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.

  

 


9/15/16

449) Transplant Clinic Visit & HHT Report

September 13, 2016
Tuesday

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.

 

4/8/16

448) Ethical Decision-Making workshop

April 8, 2016
Friday
 
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. 



3/9/16

447) Annual Clinic Visit & Anniversary

March 9, 2016
Wednesday
 
Liz and I trekked up to the transplant clinic in north Austin yesterday morning for my annual exam with Dr. LewisOnce again, all is well with the miracle kidney.  Creatinine is at 1.2, BP is good, blood sugar a little high (but the same as every year) and all the other labs are good. 
Before Dr. Lewis came in, Maxine weighed me, asked the regular update questions and took my BP.  Then Kim the Nurse interviewed me about my medical issues for the last year looked at my EKG, and asked me about my difficulties with HHT over the holidays.  Given that gum crisis, she reported that my hemoglobin count was great, so I was glad to hear that.
Although Kim has been at the clinic only a little more that a year (she was new when were last there) she didn't know about this blog so we told her about it and she indicated she would check it out. 
As usual, I was very pleased to hear how well I continue to do so my last week's anxiety and grumpiness lifted and I am in gratitude about continuing to enjoy being on the planet.  


6/26/15

446) Video from Facebook

June 25, 2015 
Friday


I have been doing a lot more on Facebook in the last year or so and although I still check on this blog and am still considering how to update it to match my current lifestyle, once in awhile I find something that belongs up here where readers who check this can find information.  
This video is one that I really like and brings an important message to all who might be reading about PKD, dialysis, and transplants.

https://www.facebook.com/MikeHoskingBreakfast/videos/978806615486233/

Enjoy!