374) In Which I Meet a Real Survivor

July 7, 2009
Wednesday

Laredo: I am here in Laredo today to facilitate a Youth Leadership Conference that Mario has organized. I arrive at the facility about 30 minutes early and there is a youth there already... asking if he can help me unload and set up. He carries the heaviest of my supplies up the stairs to the second floor of the building and goes about the process of assisting me in any way he can. He tells me he is a college student at the community college in Laredo, and although he is a little older than the rest of the youth he is anxious to be involved with the group and excited about this day of leadership activities designed to pull the group together and to practice some ways of communicating with their community about substance abuse and how to move in the direction of a drug free community.

As other young people arrive and partake of the generous snacks that Mario and adult staff have provided, this young man, Luis, goes around talking to some of them, ever aware of any other way he can help. After the first round of ice-breaking activities and setting the day's goals for the conference, Luis approaches me and reports that he is so happy to be here and participate in this event because it is still new to him to be up and around and able to do these kinds of things.

He continues that three years ago he had a heart transplant! I exclaim, "Wow! I had a kidney transplant last March!" We share our scars and I hear his story... he was born with only one ventrical and lived the first 15 years or so with very limited activity... bed or wheel chair bound with home schooling, etc. until he got the heart transplant and recovery in San Antonio. I am astounded! Here is this young guy who is enjoying... actually LIVING life to the fullest [he reports now riding horses and roping calves ~ which the doner girl did before passing on] and going to school and working on his dad's ranch, and being fully aware of his new abilities to experience reality from a new stand! It is awe-inspiring and adds some humbleness to my situation. This kid had a HEART TRANSPLANT and has a new life to live!

I am just an old guy with some extended years... but, here we have a person who has a full and long life to live because of our modern technology. Later we compare diet, meds (he takes something like 37 a day... all through the day... AND remembers them faithfully!) to my measly eleven every 12 hours; morning and night.

This trip to Laredo, and meeting my young friend, Luis and his peers becomes another of those meaningful experiences that we find in living that help us to remember "all the blessings already are". Thanks to all the youth leaders that were present that day; and especially to Luis. And thanks to Mario and SCAN for again inviting me down to work with them.

373) July Meds and Clinic

July 7, 2009
Wednesday

Transplant Clinic: Liz and I come in for my clinic visit and Dr. Lewis is right on time. My weight and BP are up slightly and for the first time since coming to these clinic meetings, Maxine, the intake nurse gives me a copy of my lab results, saying "...you wanted to see them I thought". These reports are pretty cool I think. They have a full review of everything that they find with columns of the category, result, flag (if needed), and reference. So, for example, the first line under BASIC has:

Sodium 140 ___ 136-145 meg/L (and so on down to...)
Chloride 108 _H_ 98-107 meg/L (etc..)

So, this gives me some things to highlight while we are waiting between the medical folks and I have 7 H's or L's to ask Dr. Lewis about. After my questions and his answers Lewis does a perfunctory exam and continues to indicate I am doing well, from his perspective.

I tell him I've been having some water retention in my feet and I think it might be from the heat these past few weeks... which is unseasonably hot for the past few weeks. Dr. Lewis doesn't think it’s the heat. He asks how much salt I am eating and I reply, "according to the labs I seem okay..." So, he asks me to "watch" my salt intake for a while. I agree.

Now, from my perspective, this is a constructivist way to give a sort of Ericksonian command or "suggestion" in which you suggest a behavior without ordering it. When orders are given, like, "Stop eating salt" or "Don't eat so much salt", some people's defenses or hesitancies have a difficult time following the directive, either consciously or unconsciously.

So, when we say things like "watch", we circumvent most of the person's defenses and they think of it more like a challenge, rather than a command. "Watch for red pickup trucks" helps you to notice them when they appear in your vision, and you do so because there is no pressure to do it: you just remember to do it.

I probably shall remember my self attending to salt and how much of it I am ingesting.

So, the visit is entertaining and I am going to watch my salt intake and notice the foods that I eat with lots of salt in them.

Bernadette comes in and gives me a new med sheet, noting that I am going to go back to taking the Dapsome because they should have had me on it for 6 months instead of 6 weeks. All other meds are remaining the same.

We are all happy and we begin to set some dates for August labs and clinic.

372) July 4th Weekend Rept

July 7, 2009
Tuesday

The Weekend Report: It was a busy and friend-filled fourth weekend, with my birthday dinner date to Fino's with Friends... celebrating mine and Ken's birthdays and a belated Cathe birthday too. Then on to the fourth and a fish fry at Lake LBJ with more friends, and Sunday brunch with in laws paying us in migas, pancakes, and eggs florentine for caring for their hamster for a week. As a transplant recipient I can only report that it is so nice to eat almost anything I want now!

Sunday John and Katie visited and Katie stayed for steak and my traditional birthday pineapple upside down cake.

Monday back to work and today I should get my new talking pocket watch in the mail. Of course, since last mention of med time slippage, I've been doing great on remembering the 8 am and 8 pm pill times. Wouldn't you know?

So the USA is 233 years old and I am 120 days post transplant.

Later: An email from Shauny that I want to pass along to you all... with her permission.

