466) Ongoing Medical Contacts Through the Cloud of COVID-19

July 9, 2020

Thursday

Telehealth Appointment: I had my regular cardiac checkup appointment with Dr. Wozniak set since September, 2018 so when our appointment rolled around this time the staff over there was wanting to schedule it online, which was fine with me.  

Wozniak's practice uses the same tele-health app that I use for my counseling practice (Doxy.me) so it was interesting to me to be on the "patient" end of the conversation for the first time. The connection with his office seemed to have more picture quality issues than I usually do using the same system: picture broke up some and volume crackled, making us finally opt for switching to phones set on speaker.    

Not much has changed since Dr. Wozniak's last meeting with me: still have ankle swelling and shortness of breath ~ from his perspective; "valvular heart disease" with "left carotid bruit".  We agreed on the following plan: 

1.  I'm going to experiment with holding off on my Norvasc for a week because it can cause ankle and leg swelling.
2.  Watch my BP closely, since Norvasc is a BP med and see if swelling goes down
3.  Schedule another echocardiogram in the next couple months, and
4.  Meet again in 3 months

The Interface: One of the things that is getting more important as I age is the interface between my organs and my diseases, as shown in this simple chart.  Wozniak had read the materials I sent him about the connection between pulmonary hypertension and HHT (That material is posted on Jack's HHT Adventure)

Ongoing Medical Issues & COVID-19

I’ve been thinking about this whole New Normal as though it were the backdrop of a sci fi story where an inept national bureaucracy misses the importance of a seemingly virile sickness because it is so wrapped up it's own misappropriations and meaningless policies. In fact, the government thinks of the growing epidemic as a helpful distraction that can be used like the curtain hiding the Great Oz. A certain portion of the scientific community assesses the epidemics as a real threat and yet the Machiavellian leader has convinced the population that the evidence need to support scientific proof is too complicated and intellectual to get immediate results.  Meanwhile he works his evil on stirring up public distrust in the "fake media" to keep the public from looking too closely at his own shifty financial shenanigans and questionable “executive orders”.  

So the epidemic grows inside the lungs and hearts of the population until it Is becomes a pandemic: too large to have any realistic short term solution. sMeanwhile the little horn-crowned virus is chugging away at the innards of humanity, rallying the body’s own immune system to overreact and convince the cytokines to have a hyper response and attack other healthy tissues of the body until the blood gushes out, pressure drops, and catastrophic organ failure occurs.  Unfortunately, the group that is most likely to blindly follow the libelous leader is also the group he has convinced that the pandemic isn’t so serious and that 99% of those who catch it will have no real medical issues with the virus.

All of the above is immersed in the backdrop of our New Normal and acted out alongside our much more mundane toils and troubles: replacing broken toilet seats, scheduling Doctor’s appointments… “No physical meeting; we’re only doing tele-medicine appointments right now. No, you cannot see the grand baby… we’re observing emotional distancing this week. 

“We need whipped cream!”  

“Put it on the list; I’m only going to the store once this week, scheduled for next Tuesday morning at 7:30 am, when there’ll only be three other old people in the store.”

As I was pondering this more interesting perspective of what seems, on the surface a very depressing scenario, I thought about another grand headache this pandemic effects.

It is the worrisome state of being an old fart, high risk, immune suppressed, sequestered person who has to put all their ongoing age-related maladies on hold until the pandemic wanes or disappears (“DT”). 

• I have had to put off cataract surgery when the COVID-19 graduated to a pandemic. 

• My 6 month kidney transplant checkup was rescheduled into “the future”

• I have some new skin colorings that I would like my dermatologist to look at (maybe I can send her a picture)

• I need some dental work that I am putting off… (my favorite dentist retired)

• I need a re-surgery on a Dupuytren’s Contracture that was done about 10 years ago

• I am overdue on a colonoscopy and my favorite colon doc retired so I have to trust someone new up there

• We had planned to go up to Dallas this summer to meet with the folks at the HHT Center at Southwestern Hospital to see if they can suggest better treatment or ideas for my Liver issues.  (I want a second opinion on the connections between liver shunts and HHT)… and that trip is off the table until the pandemic subsides.

• So it goes...

And that's how it appears to me today...  more coming, I'm sure.

465) The Impact of Social Isolation During COVID-19

April 18, 2020

Saturday

State of the Household: As I woke up this morning my first thought was, "I wish we still had cartoons on Saturday mornings". This thought immediately indicated to me that I was beginning the day reminiscing about simpler times or unstuck in reality.  

