(454) Kudos to Bill Peckham

December 5, 2017  

I was just paging down through my Facebook posts and found the following one from Bill Peckham.  This guy has been posting on Blogger since before I started many years ago.  For a number of years I followed his posts closely since he and I were both experiencing dialysis and writing about our experiences.  Bill's digest of information on all the facets of dialysis and resources for patients was always the best of the best, and it appears it still is.  


(453) Silicone Kidneys on the Horizon?

October 8, 2017  

This morning I received an email from one of my colleagues (David Ray) asking if I had seen the new issue of Wired; specifically Megan Molteni's article on the future of implanting artificial kidneys.  Her article report the results of ongoing research, testing, and design work from the last 20 years and some of the funding history over those years.  

Now there is exciting news on the possibility of actually implanting an artificial kidney and people "signing up" for being considered when clinical trials begin in 2018 or thereabouts. 

Exciting Futures for folks on Dialysis!


452) Bouncing Around, Myfortic?

May 1, 2017

Since my last yearly follow up, seems my meds have been going haywire: especially the Myfortic dosage.  For years it was a stable dose.

Then it was too low so the doc went to three in the morning and three at night.  Too high.  So then I was at 2 in the morning and 1 at night.  Too low.  Today Mary from the clinic called and starting today I go to none tonight and tomorrow and then I start at 2 & 1 on even days and 1 & 1 on odd days

I asked her if Dr. Lewis knew why I can go for years with no real med changes and then it's all over the place.  She says he didn't say anything, and she tried to assure me by saying, "It's just changes with time".  

She doesn't know how I dislike changes!  Next lab work a week from today at 7:30 am at the same place as USUAL. Ahhhh.

So it goes.   


451) For those just reading this blog for the first time

April 29, 2017

I just posted a comment on the PKD Facebook page for someone who wished they had been able to read about someone's experiences pre and post transplant.  I commented that they could Google "Jack's Kidney Adventure".  Upon checking, I realized it has been ages since I put up anything about how to find the transplant point for a reader to use as a point of entry.

On the blog post lists one way to find the day of my kidney call, find 2009, March, Post # 337.  Or, you can just use the following link:



450) In Which We Forget the 8th Anniversary

March 9, 2017

So Liz, Shayna, Joan, and I are out to eat at Dogwood Cafe tonight and suddenly Liz remembers that today is the 8th Anniversary of my kidney transplant. 8 years! We all forgot.  The mark of integration of past crisis (or trauma) is integrating the event into the fabric of one's life in a way that it becomes one of the may threads that make up the tapestry of a life.

This is a good thing.  Mordechai the Miracle Kidney is now part of me.

The annual checkup with Dr. Lewis on February 28th went well for the most part: he called my kidney "a monster kidney" and he still wants me to follow up on a heart checkup that he recommended a year ago.  He wants an ultrasound on my abdomen.  And at the end of the meeting he asks me if everything is alright.

I, somewhat kiddingly say, "Yeah doc all is well.  But you know, whenever I press here (poking myself on the rim of my belly button) it hurts".  He has me back down on the able, tells me to arch my back, pokes my belly button and proclaims, "You have a belly button hernia".  "WHAT?" Liz and I say in unison. 
"Yeah" he replies.  A belly button hernia.  You need surgery. Go see Dr. Sankar; he'll do it."

The Rest of the Story:  Dr. Sankar is 8 years older than when he assisted on my transplant; still a friendly guy; and he gives me more info on the options.  We decide I will wait til after I get my heart checkup and take care of my HHT gum work.




449) Transplant Clinic Visit & HHT Report

September 13, 2016

Liz and I at the clinic for a 6-month check up.  Ran into Rodney in the waiting room: we are happy to see each other.  Its been awhile since I saw him here.  Its always exciting to see each other and congratulate each other; I think for still being around and healthy.  He and I got our transplants by Dr. Lewis the same day (or within a day or two of each other).

Also saw Maggie the Nephrology Social Worker in the waiting room and she gave a "hello". Now we are friends since she co-ordinated my training for the Nephrology Social Workers in April (see #448).  What a nice friendly clinic we seemed to have on this visit!

Maxine and Kim the nurse were there usual cheery selves.  De. Lewis reported that I still have a "kick ass kidney" and I thanked him again for giving it the thumbs up all those years ago when I was trying to figure out whether or not to take it.  He reported that my creatinine is 1.2 and all else looks good in my lab work. 

I showed Lewis my reports (CT chest angiogram w/ contrast, MR brain w/ & w/o contrast, and the CV echo of my ticker) from Dr Battaile, the HHT doc at UT Southwestern in Dallas and after some discussion and explanations about my heart's left atrium, we agreed that it wouldn't hurt to get a consult with a cardiologist here in Austin.  The result of all the testing in Dallas is that I do have HHT and we are now going to get a genetic test to find out which gene is marked so testing for the kids is cheaper.

Only other finding today is that Dr. Lewis want to up my Myfortic for a month and retest because it is a little off.  That's it until my next annual next April!  

As usual, Lizzie and I are happy and grateful as we drive off back to our work-a-day worlds.

Here is a link to a little PKD video I saw on Facebook for anyone who doesn't know a lot about PKD.  Oh.  And if you can spare some bucks, donate to the PKD Foundation soon.



448) Ethical Decision-Making workshop

April 8, 2016
I just have to post today, since I saw many of my old friends from El Milagro Dialysis at an ethics workshop that I presented for the Texas Nephrology Social Worker Conference at the St. David's North Austin Medical Center.

This was a fine group to do a workshop for and even though it was my first foray into ethical decision making for healthcare social workers, they said they liked the material and my enthusiasm.  

I hope to take the feedback from these expert and tenured medical social workers and integrate it into the packet to result in an even more sophisticated workshop to this specialty area of social workers.  I asked for and will still receive any and all feedback from any participants who may come up here to explore the blog so we can make the next edition of the handout even better.