"Hi! I know you know I have the volunteer spirit. I wanted to pass this along because when you click on the link to find volunteer opportunities it gives you so many choices. I found two new ways to help today. I will start taking inner-city kids on nature outings for Sierra Club, and I will start being a community outreach volunteer for greater Houston's Collaboration for Children. Volunteering gives me peace of mind. It takes my mind off of my own worries. It makes me grateful. It makes me feel I'm doing more than what is required. I feel I'm giving part of myself and my experiences so that my life has a purpose. These feeling sustain me. I hope you can find something for yourself here. And that it will enrich your life."

Love, Shauny

371) DAD Report

July 1, 2009
Wednesday

Lunch time: I'm in a thought provoking workshop with Leslie Moore on "parenting", utilizing all the great theorists' ideas in a developmental view of the challenges of parenting... with a number of friends from STAR agencies from Round Rock, Austin, and San Antonio. At lunch Emily from LifeWorks asks about my kidney adventure and reports she was an assistant social worker in a Frensius dialysis center in SA and so I share parts of my story with a knowing person... which is somewhat unusual... since most people don't know so much about renal disease, dialysis, and transplants. I tell her about this blog.

Evening: Dad report via Tracy... my dad transferred today from the hospital to the Towers' assisted living center, Parklane West, where he can stay up to 30 days with specialized care. Tracy reports that she wants him back up in his 17th floor roost by the weekend, but the doctors aren't sure at this point. She also reports that he is doing much better but still doesn't want visitors or calls from anyone. I am glad to hear that he is doing better.

370) TIME for a change & memory boosting too

June 30, 2009
Tuesday

Home: Today was lab day and I went in for labs at 10 instead of early, like usual... the reason: inadvertently took my meds at 10:50 pm last night... not at the usual 8:00 pm. I have had this slipping med time thing going in the last week or so. While out of town I forgot once or twice and by the time I remembered I was facilitating a training or driving cross country or some such other lame excuse. My getting back to life is impacting my meds regimen!

So, today I went in for labs late and then emailed Bernadette with the reason and my adjustments, since I know that they want the labs at the end of a 12-hour med schedule. Bernadette emailed me back with the following:

"Thanks for letting me know. I will remind Dr. Lewis when he looks at the labs. Your level will be off, since you had a longer time the night before, so the level dropped lower and, therefore will be lower in am as well.

Again I want to suggest that you carry an alarm with you at all times. Taking the meds 12 hours apart is crucial for the long survival of the kidney."

Lizzie was adament this morning that I GET AN ALARM... and then, this afternoon, when I had some free time at the office I ordered one from Amazon. To add to my lame excuseness, I can no longer wear my watch on my left wrist because of my fistula. I can't imagine wearing a watch on my right hand... it just wouldn't be right. So I went online and found a novel idea in a pocket watch;

a talking watch for old people! --->

Maybe I can program it to yell at me in my Uncle's voice " TAKE YOUR DAMN MEDS!!" in that way he used to yell and in the way I set up the computer to yell at Johnny when he was online long years ago. "Get off the damn computer" my Mac used to say... at the very least it has voices and three alarm settings so I should be able to have my pocket buzz or yell or ring out at 8 and 8 continually. That would be a relief.

So, that's my story and I'm sticking to it! Thanks Bernadette and Liz for getting on my butt about this whole thing. I must remember to take meds tonight at 9:30, in the morning at 9:00, tomorrow night at 8:30 ~~~ and then I'll be back on track... a "clean machine" (ala Dale) running on time.

7:15 pm: Bernadette just called with a lab results report:

1. Creatinine is .09
2. Cholesterol is 133
3. Cyclosporine is a little low; "which makes sense since it was low last night and remained low today" with the labs. She talked to Dr. Lewis about it and he says stay on course and we'll check again on July14th.

I told Bernadette I ordered a talking pocket watch to remind me to take my meds every 12 hours and she was delighted. I thanked her for calling with the report.

All remains well. Namaste Bernadette.

369) Weekly Report 3

June 21, 2009
Sunday

Weekly update: While preparing for writing this blog this morning, I nourish the yard [our watering days are Tuesday & Sunday] and to tell the truth, I haven't really been watering at all yet this year. And, the yellowing of the front yard outside of the shade canopy of our oaks plus the last week's 100 + temperatures finally got to me.

Yesterday Liz and I worked on transplanting some of the plants that have outgrown their pots and decided to put our new Carolina jessamine in some large pots rather than planting them down the hill where we really want them. It is just to damn hot to keep them watered until the heat wave subsides... and that may be in September the way this weather is turning out. Our plan is to grown this vine up the back gate archway and keep it trimmed so it doesn't completely overgrow the whole fence. I like the idea of seeing out into the creek bed. A special thanks to my transplanted gardener and FB friend, Gene Bozarth, for encouraging in the direction of getting back into my landscaping and lawn work... since he has been doing his gardening post-transplant for some time now. I did, however, with Lizzie's directive, wear my medcare vinyl gloves.

Also, this morning, while busying myself around, waiting for each setting of the sprinklers, I happened across another kidney blog by a guy who is a Certified Coach and NLP Trainer, ', 'Coach Richie', and read his most recent post, "Leave the Past in the Past" a good read with good ideas about how PKDers, and I would add, dialysis patients too, can leave their past experiences of pain, discouragement, and dis-ability in the past, and live in the present... describing his taking "many years of understanding, and retraining my mind to change the equation to “doctor” equals “healing!”[...rather than "pain"]

I now have good rapport with all my doctors, and I like to think that they don’t cringe when they know I’m coming in to see them.

Negative medical events that happened in the PAST to you or family members happened…in the PAST!

