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
8/16/09
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.
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.
8/8/09
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.
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.
8/2/09
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.
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.
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