380) PDK WALK FOR THE CURE

September 12, 2009
Saturday

Abiding Love Lutheran Church: The Austin Chapter of the PKD Foundation met last night to set up for today's walk, amidst drenching rains... deciding to put the walk signs and such out this morning. This morning we all met at 7 and decided to cancel the walking part, since many parts of our path were under water... to cancel the sumo wrestling and the jumping castle... and to stay indoors for the festivities and speechifying and such. Walk leaders, Candace, Randy, Kim, Dan, Butch and others kept their spirits up even though the walk was a wash... and we all made the best of the lousy weather, visiting, thanking folks who came anyway, explaining PKD, and remembering and honoring those family members lost to PKD. I got to wear the big kidney (pics to come later). Shayna and her team did a good job of participating in the "walk" (actually walking the route and returning soaked to the bone), and helping with the setup and take down. Some of the pics I took are shown here. A number of the "teams" that have made their own team shirts, supporting family members with PKD came, as usual in their matching t-shirts.
Cheryl who comments on this blog often came to visit with us and to see the info about PKD.
Today the "cemetery' was a wall installation with the names people lost to PKD (see # 378).
Two of the family teams t-shirts.

The Jonas Alvarez Band.

Even tho we were inside, looks like all had a good time. By the way, you can still donate to Shayna's Team Tikkun Olam til the end of October!

379) 6 Month Checkup with Dr. Lewis

September 2, 2009
Wednesday

NAMC: "This kidney is a monster!" Dr. Lewis says. He is standing over near the door in his sea green scrubs, studying my record's updates and then he turns and smiles and begins asking some of his usual questions: "How're ya feeling? Any nausea... diarrhea..." and such.

We have been here for awhile, with Maxine making small talk and taking my BP (125/68), temp, weight (184! --> I just ate lunch 30 minutes ago), etc. and she has left us to catch up before Doc comes in for my exam. My creatinine is 1.1, BTW.

Dr. Lewis asks questions and gives info: 1) my triglycerides are up and we discuss my self watching salt ("I'm eating less salt from chips, etc. but pistachio's and cheese may be the culprit...") so he asks that I continue to "watch" my salt intake and he decides to refer me for cardiac testing "... to be sure we protect my great health and that (monster) kidney..." he installed. And, 2) what about my swelling feet? ("That Dr. Poreddy says it is from the Norvasc and I should be on anther BP medicine... and I still think it is worse in the higher temperatures and better when it cools off...blah blah...")

Ah yes, Dr. Poreddy --> I must regress, stepping back thru time to August 10th... a Monday... bright and early... when I went to S. Austin Hospital to get a Stomach Emptying Test and a barium swallow.

The SET wasn't much to talk about. It is also called a gastic emptying test. They gave me a cup of oatmeal with an isotope in it and I ate it and waited awhile before laying on a long table with a moving x-ray machine that tracked the food as it digested and emptied out of the stomach... lasting about an hour. Pretty boring really.

Then I went to another room where they mixed up some Barium swallow potion and had several little cups with different consistencies of the potion. We waited until the doctor... a "Austin-type" guy about my age, with a plaid shirt ruddy complexion... looking like a hiker... came in and joked with me a bit and had me drink one of the potions while he and I watched this black blob flow thru my skeletal head, down the pipe running fairly parallel to my spinal column, through the body, kinda like one of those TV commercials of the innards of your drain with draino flowing through it. It was fascinating... and fortunately he had to do this three or four times and I got to watch each time. My skeletal head would go back, all white in the surface and greyish around the edges... my jaw opening and the ghostly larynex. It was similar to this pic, yet we got to see all the way down to my stomach. It was slurp, swallow, slide, black blop slipping down like the coloured oil in your lava lamp falling back down as it cools... until it settles into the stomach. This doc concluded there is no problem with my swallowng, and that made me happy.