They don’t equate what will happen to you now or in the future."

...Yet, it might not have to take many years.. we basically can all reframe past negative experiences from our 'younger and less experienced' self's remembered responses to negative events. After all, didn't most of us think of shots as BAD as kids, and now, as adults, we accept that they are good for us. Coach Richie also describes "re-imprinting" which, as a coach, he can probably guide his folks through competently...

Re-imprinting is a conversational hypnosis activity in which the guide takes the person back through their earlier negative imprints, which are powerfully negative or positive experiences that are the building blocks of our current personality. So, when we are anchored into the strengths and resources we have as adults today, and taken back with those resources to a time before each imprinted experience, we can re-experience that event with our present self's resources. For many of these experiences, our present self has all the resources it needs to relive the past experience without having the same negative reaction that was imprinted. In fact, the event is re-imprinted... which, when lived through again, up to the present, makes the necessary adjustments along the way such that our notions of our history are changed. Very cool process actually...

Friday: I was in Wharton for two consulting (TA) gigs [cultural competency & play therapy] at the Texana STAR Program. I met a woman who has had kidney problems throughout her family and we had a nice conversation about kidneys and Bar Mitzvahs, which overflowed to the whole group at lunch and several folks expressed interest in this blog. There were questions about my time on dialysis, taking anti-rejection meds* forever, and healing from transplant. Several folks were surprised about my being up and traveling just 3 months post transplant... another counselor reported about her two friends with transplants; one doing fine and one not doing fine.

I gave them my google label "jack's kidney"...and, according to my FEEDJIT, one of them spent almost an hour perusing it yesterday.

Zoomed back up to Austin and got home about 7 pm... just in time to take Shayna and Liz to

Shabbat Services: ...Kerry Baker's last service as Rabbi of Kol Halev... about 100 or so people were there, including old founding members, new members, and friends of the congregations, like Margo. This was a heartfelt time, remembering the 12 years with Rabbi as our spiritual leader... and I really can't imagine what Kol Halev will be like without him. Some of our friends are leaving the congregation and looking into other congregations, but Liz wants us to stay on, at least through this year of Shayna's Bat Mitzvah, since it is still our Congregation from her perspective; and the only congregation Shayna has ever known. In his last talk with us, Kerry asked the congregation to think about two passages out of Deuteronomy... one thgat describes all of the children of Israel as holy, no matter what... and one later in the Chapter that describes the process of being holy as Jews, suggesting to many of the congregation that it is not enough to simply BE Jewish... one must also ACT as a Jew, including the inner evolution of becoming Jewish... seeing the process of spiritual growth. My own thoughts were that the author is like a salesman, highlighting the product (Jewishness for Life) and then what one must do to possess this Jewishness. Thankfully, there were some Jewish scholars (at least to my way of thinking) at the service, so there was quite a bit of discussion about the meanings of these passages and what they bring to the congregation today... on Kerry's last service. Toward the end of the service, Shayna said my dad's name during the Mi Sheberakh, one of the central Jewish prayers for those who are ill or recovering from illness... and I was proud she thought of that.

In ending, Kerry brought his family up front and expressed his sadness about moving on, as well as his excitement about new beginnings... one for him and one for us who remain... challenging the congregation to re-build Kol Halev in a way that reflects what the congregation wants and needs to continue. The closing song was led by Amy the Cantorial Soloist, and perhaps written by her... and had some memorable verses, as follows:

"Bar mitzvahs and weddings
And 3am calls
The good times and bad times
You've been there for all
We've loved Rebbe's tisches
And 45 minute d'vars
Torah study on Tuesday
And the sermon on Star Wars...


You led the discussions
Without any notes
You know all of Austin
And that's not a joke
We'll miss you, for sure
Especially
Group Aliyot
And Ask Da Rebbe"

There was a special sweet oneg afterward and lots of tears and hugging. Reminds me again... Everything changes... change is the only constant...

DAD Report: As of Friday, my dad is still in the hospital in SA and the only ongoing news of his situation comes from Michael, via Carol... who calls Mike for reports (she is now the "communicator" ala Satir... the role my Mom played before she died... part of the reason communications between dad, Mike, and me have suffered). Added to our dad data bank is the info that dad is still in the hospital because they're 1) continuing to treat the edema in his legs and, according to Mike: 2) he also has had a bad reaction to some meds for depression... and, he should be stable and out any day now. My info is via Liz, via Carol, via Michael... and, I think more and more that our conversation may have been convoluted via the mis-medications... although I cannot throw out the idea completely that people's beliefs drive their sensitivities...

As all things seem to have some sort of serendipity... and I had been drive-time pondering my dad's condition and how to stay in touch while respecting his need for privacy. Then, on Friday, in Wharton, in an activity I gave the counselors to draw a map of "who you are and where you came from", there were three maps and their corresponding stories of histories of serious divisions between the generations of participant's families; either due to marriage outside the faith or the ethnic group... and these stories informed my own one [divorce outside the belief system], so I listened carefully for ideas and insight. One person, whose map was one of perpetual connectedness through all the generations of her "family" brought her to comment how difficult it is for her to work with families where there is a breaking of the ties... of where the parent wants to throw the child away... and the rest of us nodded in relation to that disclosure, understanding too well that client's distress. Although I don't really believe in the concept of "transference" I must admit its fleeting image crossed my mind right then.

