4/14/18

(456) In which we Walk for PKD


April 14, 2018
Saturday

Update:Today was the Walk for PKD here in Austin.  We've missed it that last few years so I wasn't really even planning to drive all the way to Cedar Park to do this walk.  I had already sent in a donation at the first of the month and then Liz mentioned during the week that she had signed us up for the walk...

So, on Thursday night I decided that since we are walking, I better get a DONATION PAGE up so we can at least get some of our friends and relations involved tooI get the page up and Liz donates to it while I am still editing it, so it doesn't show her kick in... I am getting to old and senile and rushed to do this it seems.   

So as we get to the walk today we notice there are lots of new people and some we have seen before.  Talked to a woman (organizer) from Boston who received her transplant 15 years ago after being on peritoneal for 5 years.  

A north Austin man who has PKD throughout his whole family talked about how he adjusted to his mother having PKD and being on dialysis, then his brothers and sisters growing up with it, and his own experiences with dialysis and now home dialysis.  It was pretty large and integrated group today: I told Liz on the way home that I always appreciate her dragging me to events that I don't want to go to and then am happy I went to. We drove the slow way home, down Lime Creek road to Volente and up around L. Travis to Lakeway and back on into town. (If "my Cheryl" reads this, we thought about you guys on our drive and hope you're having a good weekend.) 

Any how it is now up on FB and here and any donations you wish to make can be attached to this event til June they told us. Anything helps.  "Twenty is plenty."  "Just sen ten." "Let us know yer alive by pitching in five."

Here is me in my favorite educational PKD t-shirt.
  Jack & Liz's PKD Donation Page

3/23/18

(455) In Which we get Another Good Report on Mordecai the Miracle Kidney!

March 23, 2018
Friday

NOTE: I swear I thought that I put a post up here from the day we forgot that it was Mordecai's 9th birthday.  And, that is now the 2nd year we have forgotten the anniversary of my transplant.  Liz put a post on my Facebook page on March 9th at 9:00 pm as we realized it was the 9th anniversary.  And, I commented that we didn't even have a cake this year.

So, anyway I then did my prep for the annual visit to Dr. Lewis, this last weekend, including the 24 hour urine collection on Sunday (good day to pee in a big bottle for 24 hours), and labs on Monday when I turn in all that urine at St. David's South Austin Med Center. 

As always, my anxiety slowly increases through the week until Liz and I meet with Dr. Lewis at the Kidney Transplant Clinic.  Today we got up there and were quickly trying to prepare to tell the nurse all the different docs I've seen over the last year and decide that we really should do some homework listing over the year so we don't have to re-create a list while waiting for the doctor.

Dr. Lewis comes in and examines my chart, my labs, and my body.  I ask him if the 1.2 creatinine level is okay and he responds, "No... it's spectacular!".  I was thinking it is okay but maybe a little higher that it was at some point.  He did add that he wants to cut my Myfortic back some and do labs again in April to check.

We also discuss my ongoing forgetfulness and he can refer me for some cognitive testing, my hearing problems (which he thinks may be covered under my medicare), my arthritic joint in my hand, and various other medical issues I can't remember right now.

He was surprised my blog has over 100 thousand hits now.  Me too.  So, we leave there in a happy mood.  

12/5/17

(454) Kudos to Bill Peckham


December 5, 2017  
Tuesday

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.  




10/8/17

(453) Silicone Kidneys on the Horizon?

October 8, 2017  
Sunday

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!

5/1/17

452) Bouncing Around, Myfortic?

May 1, 2017
Monday

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.   

4/29/17

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

April 29, 2017
 Saturday

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:

http://jakidney.blogspot.com/2009/03/336-in-which-jack-gets-kidney-call.html

3/9/17

450) In Which We Forget the 8th Anniversary

March 9, 2017
Thursday

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.