand how the dog feels when she gets to go... looking all over and being excited to see the world. Me too.

Back at home Cheryl moves on to other activities and I reinforce my notebook and read all the many surprises inside the liner of Willie and the Wheel... dedicated to the memory of record producer, Jerry Wexler. After Shayna comes home and Liz leaves for the annual Reception and dinner for the UT Social Work benefactors and student scholarship recipients, I begin to watch March Madness and within a few minutes I fall asleep. Shayna is reading out on the porch in the diminishing sun and I just drift off, only to awaken once to pee. When Liz gets home I wake up and pretty soon realize... "I DIDN'T TAKE MY MEDS AT 8!!!"

"Shoot!" is the nice way to say what I cried out when I realized what I'd done. (At least I couldn't chalk this one up to ADD!) We immediately take the Meds (at 10:15) and call the 'on call' Post Transplant Coordinator for support. We did right. Later we hear from Bernadette that you "always back up by 1/2 hour the next time you take the meds." So, tomorrow at 9:45 instead of 8.

So it goes... this tale of my foibles and fumbles; joys in poise; and adjustments for successes.

Notes: I am making a point to mention all the mistakes and mis-steps here for all of you who are anticipating a transplant and those who have just had one... as a forewarning of what are the potholes you may hit on your own journey. I am not posting them to make my self feel BAD or STUPID and it is certainly not an easy thing to blog about.

349) Of Gaffes & Grub

March 23, 2009
Monday

Home: I recommend not missing any lab appointments because it becomes a level 3 procedural faux pas... ratcheting things up to the "Generalized Peter Principle" ("anything that works will be used in progressively more challenging applications until it fails.") Actually I may be over-stating the case of the events that occurred on Saturday and Monday, but let me list them and you be the judge:

1. Jack & Liz miss their 7:30 am Saturday Lab appointment at S. Austin Hospital (OUR FAULT CLEARLY)
2. As we were told, Liz called the Transplant Team because we missed the appointment: leaving a message for Bernadette and Kim (on call) and was told by the operator that they wouldn't call anyone unless it is an emergency. We waited around for a call back and figured it must not be that big a deal... and we predicted we'd get a call bright and early Monday morning.
3. Bernadette calls this morning and talks to Liz and tells her they should have called us back Saturday and if this happens in the future, we should call THEM back in 30 minutes and bug them. Also, that our appointment was supposed to be for Friday, but later changed to Saturday at our clinic meeting. She says to go over there right now and she'll FAX the orders, but we should also take the order we have just in case.
4. We rushed over and found out we had to register again at the hospital. We ask, "Will this happen every time, twice a week?" ...and the registrar says "Oh yes that is the procedure". We shared with her that the last time we were told we only had to register once, and this registrar just smiled and shook her head. Also, the last registrar registered us in about 10 minutes, since the Lab is being paid out of Liz's insurance. This registrar asked a ton more questions, saying they were part of the Medicare requirements. We replied that the lab was covered under the insurance, and she replied, "doesn't matter, we have to get all of this info every time. Sorry." So, instead of 10 minutes this whole process took about 30 minutes...
5. ... which put us 15 minutes past my meds time at 8:00 a.m. Liz reminded me I HAVE to get blood work B4 I take the meds anyway, so today I'll have to be late. My brain is going nuts by this time.... "I MUST TAKE MEDS NOW! MUST NOT BE LATE! ARGGGGGH" it is yelling inside my head, not improving my disposition. Liz makes apologies for my 61- year-old-couldn't-care-less what people think of my grouchiness.
6. We rush over to the Express Lab and Peggy is there and she is so nice it helps me chill out a little. Takes all the blood needed and wishes me a good day. "Do you need a urine sample?" "Not this time." "OH. Well, can I have one of those little pee bottles... I have to go and need to know... how much I pee for my data entry." And of course, keeping with today's comedy of errors, the little bottle doesn't have milliliters marked on it so I have to take the sample home with me... you can guess the rest.
   
7. We rush home where I gobble graham crackers crazily and pop my meds at 9:00 am... an hour late (is that reportable to Bernadette?) and we figure that means we take tonight's at 9, right? The I do my BP and Temp late....

So, what a start to the day! Haven't I said this before. Oh yeah... on Saturday!