So, by the date of my Poreddy appointment, he introduces himself and leans intently towards me looking directly into the depth of my eyes... as,if he is searching for something in there, or maybe he is just using his rapport-building skills and I am wondering if folks from India have a different idea of personal space (they do) and it seems as it he is leaning in almost too far, but I don't back up cause I'm curious how close he'll come before stopping. Anyway, he reports to me matter-of-factly: 1) I have "slow stomach emptying". I wait to hear more. There is no more. I coulda asked, "Can you tell me more?" and yet I just sat there staring into his eyes as he was staring into my eyes, thinking maybe I could get a reading on what this slow emptying was about.... when he finally continued, "you can take Prilosec and I'll give you a prescription, but don't fill it until you talk to Dr. Lewis. You are on a very complex regimen of medications, and he should see how this one will fit with the rest. If you can't take it for some reason, we'll do a endoscopy... have you ever had one of those before?"

"Well, yes, I have had one some years ago, when I had a very low blood count. Don't recall the date or the doc... but Dr. Moritz got the results and I thought it had to do with my HHT. Do you know what HHT is..." he nods and jumps up, saying let me get the report and walks out of the exam room. I'm thinking, "this should be good. I've never seen any doc be able to get an old report any time soon...." and I pull out my new book and start reading (Kurt Anderson's Reset). Poreddy pops back in within a minute or so, with a warm, stapled report of my gastrointestinal endoscopy from 2006. I am amazed and have new respect from this guy. He looks it over, and says, "Yes, they did find some little red spots in your stomach..." and I again am waiting for more.... not to come. He concludes, "Well, get some prilosec and fill this unless Dr. Lewis says not to..." And for some reason, I don't ask for clarification, or what he thinks, or anything. I thanked him, got up and left, just like that. How unusual of me. Maybe he had me hypnotized or something. I pondered this strange doctor's visit for all the drive back to work.

And now, back onto the forward escalator... stepping /gliding up and up... back to the Septermber 2 Floor: hosiery, kidney checks, Dr. Lewis, Bernadette coming up. I tell Dr. Lewis about my visit to Dr. Poreddy and we try to find the now lost prescription for the forgotten name med for my slowly emptying stomach... can't find it anywhere, yet we showed it to Maxine just 20 minutes ago... maybe she has it? Dr. Lewis calls for her and she says she returned it to us (not me...) and time stops for a sec... and then she says the name of the medication! We get back into time and she leaves behind a closing door, Dr. Lewis thinks and speaks: "Don't fill it. Too many drugs isn't good... and I'm taking you off two (valcyte & dapsone: the infection beaters) myself... take some prilosec if you want..." and I am delighted to drop two and not have to add another.

What about the Killer Swine Flu, I inquire, and his answer goes something like this: "You can get the vacine when it comes out."
Me: "Can I get it here? Are you guys gonna get us in a.s.a.p. so we are protected cause of our immunosuppresency?"
Lewis: "Get it if you want. I've been doing this (transplants, I suppose) for many many years and I don't get too worried about it. Transplanted people get the flu just like everyone else and we don't see a lot of them do poorly." Shrug. Okay. I think, well; I'll get one and maybe not worry so much about the whole thing. I do trust Lewis.

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September 4, 2009
Friday

Home: On September 10 it'll be 6 months post transplant! WOW. It has gone by fast. It has gone by slow. Mostly I am aware that I have been off dialysis for 1/2 year. That is a blessing. I have a "monster" 25 year old kidney cleaning all my toxic wastes and functioning beautifully... I have the awareness that each and every day is to be lived completely and fully in the present! I can be as happy as I can be and be as down as I can be and enjoy all my states for how they define this life we all live. Namaste.

I wonder when Mordechi the Miracle Kidney will turn 26. Now I can find out, because I believe at 6 months I am allowed to contact the family that donated their son or daughter's kidney to ME. WOW again. I think of Insoo's face and voice saying her "WOW" how did you manage that?"

So, one question now is, do I want to find out more about the person who left their 25 year old kidney, whom I have named Mordechi? For many months I thought excitedly about contacting that family to somehow inform them that the donation of their progeny's organ has saved a person such as me... is this about me or them? I'm thinking (hallucinating) there must be some sense that their loss of a child (which many consider the greatest loss) cannot even be dented by the story of someone who bought a few years based on their loss. Can I be happy or even somehow relieved by the thought of my child's organ living on in a stranger? Am I as blessed and happy about their loss and they are healed by the gift of life they have given?

In the realm of the "compassion" that Jack Kornfied writes about in A Path with Heart, we all are part of the great compassion and can realize that all pain is our pain and all healing is also our healing... do these folks I do not know see the world in these ways? And, do I want to find out it they even want to hear from me? I am not sure. I think I will discuss with my transplant social worker, David.

