473) Live Person to Live People meeting: Our appointment with Dr. Baru!

May 9, 2022 
Monday

Is there light at the end of Covid-19's 

"Live Long And Prosper ~ 🖖 

Liz and I were happy to meet with Dr. Baru in person this afternoon. I was able to discuss my recent concerns with my rising blood pressure (BP) ratings, BP med change possibilities, and agreed with the plan that Baru came up with. 

Some reportage of these talks and various adjustments are possibly informative here for people who use meds to lower their blood pressure. Both by Cardiologist (Dr. Robert Wozniak) and my Nephrologist (Dr. Ashvin Baru) for number of years.  I currently take 

some other medical advice he mentioned (like going back for more treatment for the Dupuytren's contractur which I will not be looking forward to... and yet I do think he is right... I remember how horrible and ugly my dad's was near the end, and how some of us couldn't pronounce Dupreeshun's contrack-sure .

About my last Labs, Dr. Baru said my creatinine level is good, my liver function 

stable, and my ankles look normal, not pillsbury puffy!

473) PKD Day, September 4, 2022

 

474) PKD Day - 2022

March 28, 2021

Sunday

Happy Belated Birthday: We missed Mordechai's birthday again this year!  It was 12 years ago on March 9th that Mordechai the Miracle Kidney popped into my abdomen! We may not have

Today is #PKDAwarenessDay and we are on a mission to spread awareness and #endPKD! Polycystic kidney disease is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys. As the cysts accumulate more fluid, they get bigger and bigger, destroying healthy tissue, which leads to high blood pressure, other complications, and often kidney failure. pkdcure.org/awarenessday

472) Mordechai the Miracle Kidney ~ 13 Years in Service & Counting

March 9, 2022
Wednesday

Today we remembered that today is the 13th anniversary of adding a third kidney to bolster and take over the duties of my two cyst-crippled, broken-down kidneys ravaged by PKD.  

Read all about the transplant on this blog, in Posts # 337 and #338 through #340.  This is the first time in several years that we remembered this propitious past event on the actual date!

And so we say a toast to Mordechai on this day: me with cran-raspberry juice!

471) Two Labs in Two Days for Two Docs

February 26, 2022
Saturday

Setup: I had several of my regular doctor's visits scheduled for the end of February and beginning of March and a number (25%) of the docs want lab work done before we meet so they are up-to-date on the status of my disease conditions.  So I had two sets of labs scheduled for a week or two before two of my doctor's appointments; on February 20th and February 24th. 

 

So, when the lab sends out the reports, they send 2/22 results to my liver doctor's office and the 2/24 results go to the kidney doctor's and they both want different tests done. For example: 

 The kidney doctor can only see on his report the light blue and the liver doctor can only see the light orange.

It's kind of like the blind docs describing an elephant only on the data they have on their specific chart!  I have BOTH sets of data on MY chart, impelling me to make my HTML chart into a PDF (or JPG) to send to each of the docs... and as long as I'm doing that... I might as well send it to my cardiologist and neurologist as well.

Discussion: One of my ongoing concerns with having too many chiefs (not chefs) stirring the pot (purposeful mixed metaphor) is ensuring that the decisions are made somewhat collaboratively and that all the docs are seeing and agreeing on the whole elephant.  This is challenging for patients with chronic health conditions who have a number of doctors, and specialists that have that generally patients who have complex medical issues with many doctors involved want more communications between the doctors treating them. It was acknowledged that "better communication among health care providers would improve patient care..." and could "...eliminate potential mistakes, such as medication interactions..." or even which medications might be better suited in certain situations.

February 28, 2022
Monday

Texas Liver Institute 3 Month Follow Up: At my follow up appointment with FNP Pingleton, the provider who took my case from Dr. Jennifer Wells when she left TLI, I verified that each of my docs receive only their own lab reports from Clinical Path Labs (CPL) so when my 

various docs ask for different lab analyses, those data are only sent to them... unless I make a PDF of ALL the labs and send it to the other docs! For example, only my liver doc got 

the following that shows how

low my Iron Saturation is: my kidney doc didn't get that low rating because it wasn't requested in his lab request.  So, FNP Pingleton has made a referral to Dr. Poreddy for a "capsule study" to look around the corners Poreddy didn't get with his colonoscopy or EGD reach.  Meanwhile, when Dr. Baru saw the lab analysis I made a PDF of and forwarded to the Austin Kidney Associates portal, he referred me to a new provider (to me) for monthly Iron Infusions.

February 29, 2022
Tuesday

Dr. Manchanda - Associated Neurological Specialties Follow Up: Liz and I met with Dr. Manchanda, who went over my recent lab reports carefully and agreed with Dr. Baru taking me off aspirin completely.  Dr. Manchanda also listened to our reports about all the recent procedures and assessments I've been through.  Afterwards he did a basic neurological... directing me to walk back & forth in his office to watch my gait, testing my arms and legs' push / pull strength (motor strength & control), tremor check, and  coordination (quickly touch your finger to your nose and then to the doctor’s hand). He was focused on his exam and not overly talkative: rather watching and listening closely... and I got the impression he was paying attention to how fuzzy my brain and memory are today.

Dr M. concluded that he wants no changes in meds, copies of any lab reports that other docs are ordering, and for us to return in three months for another followup.  

470) Gratitude for my Physicians & 2021 Years End Review

January 31, 2021
Tuesday

Preface: If you are like me you may only check people's blogs or writings when the image of them crosses your consciousness.  Or, maybe annually, like I do.  Around this time of the year I get to wondering what my friends, colleagues, and mentors are up to and if I haven't had ongoing contact with them I make it a point to do so during the November-December-January holiday season.