2:00 PM: I receive and email back from Bernadette and she says: 1) Take meds tonight at 8:30 pm, and 2) She has emailed the Supervisor in registration to see what the problem is.

Switching Gears: About my new diet... since coming home I have tried to stick around the edges of a Heart Healthy Diet So, for the time being I am celebrating by eating small portions of all the foods I have missed while being on dialysis: as follows,

Jack's Famous Spaghetti Sauce~~~~~Cheerios with Bananas~~~~~Guacamole & Chips
Pistachio Nuts~~~~~~~~~~~~~~~~~~~~Raisin Bran~~~~~~~~~~~~~~~Oranges
Red Potatoes~~~~~~~~~~~~~~~~~~~~~Baked Potatoes~~~~~~~~~~~Enchiladas
Frijoles & Boracho Beans~~~~~~~~~~Nuts of Any Sort~~~~~~~~~~~Quesadillas
Grilled Cheese & Chile Sandwich~~~Nachos~~~~~~~~~~~~~~~~~~~Tomatoes
Whole Grain Rye Bread~~~~~~~~~~~~Milk~~~~~~~~~~~~~~~~~~~~~~Broccoli

From the perspective of a Dialysis Person, this list is like the Devil's Curse... and yet now, just one week PT (post transplant) all those little Devil guys on my shoulder like in the cartoon have become angel guys. And the angel guys whispering "No, No, No, Musn't Touch!!" have changed shoulders and their tune... now they say "Remember your heart... don't overdo it." I like this message much better, cause the first one is always the voice of my mother... Ycch. It is really an amazing thing, brain wise. I almost feel guilty eating what I want, after those years of forgoing what I want.

To those of you readers out there who are still on dialysis and on the 'waiting list', just think about how it will be when the renal diet tethers are cut? Imagine how you will run around like a kid in a candy store... and just imagine how you will enjoy those foods you remember. Yes, they do taste even BETTER than you recall! You will be so happy! And yet... you will have new dietary requirements which you might not agree with either. For me, the new "No No's" are as follows:

< 1.1 C coffee a day~~~~~Limit red meat~~~~~~~~~~~~No chocolate
Cut Sweets drastically~~~~2-3 Egg Yolks per week~~~~Limit fats severely
Low fat sour cream~~~~~~~Low fat cream cheese~~~~~One cup of coffee!

Here's a little cheer I wrote to celebrate my dietary changes:

No more watching phos-phor-ous
no more "No potass-i-um"
milkshakes, nuts, and na-chos
yummy, yum, yum, yum, yum

And so it goes on a Monday... Lizzie back to work, and Shayna back to school, and Jak's Home Alone!

Note: Call from Bernadette to Liz at night. Bernadette reports that today's Labs looked like last week's... and that is GOOD!

348) We Forget LAB!

March 20, 2009
Saturday

Home: DAMN! We are sitting around... Shayna watching cartoons, me listening to NPR, and Lizzie talking to her mom... and all of a sudden she yells out..."Shoot!!!" and continues, to her mother, "We forgot Labs this morning at 7!!!". So she get off the Phone with mom and calls the Lab... they're closed now. She calls Bernadette and leaves a message about our plight. She calls the Transplant Center and they say they will let the Coordinator 'on call' know.

WE FORGOT totally. This close, post-transplant, I'm supposed to get Lab work drawn twice a week to keep close track of how the innards are doing in there.

We sit and look at each other. Liz feels bad and I feel worse... or... I feel bad and Liz feels worse... we don't know which which is which (ala Butch Hancock). We admit to ourselves that these days are so crowded with all the household duties, Shayna's activities on Spring Break, and new post-transplant procedures that we didn't write down this appointment anywhere where we were immediately aware of it. I usually write these things in my Time Design and Liz usually makes a note in her calendar... but she doesn't check her calendar first thing on a SATURDAY morning... and I did check my calendar... where it wasn't written, but I hadn't. I blame myself for having fuzzy whacky brain.

And, it is really too late cause I'm supposed to get the blood drawn BEFORE I take my morning meds at 8:00. So we've left messages all over and I guess if it is really important we can set something up for Monday morning.

What a start of the day. Shayna is at PEAKS as a Junior Staff, helping Big Kim today and spending the night, so she isn't around for the Drama of missing Labs.