The earlier part of the week is just a blur now... so, remember folks... "all the blessings already are..."

Notes:
* Related to the question of current meds: right now I am taking:

• Neoral ~ 1 - 100 mg @ 8 am and 8 pm
• Neoral ~ 1 - 25 mg @ 8 am and 8 pm
• Myfortic ~ 2 - 180 mg @ 8 am and 8 pm
• Valcyte ~ 1 - 450 mg. every other day
• Norvasc ~ 1/2 - 10 mg @ 8 am
• Synthroid ~ 1 - .25 mg @ 8 am
• Multivitamin ~ 1 @ 8 am
• Paroxetine ~ 1 - 20 mg @ 8 am
• Crestor ~ 1 - 10 mg @ 8 pm
• Sensipar ~ 1 - 30 mg @ 8 am

368: TW Three

June 14, 2009
Sunday

That Was The Week That Was... remember that show from years ago? Since it seems I'm moving into a schedule of blogging weekly... this week feels like a jumble of events that expanded through out the week, like a string of pearls, each with their own little lesson, or memory, or challenge for me.

Monday found me driving to La Marque... partway between Houston and Galveston... to do a training for the STAR folks down there... I walked into the church where the training was being hosted and within minutes ran into one of my students from UT, and that was a joy. She and her husband had settled into their new post IKE lives very favorably, with Ken taking over a coffee house and Holly switching employers and doing groups in schools. She rushes off to eat lunch and go to work, and I end up spending the lunch hour meeting with their Executive Director and explaining and supporting and processing his feelings about the difficulties with the state funding source. For me, in my state of return to my "retirement job" and getting back out to work with these devoted agencies, it is depressing to hear from all these people these days. It makes me quite sad the direction of the crisis intervention and runaway prevention program I have been supporting and 'believing in' for over twenty years now. The developments and changes in this basic community-based program are becoming the albatross hanging heavily on my neck... and bringing me down at this time when I am trying to use the passion for training as a healing force for my kidney. Actually the work with the staff went well and was energizing... I could tell throughout my drive home afterward. And, I did stop at Rick's in Ellenger for a pound of brisket to match with Liz's potato salad for dinner. Yum.

Tuesday was blood work and paperwork...
Wednesday I go for a doctor's appointment and see Bernadette and Doc Lewis... he comes in and says "Hi" and follows with "Boy, that kidney is an M1 Abrams Tank of a kidney isn't it?" and I respond with an "Uh huh..." trying to picture what he is describing... "a tank as a metaphor for a kidney.... BIG... Powerful... a blast the Hell outa ANYTHING kidney! YEAH!..." He twinkles and I smile. It is doing good. He continues to say things are as good as they could be. Since my 3 month anniversary (June 9th) is past, I now am in phase where there is a very low chance of "acute rejection" from now on. He continues talking and gives me a cursory physical by looking in my mouth, feeling my neck, pushing on my abdomen and thats about it.

I tell him about getting our final bill of 173 K and my wondering... "If this was an easy transplant with nothing really going wrong, etcetera, could we say that the price was about what an easy transplant would cost?" Dr. Lewis didn't want to go there; saying that he doesn't understand billing, insurance companies, or anything about how these things are valued. He continued that no kidney transplant is easy or simple... it is a major surgery and you cannot really equate a surgery where nothing goes wrong, the time spent, and the lack of problems with the price. ( I get that it is not like taking your car in, where you expect to pay more if it is complicated and they have to do more than you expected.) So that mystery remains... maybe I should ask the insurance carriers....

Doctor Lewis concludes that all is going really well; there are no meds changes for now... and he'll see me again towards the end of July. Bernadette comes in a little later with the poop sheet with no meds changes and two appointments for blood work and my next doctor's appointment.

Liz and I get outa there early and I go back to work for awhile...

Friday: Up early and drive to Dallas for two Technical Assistance meetings with Promise House; one about resolving conflicts in the shelter and one about confidentiality parameters with youth... the highlight being that this group thought that Texas follows the Tarasoff ruling in California: them finding out that Texas is NOT a Tarasoff state! Afterward I had a talk with the supervisor about the kinds of difficulties that arise when shelters and counseling centers try to collaborate with youth and families.

Driving home was a quick trip hopping from NPR All Things Considered on KERA to ATC on Waco's KWBU to Austin's KUT and arriving home about 8. My mother in law is staying with us this weekend for my nephew's birthday and we visited before I crashed out, have worked from 6 to 8 and driven about 600 miles...

Saturday: My dad calls mid-afternoon to say he is in the hospital in SA, and has been since last Wednesday... thought I should know... and adamant that I NOT come down to see him. He reports that it is CHF (cardiac heart failure), which sounds pretty serious to me and he adds that it comes from his edema in the legs and that he intends to get out on Monday to go for a skin cancer treatment at another medical facility. My reaction is to question him about coming down, which disintegrates into an argument about our topsyturvy relationship and ends with me saying that I hope he feels better and at least no one slams the phone down. I immediately call Carol to inform her and she calls Tracy and finds out that they (Mike & Tracy) intend to go talk to the doctors tonight) and that my dad has demanded they not come see him either... so, then Carol calls him and he tells her not to come too. So, everyone is ordered not to come and I feel minisculey better... and wish I had just gathered info from him and let all the rest go. So it goes in the Dad Department.

