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 too. I 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
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.
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.
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!
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.
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
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.
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.
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.
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!
March 12, 2015
The Birthday Dinner: This year we played it low key. Did have Dale & Jan Yonkin over for Sunday dinner the day before the 9th. That in itself was a wonderful re-uniting: Liz had never met Dale or Jan and we had a grand time telling stories and getting re-acquainted. Will have to see them more regularly.
The Birthday of Mordechai the Miracle Kidney: Again low key. My thoughts are that the first 5 years are monumental and deserve recognition. Now I am thinking that 10 years, 15 years, and 25 years will be the BIG Birthdays to celebrate... kind of like wedding anniversaries.
Transplant Clinic Appointment: Liz & I went in for clinic visit on March 10th. Dr. Lewis again reported that I am doing great! "You got a gang-buster kidney!". Creatinine is perfect, etc. etc. We are happy and I am relieved. On the way home I realize that I always get quite anxious and edgy the week or so before my appointment. Then, afterwards I am in a very good mood for days.
For example, BP the next afternoon is 110/60.
Next blood work scheduled for June and next appt for March, 2016
Toast with Water! Oh yeah, and today is World Kidney Day!
September 26, 2014
Transplant Clinic Appointment: Liz & I went in to the new clinic (across the street from the Women's Center at St. Davids North) for our Fall visit with Dr. Lewis. All was pretty much the same as usual: Maxine coming in and talking about various stuff as she set up the BP cuff and then Liz reminded my of dad's birthday coming up and my BP was 165 over something!
Maxine and Liz shut up and we waited a few minutes while I "relaxed" and then she took it again... down to 145 / 72. So that was better, eh? Then Kimberly from Boston comes in: she is my new nurse; Cindy has left and Kimberly and us spend some time getting to know each other as she reviews my meds list, etc. Also tell Kimberly about recent annual physical, referral to Dr Hanschen for another colonoscopy and my 15 minute consult with him about if I really need another one since the last one was clear AND I thought he said I wouldn't have to need any more. He went to check my records and they have been lost in the shuffle to put all paper online over the last year or so. So we agree that I'll get another one and I told Kimberly that I haven't scheduled that yet.
Finally Dr. Lewis comes in and asks how I feel; says I "look great, better than most 67 year old's who haven't had a transplant". He is concerned about a blotch on my forearm and referred me to his dermatology group for a screening. Lewis reports that my creatinine is 1.2 and all else looks really good. Has me jump up on the table and listens to me and pokes me around my lower abdomen, etc. and pronounces me in great shape. And, at some point HE does my BP and when he checks it, it is 122/70!
We are all happy about that. He wants to see me again next March for my next annual. So it goes!
March 14, 2014
Transplant Clinic Appointment: Liz & I went for my annual clinic appointment this morning; got in with no waiting, and learned from Maxine that today will be a "nurses meeting" only cause Dr. Lewis has two transplants to do this morning. I had seen him in his office as we walked by and noticed that he was in scrubs.
Maxine did her usual patter and BP (133/63) / temperature / gig. Liz took a picture with her new "smart phone" of me sitting there waiting. Maxine also caught us up on clinic changes: Jessica leaving to be a stay-mom with her new baby, and their adding Cindy from the Plano Transplant Center as the new nurse.
Since Dr. Lewis was not going to come in for his chart review and exam, Maxine also gave us the lab results, as follows:
- Creatinine 1.3
- Blood Sugar 113
- Colesterol 143
- HDL 38
Cindy came in and introduced herself and reviewed the chart and asked all the other more-medical questions like did I get a flu shot (yes), and aches and pains (no), swelling (no), abdominal pain (no), etc. etc. She just moved here in the last 3 weeks and has found that rent and housing costs here seem higher than Dallas / Plano area.
So, basically all is great, as usual! On the way out I poked my head in on Dr. Lewis and said "Hi... good luck on your transplants today" and he smiled and nodded quickly and turned back to his computer screen. Next appt set for September.
PKD Walk ~ Our Page: Also of interest, we are again participating in the annual PKD Walk for A Cure this year, although not as conscientiously as we have in the past. I did set up a donation page for any of you who want to donate. I am asking for friends to simply donate $10 this year. You can access my page at Jack & Liz's PKD Walk Donation Page Thanks in advance to any of you readers who choose to donate.
March 10, 2014
Yesterday we had our little family birthday celebration for Mordechai the Miracle Kidney... 5 years old! Yes, it was 5 years ago yesterday that I got my kidney transplant and for the first time we almost forgot the date. We were sitting around on Saturday and at some point Liz remarked that this is close to the anniversary... and we hemmed and hawed around til I looked up the date on this blog. Luckily, we hadn't missed it so we rushed around and added a little celebration to our already planned Sunday.
On Sunday we were already planning for entertaining my cousin Susan and her husband George from Michigan. I hadn't seen Susan since I took Liz & Shayna to Michigan for my Aunt Marilyn's funeral back in 2008. This is Susan's first trip to Texas so we had them up from San Antonio for the day; took them to see the capitol; and fed them green chile stew. I am aware as I write this that at each anniversary we have had different groups of close friends over, and it felt just right to do this one with my closest relatives outside my immediate family.
Susan and I spent a good piece of time hanging on the rail of the second floor of the capitol reminiscing about our early years at the Christi Lake cottage, all the changes and passings on of our moms, and her brother, and how important it is to keep that sense of "family" as we age ourselves. Lots of memories shared later at the dinner table, along with the special perspective of George, who was older than Suz and I during those formative years, and brought his own perspective to memories of those times.
This was a perfect way for me to remember how fortunate we are to have family connection and to share gratitude for continuing to be on the planet. I am curiously looking forward to whatever special kind of celebration happens a year from now on this auspicious date.
January 28, 2014
Tuesday
Wow! It has been a lonnnnnnnnng time since I posted up here! All is well with me and my Mordechai the Miracle Kidney! On facebook today I got this announcement of a new webinar from PKD and wanted to give it a pass-along up here in blogland.
On PKD's Facebook page today:
"What happens after you are told you need a kidney transplant? Melissa
Blevins, RN, MS, will walk us through the process beginning when your
physician tells you it is time to consider a kidney transplant. Learn
more about what to look for in a transplant center, the medical
professional team that will be answering your questions and helping you
navigate the process, tests and evaluations required for transplant
recipients and living donors, transplant costs, insurance coverage and
much more. Transplant recipients will also share their experience and
our expert panel will answer questions following the presentation." The webinar will be on February 4rh.
If you are interested, sign up for this free webinar hosted by Melissa Blevins, RN, MS. Register here: www.pkdcure.org/learn/webinars-education
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.) 