The rest of the day goes okay. The Transplant Coordinators never call back so we guess that means they'll try to pull me in for Lab work on Monday. Afternoon is full of naps and March Madness... couple really close games... exciting. My dad calls to check up on me. And Larry is a first visitor to the home after returning from NAMC.

Margo brings us Mexican food from Flores and it is deliciosa! We three watch the Longhorns play much better than expected against the Blue Devils... It is close up until about a minute left and my brain kept saying: "Theres no way they can win! Could they win? Nah .... They could WIN! I can't believe we're still in this game. Duke's gonna win.... could we win?", through the last half of the second half. I am delightedly surprised and proud of our Longhorns for their showing against Duke.

After the game 48 Hours immediately sucks Margo in with the show's opening scene and so we watched the whole show... and she left after that. It was fun having a guest over even though I made her wash her hands before hugging me.

Everyday becomes more like normal and I feel better and better. Namaste

347) Day of Gratitude

March 19, 2009
Thursday

Home: It's becoming a regular day... which is difficult to post about, since I don't really want a fluff blog.

Its a regular day
what can I say
the dog thinks I hate her
just cause I can't play with her
she can't lick my face
what a disgrace
and when she pounces on my incision
I yell like a banshee
"NO...BAD Dog! Get out of my vision"
and she skulks away
confusion in her dog brain
what can I say
Its a new regular new day
<}o{>

Most of the day I spend writing thank you notes to all those who sent flowers, hugs, plants, services, cakes, light, candy, energy, a radio, spirited discussion and guidance, and as I do the blessings keep coming --> meaning more gratitude must be sent out... it's a cycle that we love right now... it makes us feel good.

Oh yeah: and Bernadette the PTC called and said Dr. Lewis said it is okay to use Neo-Synephrine for my bloody noses (HHT) AND stop the baby aspirin! One more med off the list... alright! And to finish off a perfect day, UT beat Wisconsin and moves on in the tourney, probably to meet Duke next. La vida es bueno!

Note: Pictures have now been added to Posts #338 through #342. Enjoy!

346) Post Transplant Clinic

March 18, 2009
Wednesday

Morning: I'm up at 7:15 to weigh, pee, BP, and BG, and eat graham crackers before 8:00, when I must take my meds. I am totally on time this time. HOORAY for the Jakster! Then I read my email from both accounts, & Facebook.

It is time for a nap... so I lay down on the couch and snooze from 9 to 11:30. Very deep sleep except for waking up to pee every hour (this morning).

I have to get up and get ready to go to Transplant Clinic for a 2 o'clock appointment. In the waiting room we sit across from Rodney and Kelly. He got the first of the fabulous four kidneys while we were at NAMC and I got the last one. He reports that Dr. Lewis took our his staples today and it feels great. These folks are from S. Austin too, so we all imagine we'll be seeing each other on down the road.

We meet Janie the Registrar, who we immediately find is another one of "us" and we click and I refer her to Hats.com when she mentions liking fedoras but can't find one for her small head. She has a daughter who works for DARS but not in state office. When they grew up she said "find a career you love and one that makes the world a better place". A great sending off for when the birds leave the nest.

Janie takes us over to meet Marlene the LVN with the smartly painted nails, getting ready to go to Florida tomorrow to a friend's wedding. She is very sweet and gentle and asks us a bunch of questions about how I am "right now" and takes my BP (124/70), temp. (99) and gets us ready to see Bernadette, the Post Transplant Coordinator. This place runs like the swiss railroad. We move along and Bernadette talks to us in the treatment room. She has our printed-up new meds sheet and two more appointments: for Labs on Saturday and another Clinic appt next Friday. She has me hold out my hands, palms forward, and notices a slight tremor in my left hand. She asks about breathing, pain level, problems, back pain, and has me describe the pain and level it on a self-anchored scale. Then she answers a few of our questions, as follows: First I ask about if the Nuerol change has to do with increased Creatinine and she says "No. It has to do with the 3 dosage is too high for me which, which doesn't effect my creatine level"

1. How do you get that ugly tape mark off? Alcohol wipes!
2. What about my weeping sutures? Ask Dr. Lewis
3. Should we was our fruit with fruit wash? Nope!
4. Should we have our house sanitized? Nope! However, we should wipe down our counters completely BEFORE food prep.
5. I'm peeing more than drinking! Don't worry about it now. Your still getting puff weight off. That 2000 and 500 stuff is for "down the road".