This is my first Friday off, since TNOYS in now closed on Fridays while we cut back expenses and try to get our financial feet back on the ground. We lost some staff, and all the rest of us are working less time until we get some money gigs going. It is weird, but nice, in a way. I'll use the time for chores, preparing for my UT class... again teaching SFBT as a 2nd year graduate course in the School of Social Work.

Life is Good. All the blessings already are.

378) Team Tikkun Olam

August 24, 2009 ~ Shayna's page name = http://www.pkdcure.org/shaynatikkunolam

August 16, 2009
Sunday

Home: The beginnings of Shayna's Team Tikkun Olam are installed on Austin's PKD Walk for the Cure website. She and I finished putting them up and then she was off to Hebrew and her Rabbi meeting. In Hebrew, Tikkum Olam means "helping to prefect the world" and it is part of Shayna's work towards her Bat Mitzvah, later this fall; her service project as she learns to be part of her community, and part of the reason Liz and I attended the Austin PKD Chapter meeting yesterday.

Austin's Chapter Walk Website

377) At a PKD Austin Chapter Meeting

August 15, 2009
Saturday

Austin Chapter PKD Foundation Meeting: Liz and I attended the August meeting today to be part of the planning for the September PKD Walk, which Shayna has taken on as her community project for her Bat Mitzvah community project. Shayna was on her way back from the coast so we represented her and volunteered her for working with working with the younger kids attending the walk with their parents. Liz has attended these chapter meetings in the past, and I am embarrassed to say that this was my first actual meeting, although I have participated in a number of the walks, raised money, and blogged about them for several years [Posts # 282, 164, & 55]. This year's walk will be in the same location as last year's, right near our neighborhood, at Arbor Trails.

The Chair graciously welcomed Liz when we arrived, and we told her (Francine) about my transplant and she hugged me and was happy for us. We found our seats and I introduced myself to Joan, a woman who'd received a transplant some years ago, and we immediately began discussing doctors, concluding with sharing the recommendations I have for Judith Betts because of her brilliance, caring and comfortable attitude toward patients, and responsiveness to her patients.

The meeting followed a detailed agenda, including updates on projects, a report from our PKD Foundation Rep., Laura, detailed planning for this year's walk with Candace leading the way, a short report on the National Conference from the new chair, Randy, and concluding remarks from the outgoing Francine. Towards the end she announced my transplant, and I quickly gave a report and referred folks to this blog for more information. Liz... to my left and a little behind me in her chair... tearily added some to my story... and later said she was surprised she teared up at that moment. It is still an emotional story when we tell it sometimes... especially to groups who understand the blessing of a kidney transplant when so many folks with PKD end up dying without receiving one. I don't recall the stats on this, but if Randy reads this, maybe he'll comment on that statistic.

Related to the Walk: Candace reported on details so far, and encouraged us all to begin to advertise with posters, flyers, and getting our PKD Walk websites going. She reported on her own door to door experiences and fired us all up about what we can personally do to encourage people to GIVE MONEY for our cause of finding a CURE FOR PKD. Liz and I are inspired... her to take info to U.T. School of Social Work... me to take it to our TNOYS Conference next week.

In talking to Candace about Shayna's role in helping she brought up the idea of Shayna working the Inflatable for the little kids; including watching numbers inside at a time, keeping the big kids out, organizing kids' shoes upon entry and exit, and maybe even bringing some of the Awesome Foursome to help her. I volunteered to work with the Sumo Wrestling activity, which, I guess has to do with getting larger kids and adults into and out of the Sumo Suits. Both of these activities are planned to bring people out for the event and to keep people there for awhile to mix and mingle with PKDers and learn more about PKD and it's affect on families.

There are also plans to have a fire engine there and maybe even a band. All agreed that the "PKD Heaven" display was a great addition last year and it really brings home the seriousness of PKD as a disease that impacts all people. So, we are now in the season of getting out the donations for PKD research and completing Shayna's Community Project, and I, for one, am excited about the event!

Francine concluded the meeting with presenting a plaque the chapter received recognizing their contributions for funding research, which one of the past leaders who has passed on had much to do with.