The evening gives me an opportunity to get beyond the afternoon as the family celebrates little David's 7th... adults consuming their drinks of choice, snacking on guacamole, and then eating grass fed cow steaks, broiled squash, and chocolate b-day cake while the kids run crazy all over the house. Lizzie and I ham it up for the photographer, Mitt. Great time til I get tired and catch a ride home early with Larry & Diane. Then the worries about dad return til I fall asleep... so it goes in the Jack Department.

Sunday: Father's Day and I think about my dad as Lizzie prepares breakfast of strawberry and blueberry crepes. MIL Joan, Katie, Shayna, and Liz all wish me a happy father's day and Johnny calls and all is well at home.

367) Flag Day 2009

June 14, 2009
Sunday

...been meaning to post for at least five days now... and the more I get back into my pre-dialysis life, the more I seem to live life rather than write it. So, a brief catchup for all you who care or follow this as a survivor's log of a transplant recipient. It's Sunday and Liz and Shayna are up at Camp Kachina, checking Shayna and the Awesome Foursome into a cabin for a week of blistering heat and camp activities in the scrubbiest camp I've ever seen... that's another story... So, quick run through of a busy week.

Tuesday: Lab work... went smoothly and I am getting used to having to be checked in to the hospital every time... going thru the signatures, warnings, assignments of insurance, wrist banding, etc., and then visiting with Ms. Peggy as she pokes me and I give a sample of my precious bodily fluids and set them in a box hole in the wall. There is something very weird about that whole process. I pee and Peggy is on the other side of the flimsy wall with a rectangular hole cut through it... only two aluminum doors separating us... I can hear her and she me... I could just stand up from the lab chair and pee right there for all the privacy the whole thing affords. It's kinda like being married to Peggy... like I say... weird.

Pee talk and pee observation and pee collecting is such an important part of any kidney difficulties so folks ought to get used to it or forget participating in kidney treatments of any kind. Makes me remember adolescence and my friend, Anita, who has disappeared from my circle, and maybe from existence... although I hope not. We used to talk pee plenty back in the old days.

Tuesday evening Bernadette calls with her now usual "all things excellent" calls... and, without even any confusing questions. She reports my creatinine is 1.2, which is good.


Wednesday I leave the house at 6 am and spend the next couple hours listening to Morning Edition as I drive my rental Pontiac G6 out into the hill country chasing the dark to Fredricksburg on auto-pilot, drinking my coffee and munching on a few breakfast tacos. I decide to turn left and head down the hill to K-ville and then punch it on I-10 west where the speed limit is now 80. I am driving to Alpine to do a workshop for the Texas Council of Family Violence's Criminal Justice System Response Training back thru the hill country and then over the Edward's Plateau to the place where you can take a sharp left and drive right down thru a wide valley, south and then right up through the foothills to Alpine... a drive that reminds me of my west Texas homeland, and thinking about two simultaneous topics; Craig Childs' Secret Knowledge of Water and a new way to introduce my crisis intervention workshop to my audience. I am envisioning an expansion of a continuum of crises along a curve [like the landscapes out here that seem to stretch from side to side rather than vertically] from common situational and developmental crises [the vertical view], based on the many labels people use... a landscape of phobias, PSTD's, suppressions, dissociations, denials, psychoses, and catatonias. Then I plan to bring the participants back
again to the idea that all crises can be worked from the process of identifying the lethality, finding the known and forgotten coping strategies and assisting the person to their coping before jumping to the work of resolution. These ideas are formulating in my brain as memories of Childs' descriptions of Indians mapping the secret water holes throughout the desert... and simmer in my visualized Permian Basin of surrounding mountains, and the flatland between them zoom by my G6. I drive down thru that wide valley to Alpine, watching my gas gauge go down too, thru empty to the flashing notice... "Get Gas Now!" and that takes my focus as I cruise into town.

Two hours of workshop, visiting with new friends, and I drive out of there, feeling like it went okay, given it is my first outing post Mordechai's entrance into my life... and decide to drive on to Marfa and out that way... through Marathon, past the Glass Mountains --->
and back up to the speed ribbon called I-10 East... running from the sun to the darkness of HWY 290 and then through the hill country, watching for deer and drunks... making it home by 11:30 pm. What a drive.

Wednesday: Back to the budding crisis at work... budget losses and all the staff anxiety and adjustments we must make to continue our work with our network members, and preparing for an upcoming Board meeting on Friday.

I, however, continue to count my lucky stars, taking care of myself so I can take care of others.

By Saturday Lizzie and I are ready for a date ---> going out to Thomas & Gails' Sycamore Creek venue to hear Jonathan Byrd, where we see friends (Marty, Katie, & Mitch) and bask in the breeze of a warmish evening, enjoying the music and being together in the hills northwest of Dripping Springs... the highlight being running into Joy and connecting on FB later. So, we are all really fortunate to be on the planet! As LMF said, "Life is full and beautiful. Celebrate life with your friends everyday. After they are no longer it is too late."

366) Another Lab Call from Bernadette

June 5, 2009
Friday

Lab Call: Bernadette called me at work this afternoon to check on my pill-taking behavior. She asked if I was taking my myfortic like I am supposed to. Since I am at work, she has to describe the pill (the greenish grey one) and I / we changed the dosage to 2 in the morning and 1 at night, from 2 and 2. I remember some changes and thought we were changing the Nueral from 1 and 2 to 1 and 1... and I can feel-see the fuzz (VK synthesis) spreading thru my brain, like dry ice smoke spreading on a stage behind the ballet. I pull myself together and vocalize.... ummm... tell her I could answer better if I had my med schedule and box of pills right in front of me to look at... and we decide I'll call her when I get home in an hour or so.