When she looks at my charting she gets confused about how I have documented some of my fluid intake / outgo and tells me to do it however I want as long as the TOTALs are entered at the daily total spaces at the end of the day.

Dr. Lewis comes in and after some more brief questioning and looking in my mouth, he says, "Jump up on the bed, young man", where he listens to my lungs and heart, asks about my breathing, pain level, etc. He tells me my Creatinine is at 1.4 last labs and I reminded him that before that it was at 1.3 and he shakes his head and says they're virtually the same; a change of one tenth could be time of day, or even a machine thing. "Don't worry about it."

He had me lay back and checked my incision and prodded around down there... changed my dressing and said I don't have to keep it dressed when it is not weeping. Ah... a Zen Koan! My question becomes one of "...if the wound is dressed how will I know it is still weeping, Master?" These kinds of Koans take us, in our meditation to a place where the truth reveals itself, unobstructed by oppositions in our little brains; so that, like creativity, the insight will arise naturally in me. I can hardly wait for this new insight.

I remind Dr. Lewis about signing a script for those little blood sugar strips and he says I don't need to check my BG anymore as far as he is concerned. WOW! Lizzie and look at each other with little married people grins, and I say "Great! One thing to take off the schedule every day" and then Dr. Lewis smiles. We're done for today and he'll see me again next Friday. Of course we are getting outa there right at rush hour but the traffic isn't too bad cause it is Spring Break from The University. Right after we arrive home, Bernadette calls to say Dr. Lewis is changing some more of the meds and she and Liz work that out.

We get home about 5:45 pm. What a nice day! Another day another mile.

345) In Gratitude to El Milagro Dialysis Center

March 17, 2009
Tuesday

Morning: I am getting even faster with my moring regimen of peeing, weighing, checking blood glucose, before our first lab appointment at 7:00 am over at S. Austin Med Center... where we check in and wait about 2 minutes b4 Brianna calls us in the enter us into their system. Then it is no time at all to walk around the corner to the Lab where Peggy is waiting for us in the Express Lab, where we wait for about 3 minutes until she takes my blood and pee and we're outa there very efficiently. Peggy says transplant people get express service cause they don't want us hanging around waiting with all the sick people you find in hospitals... makes sense to me. At home I am eating some graham crackers to put something in my stomach before..., taking Meds @ 8:00 am, and lastly, documenting the night and morning tasks in my Patient's Manual.

One thing about blogging every day, which I'm not used to, is keeping notes all thru the day... so today I concentrating on just the important stuff that occurs to keep this from becoming one more boring blog!

So some of the things of note today include getting busy thanking El Milagro Staff and Patients for all their care and support and true friendship over the last three years. Yeah: you know it was only three years there; from April, 2006 thru March, 2009. Not too long in the annals of patients in life-alysis... yet I will always remember the experience and the devoted people who have taken on working there for a career. They are truly dedicated to keeping people alive and on the planet and there is no way we could ever really thank them for their commitment. So I am thinking, aside from the Cookie Surprise on St. Pat's Day? Hum... well I could dedicate Mordichai's middle name to them... YES... from now on the "Miracle" in Mordichai the Miracle Kidney is in honor of El Milagro (the Miracle in Spanish)! And I can draw a picture of Mordichai and put some things for patients to remember (like Bernadette's advice that patients on the waiting list learn all they can about 'transplant' B4 they get their "call"). Of note, my neighbor Marie's mom was treated at El Milagro and she fondly remembers Herman the Nurse and James the Nurse. Her brother is now in dialysis at Herman the Adminstrator's S. Austin Dialysis Center. Small world, huh?

(<---) So, I spend some time making the pictured poster for them, while Lizzie makes the dialysis-friendly green snicker-doodles for staff and patients.

Today I am dealing with my precious bodily fluid on an average of every 28 minutes (between 8:10 & 1:50) on the outgo and 600 ml on the intake side)... ah yes... my precious bodily fluids...

Liz goes out to buy some more supplies for a cleaner house; now that we have to have a CLEAN environment beyond any of our abilities we must count on paper towels, anti-bacterial soaps, new dish drainer and paper towel holders for all the bathrooms. One good thing, we can claim these as medical expenses.

