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!

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.