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.