And then I ask, "So, what's the problem?"... to which she answers that my myfortic level is high... she further explains the lab results on myfortic come a few days after the results she calls me about the night of my lab work (like last post). And, in those results my level of myfortic is 6.3!

Hmmmm. I am searching the corners of my brain for a chart of levels of myfortic. Hmmm... do I find that chart? Well, of course not, having no recolection of myfortic even having levels. "So, what does that mean?", I enquire, in a worried fashion. Bernadette gives me an answer that goes in one ear and out the other because I am listening for words like "delerium", "incontenance", or "impotence"! Evidently it is not 'that' important... and she says she is also calling Dr. Lewis for his thoughts.

I email myself at home to remind me to call her back.

Later: I get home to a sparklingly clean house ~~ our new house cleaner, Adrian (another story) has been here and I reminds me of entering my mom's house when I was a kid, or like going to a hotel that is emaculate and decorated just like my house (how comforting). I like it a lot.

I have a snack and then call Bernadette back.

"Hi. I have my current Transplant Medication Sheet and my pill box right in front of me and am... I am taking 2 myfortics in the morning and one in the evening." She says "right" and I go on: "and on little stinky cap in the morning and one at night..." ..."Right". "So, is that what I'm posed to do?" And I add that when I compare that to my open boxes on my pill box I can verify that I filled it correctly, and tell her that.

Bernadette verifies that it sounds like I am doing it right and adds that Dr. Lewis said to just carry on and we'll check the levels again next Tuesday and see what's what. I reply that that doesn't make me feel that much better and she says something about sometimes these things just happen and I shouldn't worry about it but make sure I double check as I fill the box each time... and I am doing good... and to have a good weekend. After our call I go back and check again going paper by box by paper until I am sure each compartment in the pill box is right. According to the internet (Scott & White), "Symptoms of a mycophenolic acid overdose may include nausea, vomiting, diarrhea, and unusual bleeding or bruising." and I haven't had any of that recently. WHEW!

"Am I paranoid?" I wonder as I turn on the News and decide what to have for dinner.

Liz & Shayna are down for the last weekend of KFF which I still can't go to because of the DIRT and drifting microbes from people who forgo their wellness to bask in the music... in other words... come to the ranch sick with colds, flu, and God knows what else. I keep up through peoples' Facebook notes and pics and the pics Theresa, Pat, and Susie send me via email. Thanks Folks! And of course the phone calls from Lizzie and Shayna.

From Last Weekend: At right is a picture of Shayna & Calla serving dinner on the KFF Volunteer Staff Kitchen Krew ~~~~~~>
This is the first year Shayna is officially on the krew.

365) Positive Feedback from Bernadette

May 26, 2009
Tuesday

Lab Call: Tonite Bernadette called me at work, at home, and then, later again, at home... missing me the first few times. She called to say my labs were perfect! ...couldn't be any better. No changes in meds! My creatinine is 1.0 and I am a "clean machine" to quote my old buddy Dale from EP. Yahooooo

I shared with Bernadette that I like a professional that goes outa her way to give out good new as well as the bad.... and she replied (or I hallucinated that she replied) something to the effect that is her favorite type of news to report.

"Namaste Bernadette!"

364) Memorial Day Weekend

May 25, 2009
Monday

Transplant Report: Last Tuesday, the 26th was lab day and it went off without a hitch. The regimen seems kinda boring to me right now: 5 Labs and an Appointment... what can I say about that? Maybe at some point in this post I'll pontificate about staying out of the dirt and how difficult that is.

Work Report: I did a full 8-hour day at work on Tuesday, after Labs! First full day since returning to work on April 23 or there-abouts. Mostly I take my time in the morning and do my meds and charting regimen, slowly wake up and get to the office sometime between 9 and 10. I stay until I am tired, which has been longer and longer each week. Plus things are getting busy at the office so I am probably gonna be at almost full time this next week. Of note, Christina set us up with a TNOYS Facebook so you can now find us on Facebook by clicking Texas Network of Youth Services and you can become our "fan" and even send a contribution in these dour times. We have been working on submitting grant applications to solidify our place in the non-profit world of youth services.

The office has continued to do a great job of keeping the place antiseptic... with anti-bacterial soap and posters in the rest rooms about washing your hands as long as it takes to sing a verse of "Happy Birthday to You"; and bottles of hand sanitizer in every public space.

The Dirt on Gardening: I have been trying to locate all the specs on why I shouldn't garden for the first year or so, post transplant (<-- like Bernadette said). Not much came up in my Google search over the last hour or so. I did post a question on the NKF Listserve for transplantees. Basically, as I get it, there are all kinds of microbes, bird poop, animal poop, mold spores, and 'all kind of mean and nasty things' in the dirt and my propensity, at this point in my acceptance of Mordechai the Miracle Kidney it is still very tenuous in the infection / rejection department... and, therefore digging, potting, planting, and such are not appropriate hobbies for me. DRAT! I have that itch every weekend to get out there and do yard work. Bernadette suggests that if the little devil on my right shoulder makes me, I should wear double gloves (surgical under gardening) a mask, and mega sunscreen. Oh yeah... the sun is not my friend either.