Six weeks of social distancing by sheltering in place with daily reminders about how many people "now" have the corona-virus, and how many died from COVID-19 increase my anxiety about life.  It is one thing to have anxiety about MY health and situation, yet on some level I can keep a sense of control.  I take my daily meds, keep up with the doctors' recommendations, eat healthy, and follow my blood pressure.  These give me some sense of being the captain of my vessel.  

Fear and anxiety about "catching" the coronavirus is like sailing my fairly ship shape boat out into a dark sea of danger: where there are unknown, unpredictable, and potentially deadly toxins.  To make matters worse, the current weather service administration has
has added to people's mistrust and confusion about what is accurate and real. Are there enough tests? Is it safe for folks to begin going out into the now empty world? Will the pandemic level off with relaxing the Stay Home recommendations? 

Saturday morning cartoons were a "safe" metaphor of children's perspective of reality; where images of the uncertainty and fear about the present and the future didn't have much of a hold on young minds (aside from the worry about "the A Bomb" bursting our bubble).

Our concern for our health... My anxiety for MY health is one motivator for maintaining all the suggestions the "experts" make for staying safe

464) Social Isolation for the Highest Risk for COVID-19

April 1, 2020
Wednesday

Sheltering in place: Many of us are now inside ~ we are home-bound and sequestered by an unceasing cacophony of bad news and public warnings about COVID-19.  It's like waking up in a the middle of a low budget sci-fi movie that has all the EXIT doors locked.  Outside is an invisible virus that invades people who are unaware of its devastating consequences. It quickly overcomes the unwary and puts them at the mercy of a vastly unprepared government bureaucracy. Inside, people are huddled together are 6 foot intervals, squint watching for minuscule droplets of each others' saliva and snot, wiping down all non-porous surfaces with Clorox, and washing their hands obsessively. 


For us who are in the "high risk" group, we have become hyper-aware of the possibility that coronavirus can live on polypropylene (plastic) and metal surfaces up to 3 days! We are careful to only go out when it's safe; we wipe down surfaces in our homes, and we wash our hands more than ever before, and today I got a couple masks from a friend of mine.  Just in case the folks who are now suggesting mask wearing outdoors or at stores is a good idea.

It is almost unfathomable to think that just a month ago I was wondering if the Texas Longhorns were going to make it into March Madness. And then, in just a few weeks we all found ourselves in a March Madness that had nothing to do with basketball.  

I got used to finding out I had PKD. I coped with that crisis by learning all I could about PKD and changing my diet and getting a fistula.  Then, when my kidney function slipped down to a certain point, I started dialysis, which was more of a crisis... and yet, I did what I needed to do to cope with that crisis.  I started this blog, got involved with organizing a newsletter for the dialysis center, and integrated dialysis three times a week into my work and life style.  I began to develop an revised and more conscious perspective about life, work, and the inevitable aging of this body. Its been my experience that people with some sort of malady have an opportunity to empathize with their medical situation and thereby intuit (or grok) something of the external world in a way that can be foggy to people who have not had to consider their impermanence in the world.

About the time I got comfortable with dialysis, I got the call that I forgot to stay anxious about receiving.  It was on a Monday morning and Liz and I had to make an almost immediate decision about going in for transplant surgery in the next couple hours.  Talk about a crisis! (You can read from the beginning of Part 2 about the transplant and notice that the lack of many posts indicates this period has been pretty "healthy" and normal.  

Today I live in a sci-fi reality where we (who are older that 70, immunosuppressed, transplanted, and with liver disease) can't go outside without worrying about infection.  This return to health anxiety added to the fear of succumbing to COVID-19 increases our hyper-conscious state and has me, at least, balancing daily apprehension and gratitude. These personal musings relate to the state of the nation in relation to this virus as well.
I am also of the notion that the coronavirus and the United States' neglectful  part in stopping (and now perhaps even slowing) it, may actually have some socio-geologic influence on ending a major epoch (the Holocene) and perhaps escorting us into the Anthropocene epoch.  In the matter of a very short period of time we as a nation of people that is part of the world population are forced by a virus into social isolation. If, as I believe, the eradication of of COVID-19 takes as much longer as "flattening the curve" may take, we could see major changes in cleaning up the environment.  Simply stated, keeping people out of swarming the planet, polluting the water and pushing carbon dioxide into the atmosphere, can slow the weather changes that are so worrisome.  

The question is how the public will adjust to all the changes that remain after the coronavirus pandemic is over?  Our return to the world we distanced ourselves from a few weeks ago may be as challenging as coping with the world we are trapped in today.   