Liz nicened up the cookie tray with green tissue paper, filled it with the green cookies and took them and the poster over to El Milagro where she met with Susan the Administrator, Rosie the Tech, and Ann the Nurse to put the cookies out and hang up the poster. She reports that they all miss me as much as I miss them.

At 7:00 Bernadette calls to check in and tell Liz I can take one less Neural (3-1=2). She also clarifies the procedures for tomorrow's "clinic". I am delighted about taking less meds already: my brain hallucinates that I must be getting better if I can take less meds... right? Correcto mi hypothesizo.

Somehow don't have time to pay bills in all this day...tomorrow it is a HIGH priority!
We end the day by watching HELP, which Liz hasn't seen in decades, I haven't seen in years, and Shayna hasn't seen in weeks. Just another day at the salt mines. As Billy Pilgrim would say, "So it goes."

344) The World According to P.

March 16, 2009
Monday

Morning: This morning we get finished with the morning regimen at 9:30! We are getting better at this, of course, we started at 8. Liz left to do a few errands for me. Came back and then later went up to UT to take care of some of her business. John got up and we ate lunch... blah blah.

The Rest of the Story is The Story of P.: Eat; P; rest: P; email; P; email; drink H20; P; Send Liz on some errands for me; P; Gmail; P; Facebook; P; drink H2O; P; Blog Comments; P; check vitals; P; Eval Call from Linda @ NAMC; P; hard boil egg; P; Photos Uploaded and 6 Edited; P; Photos put on #337; P; Fix Tuna-salad Sandwiches on RHY; P; Eat; P; Edit More Photos; P; Nap; P; Look at old photographs; P; Edit #338... based on John's Clearer Brain; P; Watch John Play Mario on our Wii; P; Call from Bernadette the PTC (Post Transplant Coord.); P; John leaves for College Station; P; Talk briefly to Marie the Neighbor whose Mother was @ El Milagro and has two brothers in dialysis... one at S. Austin where Herman is Admin. now. Marie loved Herman and James at El Milagro...; P; Doze on Heating Pad... Ahhhhhh...; P; Liz home and we discuss Bernadette's call and Liz calls Bernadette; P; Liz off to buy more supplies; P; Meds at 8; P; etc. etc. etc.... And we finally eat dinner at 9:30. BTW: We miss you Paul Harvey!

That's the way day two goes...

Note: This entry is noted in Bill Peckham's Reports, this time edited by Miriam Lippel Blum. She says, " This is my first stab at updating the blogs. It's an entire education unto itself of how people live, what they worry about, what they consider important and how they survive. A truly inspirational journey."... and then goes on to do a great job of hitting the basic topic of every update on 92 blogs since the last Report!

343) First Day @ HOME

March 15, 2009
Sunday

Morning: Slept well and happy to be able to touch each other in our own bed! I was up to pee probably 5 times but more comfortable going back to sleep in my own bed... getting up finally at 6:50 am for my new morning regimen:

1. Pee
2. Weigh
3. BP
4. Blood Glucose (BG)
5. Graham crackers & H2O
6. 7 meds
7. Pain pill as needed
8. and today only: the last two meds from home that we forgot to integrate into the pill box last night... the first thing we were supposed to do... sorry Bernadette. We immediately add those to the pill box and end this whole process at about 10:30)

Now it is time to fix breakfast! Breakfast is good at home! We read the paper... I drink my ONE CUP of coffee... re-arrange our Patient Manual and add a few sections... Lizzie investigates "post kidney transplant" on the web and finds some interesting stuff... she copies information on a heart healthy diet for me - at my weight and height... and we wait the hour after breakfast to do another blood glucose prick.

DAMN: Missed the hour by about two hours before remembering! Next time I eat I set the kitchen timer to remind me to re-prick.

Afternoon Already: So, the day has been our World Transplant Day. Mordechai the Miracle Kidney is fitting in nicely it seems... with only a few droplets of weep... probably loss of his 25 year old attached body... I hallucinate. I nap and pee, nap and pee, watch TV and pee, blog and pee, walk up and down stairs more times than I thought I could... and pee. So now I am counting the P's and will inform you, dear reader, just as soon as enough data comes in to show a trend...

More to come... Evidently not today!

