469) Like Strands of Spaghetti

Jack's Kidney AdventureJuly 17, 2021

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

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

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

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

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.   


463) Best Practice for Responding to COVID-19

March 17, 2020

Tips for Preparing/Responding
This is not the post I want to write about the experience of being a person who meets the criteria for being more "at risk" for being affected by the coronavirus.  I'm still musing about how that missive shall take shape.

This short post relates to an important FB post I saw this morning that I want to share about things you should have at home to prepare for the eventuality of getting this virus, and, more importantly, getting medical advice from your doctors about what to do and how to go about deciding upon hospitalization.  Supposedly, this info came from an ER nurse in California (?).

"Things you should actually buy ahead of time: Kleenex, Acetaminophen (Tylenol) in 325 mg tablets, Ibuprofen (Advil) in 200 mg tablets, Mucinex, Robitussin or DayQuil/NyQuil, whatever your cough medicine of choice is.

If you don’t have a humidifier, that would also be a good thing to get. (You can also just turn the shower on hot and sit in the bathroom breathing in the steam). Also a good time to make a big batch of your favorite soup to freeze and have on hand. If you have a history of asthma and you have a prescription inhaler, make sure the one you have isn’t expired and refill it/get a new one if it is.

If you ...are on immunosuppressants, now is a great time to talk to your PCP or specialist about what they would like you to do if you get sick. They might have plans to get you admitted and bypass the ER entirely."

My Luck: As luck would have it, I happen to have appointments with my Liver doctor tomorrow (watch for a post on my HHT Adventure Blog) and with my Kidney doctor on March 24th.  What with blood work for both and in vivo visits I will probably find out if I have done a good job of my social distancing, washing hands, meeting clients only online, and wiping down all surfaces I have to touch with my hands.

Stay tuned... 


462) World Kidney Day

March 12, 2020

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."