462) World Kidney Day

March 12, 2020
Thursday

My motivation for posting on my blogs is encouraged by my brother-in-law who is visiting and maintains several journals simultaneously!  I think the current COVID-19 crisis is important to document on blogs such as mine, for people who have compromised immune systems from taking cyclosporine, myfortic, and other immune system suppressants.  And,

since today is World Kidney Day we should all 1) wash our hands carefully for 30 seconds; 2) drink up a fresh, cold glass of H²O, toasting the fact that we have another day on the planet!  And, 3) Keep your hands away from your face unless you wash them again right beforehand. 

Today's Message is quoted from an online article in Renal & Urology News World kidney day 2020: Kidney health for everyone everywhere.  "In 2020, the World Kidney Day campaign highlights the importance of preventive interventions – be it primary, i.e., to prevent de no CKD, or secondary or tertiary, i.e., prevention of worsening early CKD or progression of more advanced CKD to end-stage kidney disease, respectively. Primary prevention should focus on the modification of CKD risk factors and addressing structural abnormalities of the kidney and urinary tracts, and exposure to environmental risk factors and nephrotoxins. 

In persons with preexisting kidney disease, secondary prevention, including blood pressure optimization, glycemic control and avoiding high-protein high-sodium diet should be the main goal of education and clinical interventions. In patients with moderate to advanced CKD, management of comorbidities such as uremia and cardiovascular disease along with low-protein diet are among the recommended preventative interventions to avoid or delay dialysis or kidney transplantation.

"[Tertiary prevention indicates managing disease after it is well established in order to control disease progression and the emergence of more severe complications, which is often by means of targeted measures such as pharmacotherapy, rehabilitation, and screening for and management of complications.]

"Whereas national policies and strategies for non-communicable diseases may exist in a country, specific policies directed toward education and awareness about CKD screening, prevention, and treatment are often lacking. There is an urgent need to increase awareness for preventive measures throughout populations, professionals and policy makers."

461) Missing an Anniversary in a World of Worry

March 11, 2020
Wednesday

Shayna texted a little while ago: "happy belated birthday to Mordecai! 💕"  I realized we had missed it again (It's March 9th).  And it is no wonder, with all the other world news that is crowding everything out.  We with immunosuppressed systems (and our friends with immune-deficient systems) fit that category of folks who better watch carefully or we might just lose the benefits our modern world with state-of-the-art medicine has accustomed us to. 

I, for one, worried excessively about going to the university to be part of hosting a webinar for social workers in China because of the warnings coming out about my particular group's mortality rate given the new COVID-19 epidemic.  Watch out if you are:

1. Adults over 70
2. Serious long-term health issues (Transplant, Liver disease, Heart issues, HHT, etc)
3. Compromised immune systems
4. Shortness of breathe
5. Avoid crowds

For us the CDC recommends just staying home.  For the most part I am happy to stay home.  I will only worry about others coming into my home and infecting me! And, of course as soon as the CDS recommend that us old folks "stay home", the Trump Administration overrules the CDC recommendations.

The upshot from Jack's Brain

Since my liver issues have been crowding out my old favorite kidney issues (last year especially) and with little real detailed information and trust (like I used to easily have with Dr. Richard Lewis) I have been thinking more about how one leaves this life and the usually comforting consciousness we have about our daily experiences here on the planet.

When I imagine the narrative of departing this reality~life~plane~world~existence I conjure up scenes of softness with those I love by my side as I slip away peacefully.  Of course, thinking about succumbing to the Coronavirus is much more appalling. The sick patient is covered with plastic so as to not infect any hospital staff or relatives.  There are tubes up both nostrils, a resuscitator in the mouth and no ability or opportunity for last goodbyes with family aside from the blurry view through three layers of latex.

The dying patient is alone, choking, and unable to communicate.  Sounds horrible to me. 
Hopefully I will be one of the old farts who dodges the virus and is able to have the kind of slipping away that is planned for and mercifully accepted, like slipping out of the party when one has had enough.

460) Annual Update

February 10, 2020
Monday

Update: Since our last update on the 10th anniversary of my transplant, a number of events have transpired to make the last year one of change; somewhat similar to a carnival ride that mixes thrills and nauseousness.  

Highlighting the ups and downs of the last year comes to me now as a list, so I am listing the events:

• We find out Dr. Richard Lewis is gone from the Transplant Center and I am to be transferred back to Austin Kidney Associates for followups (assigned to Dr. Ashvin Baru).
• I go to my primary care clinic for ankle swelling and get some lab work and an ultrasound from Austin Regional Clinic that shows "elevated liver function tests" (LFTs) and "small hypervasular foci scattered throughout the liver" and am referred to Texas Liver Institute for exam related to  inflammatory liver disease.
• I meet with Dr. Jennifer Wells who orders an MRI of my abdomen and diagnoses me with Cirrhosis, non-alcoholic (HCC): results that have been forwarded to Southwestern Hospital's (Dallas) HHT Center for review by their liver docs.