Like many people in my age group (demographic, cohort, comrades, etc) I suspect that the urge to contact people at this time of the year began when we left home to go to college, the military, or anywhere far enough from our parents that we could begin to individuate. We "baby boomers" (now 57 to 75 years old) are living longer than any previous generation and that means we are living with medical baggage that a productive cadre of scientists, medical researchers, doctors, and pharmacists has bestowed upon us to keep us from the inevitable demise we want to postpone.

Year's End Review: This particular post is consolidated from several posts from my newer Blog, Jack's HHT Adventure as follows:

• The holiday cards are finally out: paper cards to relatives with physical addresses only; emails and texts to all the others

• Medical labs, sonograms, and cardiograms completed for the year, and looking pretty good I might add

• And reports from friends who are "going through" their own medical issues

• The report about removing my Fantastic Fistula; that I learned to love over the years of it's use and then as a reminder of my transplant (see post #469) on this blog

And then, of course a listing of kudos & my gratitude for all my docs who have cared so conscientiously for my well-being and health, including

• Russell Krienke 🔆 Austin Regional Clinic
• Joseph Leary 🔆 Austin Regional Clinic
• Charles Moritz 🔆 Austin Kidney Associates (now at Scott & White, Temple)
• John Battaile 🔆 Southwestern Med Center of Dallas ~HHT Center
• Richard Lewis 🔆 St. David's N. Austin Transplant Center (now retired)
• Grady Bruce 🔆 Urology Austin
• Robert Wozniak 🔆 Cardiovascular Specialists of Texas
• Jennifer Wells 🔆 Texas Liver Institute
• Ashvin Baru 🔆 Austin Kidney Associates
• Todd Smith 🔆 Eye Specialists of Texas
• David Nation 🔆 Austin Vascular Surgeons
• Stacia Miles 🔆 Austin Diagnostic Clinic
• Nareej Manchanda 🔆 Associated Neurological Specialists
• Mark Levitan 🔆 Austin Retina Associates
• Delfino Lorenzo 🔆 Austin Regional Clinic
• Vejay Poreddy 🔆 Austin Gastroenterology 

This group is really an amazing team of ardent doctors who have each been an important part of my ongoing medical adventures. Even though I dipped into history to list some of these folks (with the current doctors) , I am reminded (as Liz frequently makes me aware of) just how many medical issues and procedures I had in 2021!  It's been quite a year... and we have done really well, considering how the whole nations has be immersed in the ongoing pandemic that has involved practically every human on the planet!

So it goes!

469) Like Strands of Spaghetti

July 17, 2021
Saturday

Like Strands of Spaghetti: I mentioned on my HHT Adventure blog recently that my life resembles a pile of spaghetti right now; and that is leading my fuzzy brain to contributing to both my blogs simultaneously.

Related to my kidney, the big news has to do with discussing with the docs taking out my fistula: answering the question, Will taking the fistula decrease my blood pressure on the left side of my body? 

My Kidney Doc (Dr. Baru) and my Cardiologist (Dr. Wozniac) wanted to know(5/25/21).  For some time my BP had been inching up and by May it was running in averages like 159/78; I usually take it once to several times a day.  I am aware of this fistula removal being just ONE of the eight things listed exactly a year ago in post #466!  A noted result of the COVID-19 pandemic's strangle hold on many people's medicinal needs over the last year.

Dr. Baru recommended a vascular surgeon;
Dr. David Nation. We met for a consult on
June 15th and I checked into Seton on the
21st.  Our consult was so "matter of fact" that Dr. Nation helped me to revisualize what the final result would look like and why that was preferable.  I had imagined them cutting all along the top of the fistula, grabbing the vein and pulling it out.  Nation suggests cutting over the "bulb" that pooches out and then closing off the vein just above (see illustration).  He thinks that the rest of the vein up my arm will eventually flatten out.  So, that was our original plan.

There were a number of things I hadn't considered. For a week or more, I couldn't type (part of the reason this post is so late). Another thing I hadn't thought about was/is pain.  Nation had given me about 6 Tylenol w/ codeine, which I started taking when the surgery numbness wore off.... and I FELT pain with this even more than I recall post transplant! For a number of days as the drug wore off I knew it was getting painful about 20 minutes past the 6-hour limit. It helped to put my left arm up above my head during waking hours: at night I had to get up and sit on the couch and say "ouch" every time it slipped down.

Another issue related to my continued kidney adventure and my HHT Adventure  blog (Post #14) is that Dr. Wells prescribed Xifaxan to "prevent... brain problems (decreasing the ammonia high count)  caused by liver disease. The supporting materials from the manufacturer warns patients to use caution when using Xifaxan with Cyclosporine, which I have to take to keep my system from rejecting my transplant. 

I messaged Dr. Baru for his take on all this and on July 22nd he responded: "It should not be a problem. Cyclosporine is metabolized in the liver by... rifaximin has no interaction here. ...To be extremely safe we can measure a cyclosporine level 3 days after the (Xifaxan). Please let me know. 

Dr. Baru reminds me of Dr. Richard Lewis's doctoring.

467) Birthday Boy Hits Pre-adolescence!

March 28, 2021

Sunday

Happy Belated Birthday: We missed Mordechai's birthday again this year!  It was 12 years ago on March 9th that Mordechai the Miracle Kidney popped into my abdomen! We may not have celebrated the past two birthdays because of the Covid-19 pandemic that has had us segregated from our dinner party compadres for TWO Marches now.  Will it be THREE next March?

 Yesterday was Passover and marked by the first time Grandma Joan has seen Little Chloe since she was born last February. Practically everyone we know has been hiding out for a year. Hopefully Covid-19 will be vanquished by next year and we can all get back to being grateful for how modern science protects us. I, for one, would like to get back to annually celebrating my gratitude for the years Mordechai has brought me!

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.