376) August Clinic Visit

August 8, 2009
Saturday

Morning Musings: The dog wakes me up at about 6:30... wanting to go out. It is the nicest time of the day here in Austin these days... I stand on the back porch waking up and watch her busying herself about checking all her "places", seeing if there are any early critters out there to grab before they fully wake up... then its off to her other places: where she 'does her business' before inspecting the fence line. I decide its time to water our new hillside plantings, telling myself, "new plantings can be watered on our off days" and I haven't watered ours since last Sunday. I'm also thinking about my dad and hoping he is getting better. He still hasn't contacted us since getting out of the hospital, and based on our last argumentative conversation, I am letting him heal in peace. I heard yesterday from Katie that his computer is "goofy" and so I realize he might not be following this blog or reading the soft emails of cheer and healing I've occasionally sent him. Namaste Dad. Coffee aroma brings me back to the present... got to get a cup...

Last Clinic Appointment: Liz and I went for my clinic visit last Wednesday, after my labs on Tuesday. I had forgotten my lab appointment on the 28th and didn't even realize it til Bernadette called later, asking what happened. I chalked it up to post-vacation brain drain, or, as Kim continues to say, my post operative fuzzy brain. At any rate, it slipped my mind so I went in Tuesday instead. Maxine the LVN brought me into a treatment room and did the weighing and BPing and I have lost 4 pounds since last visit so I was pretty happy about that. My BP was good and this time she didn't give me copies of my labs and I didn't ask.

Dr. Lewis came in and reviewed my labs and did his exam and he continues to think all is going quite well in my healing and adjustment to this foreign kidney. I asked him if he'd read the recent NewYorker article about people who donate kidneys to strangers. This stopped Dr. Lewis up short. Yes he read it and No he didn't like or agree with it one bit. His disagreement went beyond mine: mine being focused on the author's portrayal of dialysis as "a kind of death-in-life" and "gruesome" caught me as one-sided and simplistic and I wondered how many dialysis patients she had really interviewed. Sure, there are lots of people who HATE dialysis, but there are, in my experience, just as many who have adjusted to it and accept it as a necessary part of life on the planet... and who make the best of it as we do with any chore we don't really enjoy. Certainly this blog has tried to put the most positive spin on dialysis and how people can integrate it into their lives as an educational and enlightening experience that helps them appreciate every minute they have on the planet... similar to a near death experiences impact.

Lewis' take? He scowled that the whole thing was "yellow journalism" and that it was representative of what magazines publish these days to sell their copies. From his perspective, the references to antiquated research from the Victorian era of psychology, back in 1967, using "free-associative interviews, dream analysis, and Rorschach and thematic apperception tests" was completely unnecessary, given the amount of more recent research about kidney donation. I agreed wholeheartedly with this, and at the time mentally criticizing myself for being too blindly acquiescing to writers' verbiage. I want to be more thoughtful in reading and compare writings to my own ideas as I am reading rather than data entering them and somehow subconsciously debate them later as the synapses are having difficulty hooking onto them.

Anyway, Lewis made some good points that I agreed with and I came home to reconsider everything the author had written with a new filter. The rest of my appointment went fine. Lewis is concerned by some coughing I have right after meals sometimes, so referred my for a "barium swallow and gastric emptying study"! Sounds impressive, huh? Doc says we should check into it and he referred me for the test and then I make an appointment with a gastroenterologist (Dr. Poreddy) they work with. All my lab work was excellent again, and we are getting ready for busting my 6 month anniversary, on September 9th! We set our next month's appointments for lab and clinic, and I later set appointments for the BSGES and gastro-doc.

All is well.

375) July Report & Vacation

August 2, 2009
Sunday

Home: I was channel surfing yesterday while napping on and off after a busy week at work... and I happened upon one of Wayne Dyer's* presentations on his new book, Excuses Begone, and it reminded me of something I have learned and forgotten many times. If we direct our thoughts to what we are thankful for and think about... in those last few minutes before we drop into sleep... we want for our future there is a greater likelihood of manifesting those things in our futures. When I got really tired of, and finished with my experience of dialysis and waiting for my new kidney... I think I started focusing on a new kidney and the changes it would bring to my life and being thankful while imagining a new life as I went to sleep... and within a short period of time... we were surprised by that fateful Monday morning call that came. I recall hoping, praying, researching paired exchanges, and expressing my frustrations along with my focus on getting this new kidney. For example see post 330 from February, when I talked about creating positive futures.