Notes: Change is the only thing that is constant. Upon inviting Mordechai the Miracle Kidney into my precious body the color of this blog must also change. We choose the color GREEN, not cause we're ready for St. Pat's Day... but because green is the color of healing. When we meditate on healing, we visualize the diseased part glowing greeen. Also the color of Hatch Green Chiles and Avocados, foods of the Gods in their respective cultures. So I am going back and changing the PUCCOON to GREEN. I have the green light (behind the green door)

342) Saturday: Discharge Day?

March 14, 2009
Saturday

NAMC: Had a better night... less back pain, but more painful catheter. Every once in awhile the pain is so great It makes me want to jump and dance. Not being able to do that just yet, I am constrained to sitting up, standing up, swaying to the music and then moving to the bathroom to bet those bowels to let loose. By the thurd time I produce my first bowel movement at 3:30 am...(Hahn thought my problem from yesterday was my bowels pressing on the back of my my pee system and causing the pain. As Hahn said yesterday, even though it hurts it will be better after I have a bowel movement. Increasing number of farts says I am getting there and every time they listen to my bowels they hear them rumbling, which is good.) This is a relief and I am now without that level of dance pain.

This morning at 6 Hahn comes in and tells me about how she is gonna pull my catheter. Yikes. "Is it gonna hurt?" I inquire like a 12 year old. She arches her eyebrows and nods: "It will a little..." And then she explains as she prepares to yank it out, "first I am going to deflate the balloon..." she attaches a syringe (Pulling a Catheter) to one of the Y ports at the end of the catheter and pulls back and I feel an immediate decrease of tension in there. Then, quickly and slickly she gently pulls the thing out! Zip Zap I am free to pee... with very little pain... actually no real pain to speak of... so I won't. What a relief. Hahn smiles that I feel good.

<--- Liz Working]

Liz gets some time in on work stuff. Now we are awaiting the Doctor to give us the Green Light!

Hahn and Lanette (the Tech) move on and the nurses for today are Barb the Nurse and Sabrina the Tech. These two are a hoot. Barb is like this Army Nurse, with a directive ordering facade and Sabrina walks around singing phrases of old country western songs as she does her work. Sabrina is from Oklahoma... an Okie country lovin' Gal. Barb has interesting persona... a personal and funny person, without getting personal... if you know what I mean.

Bernadette today come to say there is a good chance I might be discharged today. The doc has to see me to make that determination. Bernadette recalls that when they first started the transplant center all the new nurses were freaked out about how excited the transplant team gets over PEE... "Wow! Look how much you peed!" It is because peeing and creatinine are the two things that indicate positive progress of the transplant and so are very exciting. For example, the first two days AT (after transplant) I peed out about 8 pounds... which is a very good amount. Now the $N staff has caught the excitement about peeing and only the new nurses are weird about it. Bernadette has to talk to me one last time to set up my meds for the first week and she asks Liz to clean the table top with disinfectant in preparation for the pill box filling. I ask her what is the difference between T-cells and White cells and she explains that some mature white cells (called lymphocytes) become specialize T-cells... and they are like soldiers who search out and destroy the targeted invaders, like My Mordechai. She also says that today is the day for Liz to shoot over to the pharmacy to pick up my supply of meds for us to box later today.

Things that today is full of:

• A little later Barb and I go for a longer walk... around three pods and back to my room.
• Rosanna the Diabetes Woman comes by bringing more info on diabetes for us to put in our Info Library and wish us the best.
• Barb pulls off the leads on my chest to unhook the monitor in the Nurse's Station.
• Barb pulls my IV and pulls the leads into my neck where they have been giving my all my IV meds, etc.
• Since pulling the catheter I have pooped one more time and da peeing eet is easy.

At around the crack of noon, young Dr. Sankar (from Madras, India). This doc is very pleasing to talk to. He removes my dressing and says I don't need one so the incision can breathe more I can take a shower without covering the incision, and that it looks very good. He listens to my lungs and heart, asks a few questions about pain and says you can leave today after talking to Bernadette. I inquired about Dr. Sankar's being in Austin and he replied that he came specifically to study under Dr. Lewis because he is such a good doc and because there aren't that many docs out there anymore that have the experience of Lewis (Dr. Lewis has over 800 transplants under his belt). Most of the transplant docs that have his experience have retired so Sankar finds it very fortunate that Lewis took him on. I thanked Dr. Sankar for his exam and discharge and he smiled and said it was nice meeting us.

