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Friday, January 19, 2018

Caregiver and nascent care recipient

This button was on my press pass to the Fall 2017 Health 2.0 Conference. I thought at the time, 'yeah, nice, that's pretty cool' given my ailing daughter's situation after her March 29th dx of Stage IV pancreatic cancer. She just had her second chemo round of a new 2-drug chemo regimen after 9 months of her first Folfirinox chemo cocktail. Folfirinox works until it no longer does -- roughly 9-12 months. We are now there.
Danielle also had to go in for an interventional radiology ovarian cyst drainage px this week, as if there wasn't enough to deal with. It was a "success," albeit another long day.
Below, the entrance to our weekly Kaiser-Permanente schlep.

Luckily for us, this K-P facility is merely 7-8 minutes from our house.

I lost my first-born (Danielle's elder half-sister) to cancer 20 years ago this July 1st. I thought nothing would ever be more difficult than that.

I was wrong. On so many levels.

Not the least of which being that a year of unremitting stress (commencing with the election of the brutish Donald Trump) has caught up with me.


My late Dad had his aortic valve replaced (along w/ a bypass px) in 1996 at age 80. My late Mother had chronic CAD as well, eventually having to have a pacemaker implant.

So, cardiovascular disease is in my bloodline genetics. I've been on relatively low-dose statins and BP meds for years. I do what I can: sparse with the red meat and fats and junk foods, gym rat devotee, not obese (5'10," 174 lbs at age 71). I did a cardiac treadmill about a dozen years ago, and never did get up to "heart rate." Barely broke a sweat (those were my heavy full-court hoops days).

Continuing delusions of grandeur, 2016

I ended up in the hospital with sepsis in early April 2015 in the wake of my prostate cancer biopsy. Wrote about that lovely entire experience here. While admitted, I had a cardiac echo px. Nothing ever came of it until my new Primary noticed a "heart murmur" during a subsequent exam quite some time later. He looked in my chart (Epic) and quickly found the earlier Muir Medical Center cardiac echo report. It had been deemed of "non-clinical" import. Which is probably why no one brought it up, and, admittedly, I'd not looked via the patient portal. I had other things to deal with at the time.

After Danielle fell ill, I saw my Primary again, and asked for several referrals, worried about my persistent daily stress levels, and the potential impact on my renewed "caregiver" duties.

Among the docs I subsequently saw was a cardiologist (whom I really like). I had a full workup, including bloodwork, static EKG, treadmill EKG, and another cardiac echo.

My EKGs were fine. My bloodwork panel assays were all in the normal range, my BP is "normal range," my BMI is normal.

My new cardiac echo, however, indicated a worrisome decline in my aortic valve viability ("stenosis"), and, while my "ejection fraction" was normal, prudence would dictate "active surveillance" follow-ups.

In December I had yet another cardiac echo px.

Further worsening of stenosis, and a drop in ejection fraction (the latter getting closer to the line). Time to discuss action.


Transcatheter Aortic Valve Replacement. A "non-invasive" alternative to "SAVR," (the onerous traditional open-heart surgery). Sedation and a Local, and you go home a day later with a sore groin.

Dr. Chang (my cardio doc) had mentioned it, saying that it's becoming the "standard of care" outside the U.S. But, while the TAVR px is done in the states, it's only approved here for "high" or "prohibitive surgical risk" patients (i.e., older and sicker patients).

And, that cohort restriction problematically biases the relative TAVR vs SAVR outcomes stats, making it difficult to make a fully-informed choice under the pressure of time.

Given that the TAVR option appears to not be an unalloyed outcomes blessing in any event (to the extent we can truly know, via the relative paucity of current data), I am likely to opt for the SAVR px, and will soon meet with a recommended cardiac surgeon to discuss it. I suppose I could go all "Medical Tourist," fly to Germany or Switzerland, pay cash (~$100k), and do a TAVR.

Probably not. I could pay for it (ugh), but, probably not, all things considered.

Beyond the well-known patient post-op adversities of the SAVR px per se, my daughter's relentlessly worsening condition dictates that I address this sooner rather than later.

So if this blog goes increasingly dark for a while, you'll know why.

If this blog goes away, I guess you'll know why as well.


Next up, HIMSS 2018. Given all of the foregoing, I rather doubt I'll be there, notwithstanding that it's again being held in my old Las Vegas stomping grounds.
In 2012, just on a lark, I applied for a HIMSS Conference press pass. To my utter surprise, they approved it!
Why do I continue this ankle-biting effort?



Planning to have open heart surgery anytime soon? You might want to ask your cardiologist to book an afternoon slot in the OR.

New research shows that heart operations performed in the afternoon produced better outcomes than those done in the morning.

Because afternoon heart surgery syncs with the body's circadian clock (the internal body clock that controls when people sleep, eat and wake up), it reduces the risk of heart damage, the French researchers said.

"Currently, there are few other surgical options to reduce the risk of post-surgery heart damage, meaning new techniques to protect patients are needed," said study author Dr. David Montaigne, a professor at the University of Lille.

In one part of the study, his team tracked the medical records of nearly 600 people who had heart valve replacement surgery for 500 days, to identify any major cardiac events such as a heart attack, heart failure or death from heart disease. Half had surgery in the morning while the other half had it in the afternoon.

The risk of a major cardiac event was 50 percent lower among patients who had surgery in the afternoon than in those who had surgery in the morning. That would work out to one less major cardiac event per 11 patients who have afternoon surgery, the researchers said…
Link here.


My friend the Health Care Futurist Joe Flower and his wife Jennifer are selling their Sausalito live-aboard tug.

I've been on it, it's magnificent. I'd buy it in a heartbeat had I the money. I've had my eye on this one up on Vancouver Island, BC. Seriously.


I met with the referral cardiac surgeon, really like him. I am totally comfortable doing the SAVR under him ("open heart"). He wants to evaluate a "cardiac echo stress test" first, and sees no dire exigency, given my total picture.

My daughter's cancer, however, has taken a significant turn for the worse. She spent M-W in the hospital, and we've had to buy a bunch of "DME" for her return home. They want us to get a "hospital bed," too. Talk of "Palliative Care Unit" and "hospice" is in the air.

The stress, man...

More to come...

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