And one of the things I badly need to think about when I drift off to dreamland every night... is taking my meds on time. I go thru these spells when I concentrate on the meds and all goes well for a time. I bought a talking alarm clock that has worked fine, except I don't usually keep it with me... it speaks out from the bottom of my briefcase usually... and if, perchance, my briefcase is near me, I get a chuckle when I hear the black bag say softly, "it's nine oclock". It does have one little problem: when I put the talking alarm clock in my pocket, the little buttons get pressed by my pants when I sit down, and then the time, alarm, and settings invariable get changed. Sigh. So, now I have the added chore of sending it back and getting one that is more suited to pants pockets. That difficulty, plus going on vacation and changing time zones and daily schedules has thrown me off my pill taking schedule. I must sheepishly admit that I actually missed a morning med taking once and when I discovered it and immediatly took my meds, it took about three days to get back to my 8 am / 8 pm schedule. Then just last Friday, while doing a workshop I noticed at about noon that I hadn't taken the morning meds yet, so I am now readjusting to that screw-up by adjusting a half hour at a time til I get back to the 8 and 8 schedule. Will be back on schedule tomorrow morning. As I write this I am hoping that Bernadette is no longer following this blog, because I am really too embarrassed about my mistakes to even share them with her. When I think about it I attribute the whole missing meds thing to ADD, and is that an "excuse", Dyer would ask? Well, yes.... and, also the whole deal about when one begins to feel like a healthy human again, which I am particularly happy about these days, then it is easy to forget, or put to the back of my brain, the meds-taking that defines me as still "sick". Does that make sense? The healthier I feel the more the meds seem get forgotten. I must do something about the way I have that framed... and fast. Bernadette's germanic voice rings in my brain, much like mom's used to... "even missing the rejection and anti-infection drugs by a little shortens the long term life of your kidney" and in the vision accompanying the voice she is smiling while shaking her finger at me.

Bit of News: My dad is finally back at home and doing better, according to my sources. Since our last difficult phone call, I have been intent on giving him space (at his request) to recover and heal before "bothering" him again. I am very pleased to hear about him being back home and that is a worry I can put away. When our parents get to that age where we worry about their health and we begin to hear about their aging and we begin to realize they are beginning that stage of moving on... we, have to accept the tenuousness of life on this planet. We don't want to lose them and we also don't want them to suffer. We understand that they become more fragile and yet there is little we can do anymore to assist them. In my dad's case, as he ages he seems to get more in touch with his lack of control over everything and I think that is very tough on him. So, when he asks for being "left alone", no matter how difficult it is to let go, I believe we must respect the aged wishes, no matter what we believe. Some people would have us disregard the aged one's wishes and go on the way we are accustomed to behaving, and I think that is a move that is more about our needs than there needs. So, no matter how much it is unsatisfactory to our needs, we really show our love by accepting the aged one's needs and desires to make their lives as comfortable as they want it to be. I am sending light and best wishes to dad for the time being.

Vacation Report: We recently returned from a week in the mountains of southern New Mexico, the land of enchantment! It was much cooler and wet than Austin has been and we were thrilled by the daily rains in Cloud Croft that remind me of all the years I have gone there over my life. I recalled to Lizzie one story from the hippie years of hitch-hiking from Ruidoso to CC with Anita and somewhere along the route we got caught in a total downpour that soaked us to the bone. Then we got a ride in the bed of a pickup truck and got out in CC to meet our friends (Dale and Jay and maybe some others) and they, plus all the lookers on, were surprised to see drenched us in the sunny skies when not a drop had fallen.

I was delighted to share this mountain experience of afternoon rains again with Liz and for the first conscious time with Shayna Rose. We did some hiking, reading, shopping, and just enjoying the mountain air.

For the last few days we headed back down to Texas and visited UT folks at Balmorhea and old friends at Ft. Davis before heading back to Austin thru Alpine and Marfa. This last picture is enroute to Alpine from Ft. Davis



Notes:
*Sometimes when I need a small pick-me-up, I click on Dyer's Blog and usually can find something that works.

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