I immediately take a shower and it feels so good...

Bernadette calls several times saying she is on her highest priority task right now is to find recipients for two kidneys and it is taking lots of phone time. She promises to get to us just as soon as she can. We are getting antsy. Liz reads most of our handout literature. Finally she starts packing, packing, packing... well... actually Liz is doing all the packing and I am consulting with her... not really a good thing.
[Liz reviewing literature --->

Finally Bernadette gets up here at 8:30 and we load up the pill box and she educates us a little more and continues to apologize and we are so happy to go home that we just tell her it is fine and we like her lots enough to forgive her anything she might do. She finishes by reminding us of our lab and clinic appointments next week.

Hahn and Lanette are back on duty by now and they help us thru the maze... Hahn pushing me and Liz off to get the car, and Lanette being something of a porter with a cart of our stuff. We load up say a heart felt goodbye and drive off into the night, me hoping we can make it home before I have to pee again, and Liz just happy to being going home. After all, Home is where the Heart is.

341) Friday the Thirteenth ~ Yikes

March 13, 2009
Friday

NAMC: Our special visitor on Friday is Rabbi Baker from our congregation Kol Halev, who comes around noon.  He brings some spiritual readings and we talk about the story of my transplant and recuperation. We have great philosophical discussions about the ethics of buying and selling kidneys; how the practice in some third world countries of selling organs to transplant to rich Americans... Is it fair for the wealthy to avoid the national list and harvest organs from the third world countries that sometimes even have better transplant hospitals than the USA? Is it the right of the third world person to do what they want, or should there be laws and regulations that circumvent a person's free will in this case? We discussed how it is similar to ongoing questions over adoption practices and how they are handled differently by all the countries that have children for Americans to adopt... as well as the cultural ethics of bringing these little folks to the USA. Kerry then turns to Liz and inquires whether she has told me the important item he asked her to....Liz shrinks and can't remember and he turns to me and tells me about this great deal right now for getting satellite dish for March Madness, where I can see each and every game. Then we talk Longhorn Basketball, other teams and who is likely to do good, etc. for the rest of his visit.

In reviewing my notes, I can't for the life of me remember what else happens on Friday! Lizzie & I disagree about some of these happenings, and she's the one who insists the Rabbi's visit was on Friday, not Thursday. We figure out that I talked to Stuart on Friday, and that I also talked to Cari, and Mariessa called me later after Lizzie called her to tell her our news. We're trying to catch up with all the important people in our lives. We decide that all the rest of the visitors and medical stuff are on the right days and decide to leave things as they are.

This is, after all Friday the 13th!

I do know that I was in the hospital, getting stronger, walking two times a day, further each time, and all my vitals (except maybe the blood glucose) were fine... so I think we should just "let it be". I have been watching my winter hat sitting on TV and think, what a fine picture that would make: "Hat on TV". Since I am writing this after the fact from notes but still in the present tense, as if it is actually occurring right NOW... all I can say, dear reader, is, "Read on" and all I can say to myself is, ONWARD THRU THE FOG"...

340) World Kidney Day

March 12, 2009
Thursday

NAMC: Up at 5:30 am and blood sugar elevated (see Notes). Lizzie and I are talking mid morning and she comments on my increased ability to sound like a real person in my conversation and I reply, "Yes. Today it is more Jack and less Whack" . We're discussing whether I can stay by myself for awhile while Liz checks in at work... I think I can keep my eye on things while she is gone, plus Rabbi Kerry is coming to visit and maybe it'll be while Liz goes to work. New team is Eric the Big Guy Nurse and Martha the Tech... Eric says he cannot understand the night shift and their ways. Stuart called and we conversed for sometime about sickness ("I'm still afraid, Jack, about being out there and catching something"), and diet; Stuart is on a special diet he and Cari have found... can't remember the name, and we talked briefly about my working at Kerrville Folk Festival this year. I told him it didn't look good at this point... mostly cause of being around people who may be sick or because of the general bacterial conditions out at the ranch.

Later on Cheryl came out to give Liz hugs and brought me cheery get-well balloons. Cheryl comments frequently on this blog as "your Cheryl" and she is one of Liz's five "girlfriends" since they all were in the Graduate School of Social Work at UT many years ago.