So, yesterday, about the crack of noon, when Shayna rolled out, we got to work on the front yard's first edging and mowing and clipping and sweeping, it was Shayna the Yard Girl's edging and mowing debut, with Lizzie the Helper sweeping. I was relegated to some distance trimming (20" up from the business end of the loppers), and sharpening the cutting edges of the edger, lawnmower blades, and the loppers. This is Shayna's first time edging and mowing and it took her some time to learn edging. She stuck it out however, and did an adequate job. The mowing was easier for her once I showed her the tricks of electric lawn mowing and she did a good job with that!

This is also the first weekend of the Kerrville Folk Festival and WE are NOT there... too much Dirt and People for me to get in the middle of this year. Another DRAT. And, for the first time ever, some of our friends are sending phone pics and notes via Facebook and I can't figure out if that makes it worse or better! I love hearing from them and seeing their pics.... and, it reminds me and makes me miss being there. For example, my friend Andrea posted, "(I'm)... slightly surprised to find drama in Forest Lawn"... making me very curious... Forest Lawn is the staff campground, where there is supposed to be QUIET and no drama. Lizzie and Shayna are going the next two weekends, so I'll be home alone to work on projects, etc.

So, instead of sitting around moping all weekend, Steve and Mary Lou had their once-every-so-often Memorial Day Party & BBQ* and invited us, Kim, David & Little Emma, and several other families with kids. It has been raining off and on all weekend (traditionally the rainiest weekend of the year in Austin) and yet the skies cleared before the get-together) and I got to slather myself with sun screen! The food and company was good and we got home early too.

So, today is quiet and restful. Have a good Memorial Day!

Notes:
* Instead of uploading pics here, I am experimenting with a link to them on Shutterfly!

363) Two Months Post Transplant

May 16, 2009
Saturday

So, it's been awhile since I posted and it's been awhile since my last doctor's appointment and lab work. I am still adjusting to the regimen of a transplant person. Last Saturday, the 9th marked the 2 month anniversary of my transplant! There are specific stages of "healing" after a transplant that go something like ---> 1) first week; 2) first month; 3) first three months; 4) first 6 months; and, 5) first year... and you can claim an Anniversary after completion of each stage: at least I do since I think of anniversaries as holidays. So, even though it's only 2 months, to me it is an anniversary. On the 9th Shayna celebrated by beginning the her spring soccer tournament by winning 2 of the three games and tieing the third. Afterwards, Shayna and I go shopping for Mother's Day. I stay home from the games... still not wanting to be in crowds much. Other notes of note are detailed after my Transplant Report.

Post-Transplant Report:
My last lab day was scheduled for May 12th and it was after a 12 hour fast. So, lo and behold, on May11th I started fasting at 7 pm and then forgot my meds and didn't take them til 9:20 pm. This meds and fasting process is meant to conclude with blood work at 7 am... so I figured that at 7 am I'd still have until 9:20 for my meds level to be where they want it for the lab work (see Post # 354, April 4th) and I called Bernadette at about 8 am and she agreed and said that I should repeat the process again Tuesday nite and have labs Wednesday the 13th... the same day as my clinic appointment.

I fasted again on Tuesday, from 7 to 7 and made sure I took my meds at 8 pm sharp and then went for labs Wednesday morning at 7:30 for labs. Of course, that morning was 2 months since my last "sign in" at S. Austin Med Center, so I had to go thru the whole damn sign-in process again and that took 1/2 an hour... so Peggy took my blood about 8:00 instead of 7:30! "The best plans of men and mice often go awry"*

Post Transplant Clinic # 4:
Later in the afternoon I meet Liz at NAMC for clinic and there too, we have to go thru the whole half hour re-registration, making us late for the appointment at 2:00. Maxine is waiting for us half way down the hall and quickly ushers us in for Part 1 of the clinic, the taking of my weight (167 on their equipment - 162 @ home), temp, and BP (145/75). Then Maxine asks all the normal questions like pain?, nausiousness?, diahrea?, headaches?, pee color?, night sweats?, etc. Then she ushers us into the treatment room and Dr. Lewis comes in in about 2 minutes (unusual) and asks, "How are you doing Jack?" and I answer, "Pretty good." and then he goes thru many of the same questions and we discuss my recent groin pain when running and scrotum pain when they bounce. "Hmmm. Slip into a gown and I'll be right back." I do and he does... and he does a physical exam and concludes that all is well down there and I probably just over did it or lifted something too heavy... oh yeah, "Maybe it was moving the new stove?" I remember.

His report to me is that all is as good as it could be at this point for a person my age and size. "Am I small?" I query... "No; large" which surprises me... I never think of myself as 'large' except in my girth. He continues with the following report in some sort of order that Liz and I recap at Spider House later: "Creatinine 1.0; blood count is Good; Cholesterol okay... low; Bad Cholesterol little high but also good; meds all good ---> no changes this time; I am extending your Dapsone for another 6 weeks; you're doing great! So, I think we'll go for 5 weeks before I see you again; but I want you to have labs every week during that time."