 These are the downs, by the way.  Some of the ups include,

• Katie & James wedding and their restoring the Forest Hill house
• My leaving TNOYS in January, 2018 and settling into my new private counseling/consulting practice office near downtown.
• Liz getting a raise at The University and buying a new car.
• My realizing there is a need for a personal patient's blog about HHT [Jack's HHT Adventure] since very few people (or doctors) know much about this autosomal dominant disease ~ thus the need for my shifting my blogging over to addressing and sharing about HHT.

My plan: At this point I am thinking that most of my blogging about my current medical adventures will probably be related to my liver & HHT issues, so I will put those posts in the other blog.

I intend to continue to use this Kidney adventure blog to write about issues and updates related to my kidney transplant, polycystic kidney disease (PKD) and items of interest to the dialysis, transplant, and CKD audience.   

459) Ten Years Ago Today!

March 9th, 2019

Saturday

On this day, back in 2009, I got the phone call everyone on dialysis wants and never expects to get. Lizzie and I spent hours of fretting about whether or not to accept a cadaver kidney coming in from San Antonio (see post # 337*). What a day! We ended up at the Transplant Center that afternoon getting me prepped and prompted for a transplant. It was in no way a normal day... so at the end, I went to sleep.

While I was asleep, a miracle occurred: I didn't know the miracle occurred because I was asleep.  And the miracle was that "Mordecai the Miracle Kidney" came to live inside me right beside my other kidneys.  When I awoke in the morning, the first thing I noticed was that I was still on the planet and boy was I groggy!  It took hours and hours for me to fully awaken to the situation. 

Now it's ten years after that day, and this song comes to mind from "Ten Years After" of course:  https://youtu.be/wggg74Eieas

*Link to Post #337:  
http://jakidney.blogspot.com/2009/03/336-in-which-jack-gets-kidney-call.html

*Link to Post #1: 
https://jakidney.blogspot.com/2006/04/my-first-time.html 

(458) The Passing of Bill Peckam

January 25th, 2019

Friday

I heard through the web-vine in the last few days, that Bill Peckham is no longer on the planet.  His name is sprinkled throughout this blog. You could say we were "blogger buddies" although I think I only talked to him once or twice (see Post 454).

Mark Neumann, writing for Nephrology News & Issues, said of Bill: 

"He started a blog on his own website called The Sharp End of the Needle, that included stories about his travels, debates about policy issues and the ESRD Program and interviews with kidney care staff and fellow patients about ways to get the most out of dialysis.

“Nobody signs up for (dialysis) as a lifestyle,” Peckham said in a talk he presented after his Grand Canyon rafting trip, but “being on dialysis really didn’t impact my vision of the future” in carrying on with life. He worked full time for 22 years in the event production industry building conference exhibits before retiring in March 2017."

When I was first wondering if and how I could work full time while being on dialysis, Bill's example of dializing all over the world encouraged me to continue to do trainings in other cities and travel to Washington D.C. to advocate ESRD patients. As an advocate, Bill encouraged people to accept dialysis as a way to enable us to live life fully, "the way we are meant to live".  He supported that belief by living fully, including rafting down the Colorado River while use "home" dialysis throughout the trip.

 Bill Peckham will be missed by the kidney dialysis community: RIP my blogger friend.

(457) Sunday Morning Ceremony # 477

May 6, 2018

Sunday

As I was making coffee and setting out my meds this morning, with the bright sun streaming in the window, I was thinking how I do this every Sunday morning and how the sun hits the table at different angles throughout the year.  Year after year after year.

It made me wonder how many times I have performed this ceremony for Mordechai's continued health as well as my own. Using an internet Time & Date Calculator, it comes out that I have completed 476 pill box fillings since March 15, 2009.  Through many different pill variations (the names and dosages come and go) that are tracked by number sequentially through the years, I have sat down at the head of that table time and time again, arranging the bottles and boxes; getting out a serrated knife with which to extrude the encapsulated cyclosporine capsules from their plastic pouches; pulling out the most recent Clinic list in case I need a reminder about a specific time and dosage; and going through the process slowly and metholically. 

Although the details evolve and recede like the tides, the process happens every Sunday morning, in synch with the cycle of the Sunlight seasons.  So, it goes.

 

 

(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 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