Rosanna the Diabetics Nurse comes to talk all about diabetes and since my blood sugar is on the high side she brought me a finger pricker as a gift! It is a cute little Bayer Contour Blood Glucose Monitoring System in its own pouch holding all the supplies. She shows me how to use it and tells me the story of diabetes, diet, etc. Very Nice Woman. She suggests I check my blood glucose on an un-scheduled agenda, whenever... just to get an idea of how it fluctuates. When Rosanna leaves.  We have a little afternoon quiet time, and then . . .

Grace and Lawrence come to visit. Good news: I love these people! Bad news: we get to laughing so hard that I have to hold my incision to keep from splitting it open. Then we laugh about that and I say, "Keep it up... laughing is good medicine..." They leave just before we all plan for an Italian food fiesta (since I haven't made my famous [actually my mom's] for over 10 years now cause with the deteriorating kidney I couldn't eat tomato sauce... potassium you know...) and Gracie makes a killer Lasagna. We can hardly wait but there needs to be some miles between here and there... Gracie is going to LA and I think Lawrence had some plans tambien.

Later in the afternoon my dad calls and he is reading the blog and very interested in everything thats happening up here.
<--- Talking to Dad on the phone]

Night: Had an okay kidney incision / kidney functioning night... but my penis and scrotum is giving me some pain... the scrotum is really swollen and it is burning right before I pee. Really no fun at all! Liz says I shouldn't include this in the blog so you can just imagine that there were several different hypotheses about what was going on and in the end Hahn was proud that she was the nurse who hit the nail on the head... it was what she thought it was and I was able to cure myself with her strategy. I am forever indebted to Hahn the Vietnamese Nurse.

Notes: Vitals for the day ~ BP 146/76; Oxy=97; Blood Sugar=200; Creatinine 1.4; Farts = 4 (a good thing pre-bowel movement).

For another guy's transplant report from a few years ago, see Nathan's PKD Blog's report on his transplant.

339) My First Walk with Mordechai

March 11, 2009
Wednesday

NAMC: I wake up at about 8:30, barely conscious that they have already awakened me for vitals (and weighing... my first time out of bed!) and morning meds. Liz wakes up about the same time and we get ready for a new day. The new team is Nurse Luvi and Tech Nena (both from the Phillapines) and Nena is married to the assisting nurse during my transplant. Luvi explains that I can take pain pills 3x a day if necessary.

I am still a little Whacky and this day is confusing as to its agenda and what happened when. I have to walk today and count my farts! Counting farts in a preclude to my first bowel movement. Bernadette is here for teaching and gives us tons of info that we must read in the Patient Manual and then take the open book test over.

Sometime late in the morning Luvi takes me for my first walk, about 45 minutes after I take a pain pill... and the walk is up and down my side of the hall... probably not more than about 100 ft. I am winded afterwards but it feels good to walk.

<-- Resting after one of my walks] About lunch time I take another longer walk with Nena and we walk completely around out module (there's three of these modules on 4N). Afterwards I am out of breathe and yet I feel better than the last walk and realize the truth in what the staff all says: "The more you walk the better you feel". After I rest up a bit I do my Inspirato and get my score up to 2000.

Kim my Boss comes to visit and after the transplant story she says, "We need to name that kidney" and within a few minutes I come up with "Mordechai" who is Esther's <---Mordechai on right] cousin & co-savior of Jewish people in the Purim story, and then Liz quickly adds "the Miracle Kidney"! So the new addition's name is Mordechai the Miracle Kidney. Then we talk about business for about 20 minutes: the options; the ways to get my job done; the health of the office; i.e., how everyone always works while sick rather than stay home and recoup; etc.

Cheryl calls and reports she was trying to visit, but has been stuck in traffic so long she has to turn around to get to her next stop ... it has been RAINING since we came to the hospital.

Dr. Lewis stops in to change my dressing and Liz takes a quick pic of my staples before he dresses it up again. [My staples --->

Dinner is brought to Liz by Aunt Diane and Aaron and I eat quesadillas, beans, and brocoli... things I haven't eaten much of at all for 3 and a half years! We watch LOST and Tugboat Annie. Luvi hugs Liz when she leaves, telling Eric the Nurse that Liz is very helpful.

Notes: Creatinine 3.6; BP 135/60; two walks!