My Report to Lewis includes 1) questions about sleeping more and he thinks it may be that I need more sleep or am pushing it too hard, or even possibly some post-transplant depression... he's not worried about it. 2) My question about getting back out 'on the road again' for a workshop in Alpine on June 15th, and dealing with hand-shaking, etc. He suggests I be careful to not pick my nose while shaking hands with people and head to the rest room afterward and wash up. Take some of my anti-bacterial wipes for doorknobs, etc. We conclude with my reporting a little about TNOYS probably losing a big grant and my putting in a letter of inquiry for a big grant. He asks about what it would fund and I briefly tell him it is a 3-year study for our network agencies that would look at best practices in ensuring fidelity of face-to-face practice to training. I like good docs (and I cannot lie)..., like Lewis, who show interest in their patients' lives outside of their medical needs, call them by name, and take the few extra minutes to have a 'relationship'. Research shows that building a relationship is an important common factor supporting positive outcomes (maybe in medicine too, according to Bill Moyers).

Then Dr. Lewis leaves and Bernadette enters and says, in response to Liz's question, that I no longer have to chart my pee! Yippee!... but she does want me to continue to chart fluid intake, and weight, temp. and BP in the mornings so we have a record in case we need it.
I discuss briefly with her my fluid intake going to Hell since going back to work and she can't understand why I can't just drink 2000 ml. while working. I reply that I get into some project and focus on it for hours without remembering to take a break for lunch or a drink. "Don't you get thirsty?" she wonders and I either think, or say, "Yes, but, I keep working until there is a good stopping place... like when my brain hits a dry spot :) or I get to a point where I need to sit back and think... and then I'll take a drink.... but, that only happens once or twice a day."

So, she says something like, "You just need to take 4 bottles of water to work and set them in front of you on your desk" and I reluctantly nod my head. She is right, of course. I do need to find a way to drink more H2O and get the intake up from about 1350 a day to the required 2000. She also adds that I can watch my pee (without measuring it) and when it gets too dark or cloudy stop for a good long drink. She gives us the new and updated Med sheet for my notebook, including the following new information: 1) Walgreens @ Brodie for the continued meds ; 2) Labs on 5/19, 5/26, 6/9, and 6/19 at 7:30 am at S. Austin Hosp EXPRESS Lab, and 3) Transplant Clinic on 6/17 at 1:20 pm - register at 12:50 pm.

All in all, I am quite happy with the clinic today... and Liz and I have a short date at Spider House with iced coffee and small talk.

Other News of Interest:
May 8 ~ Grandma Joan Comes to Town: Big weekend (David's birthday, Mom's Day, etc.) so Joan comes down from Dallas and we all celebrate by going to Fino's for dinner after work. Brother-in-law John baby sits the three young boys while the "adults" plus Shayna go out for a nice dinner at Fino's which for me was okay food for too much money. But, everyone liked it and four of the girls went directly to the ballet afterward. I went on home watched pro basketball.

May 10 ~ Mother's Day: Shayna gave her mom an African violet and we had a nice quiet morning before meeting the relations at Eastside Cafe for a wonderful brunch. We left the group early in order to get Shayna to the last two games of the Soccer tourney... and were only about 10 minutes late for the first game. I went home... and the Kick Kats won the first game easily and then played for the championship against the Starlettes again! I went over to the fields for the second half and watched the Kats score 4 points in the half, winning over the Starlettes 6 to 2! Once again the Kats are the champions of their league (U12)! This weekend (5/16) they are in Victoria and have won the first game in that tourney 5 to 0. According to Liz, Shayna is playing great: and while we are on the phone the Kats score two goals in the second half of their second game and are now ahead 4 to 0 in the game they are playing right now! Wish I could be there.

May 12 ~ Shayna's Induction to the National Junior Honor Society: On Tuesday evening Shayna was inducted into the NJHS, as was Liz, many years ago. There were tons of parents there and I tried to not get too close to anyone. My Pics were pretty blurry because they were taken from half way up the bleachers that were bouncing with applause... it was fun watching Shayna look proud and happy looking dressed up with a number of her Kick Kats team and at least one of the Awesome Foursome too. Note that in the second pic Shayna and the NJHS Officer right behind her have on the SAME dress! Shayna was okay with it and snickering, and the other girl was definitely NOT okay with it and didn't even shake Shayna's hand. They stayed far apart during the reception afterward. Lizzie and I laughed about the whole thing and a few of Shayna's friends mentioned it to her. The last pic is of Shayna and Jaimie, one of the Awesome Foursome, who figure strongly in a story Shayna won awards for and which the school had published!

May 14 ~ Shayna's Play Performed: Since Shayna's book was published, the school's theater group picked it as one of three to develop into a short play, that Shayna titled "I'm Sorry Jay" and then worked along with the director to select the actors, re-write the story into dialogue, and work with the theater group on all the aspects of the production. Liz went to see the play on May 14th although I had to work on high priority stuff at TNOYS. After the play, Shayna and the Director stayed on stage to answer students' questions about the production. It was very cool! (Pics of the production coming soon).

Back to Today, May 16th: These longer posts take time... I have to find a happy medium... today all is quiet around here... raining a lot with a comfortable 75 degree temperature allowing me to have all the windows up. I am missing lawn work (needs mowing badly) and all the flowers (especially the hibiscus, petunias, kolanches, roses, red yucca, and lantana) are blooming so it looks overgrown out there but quite colorful. The "depressed" state seems to have moved on and work is doing fairly well at keeping me busy and motivated. I am still very happy about being able to eat more like I like to eat and taking meds only twice a day instead of taking binders after every meal.

To my friends still on dialysis: envision getting your transplant so you can once again enjoy life without the phosphorous blues! Namaste my friends on Lifealysis.

Notes:
* Quote from Robert Burns retrieved online from Robert Burns Country.