A musing on the US’ medical amusement park

“You are a very healthy guy with normal cholesterol, glucose and you have tested negative for hepatitis C,” wrote my new family practice doctor in late March of this year. “Your thyroid test, B12 folic acid levels, uric acid levels, everything is normal.”

In her defense, she had not had an opportunity to review, let alone absorb, my complete medical history.

I was the picture of health, according to the routine blood labs, but I was dealing with disabling back pain much of the last two years. After heading down a couple of rabbit holes, the diagnosis was degeneration of the lumbar spine, which improved with steroid injections. By then I had lost six months of functionality, spent way too much time in bed, and (re)gained ten pounds of weight I had worked hard to lose with a Keto diet a couple of years ago.

Then I got some dizzy spells in September, which triggered another round of playing US style medical care whack-a-mole and pin the tail on the donkey. After more scans, tests and consultations with specialists than I can count, and at least two more scheduled for next week, it’s time to share an update here.

I now pretty much know, or at least think I know (perhaps?), that I apparently have some not-so-insignificant cardiovascular and neurological issues. (I learned how to write oblique sentences from reading medical reports and research papers, btw.)

In the middle of this excursion through the abusement park, I found myself detoured when I started pissing dark tea, a sure sign that the pain party hosted by the facet nerves in my lower back, had been rudely interrupted by a visit from a 5 mm kidney stone that just happened to be passing by. Add urologist to the list of specialists that were already on an increasingly crowded calendar. I’ve probably had at least a half dozen stones by now in my life—the first one occurred before I had medical insurance and getting rid of it cost me my first bankruptcy—so it only took a few minutes to agreed with the doctor that a ureteroscopy was preferable to another round of lithotripsy.

Surgery was scheduled for Tuesday this week, but I’m still waiting. During the pre-surgery testing last Friday, the anasthesiologist (have you noticed yet how many words in this post are ending in “ist”?) was unwilling to dance with me and the urologist, unless and until the cardiologist gave his blessing. The cardiologist told me he won’t sign off on any surgery involving anesthesia until after the stress test on my heart next week. On the bright side, I think I may have passed the stone over the weekend. Maybe it’s just my subconscious doing its job and trying to spite all the “ists” in my life lately?

The other good news is that if the cardiologist rules against an extremely minor and non-invasive procedure now—in terms of scalpels, at least—he’ll have a harder time arguing for any kind of heart surgery later, now won’t he? I can’t help but wonder if they think these things through sometimes.

The neurologist visit a month ago was also unfulfilling, and I was told the brain MRI show a condition that was typically caused by high blood pressure or smoking. I haven’t smoked for more than 20 years, and my blood pressure, until recently, has been low. Still, he wanted a cardiologist to sign off before he sees me again. No straight answers from the fresh out of school neuro.

Getting to this point has exhausted me, yet it is also reinvigorating me in some weird way. Finally passing a recalcitrant kidney stone can do that to a person. I guess that’s why I woke up at 3 am and decided to write this, instead of going back to sleep.

While I’m still waiting for an official diagnosis, it’s obvious that the MRI of my brain performed in September revealed apparently severe progression of small vessel disease, which will likely eventually lead to vascular dementia unless something else gets me first. According to Doctor Google, if this condition exists in the brain, it also probably affects the heart and other organs that depend on a supply of blood to function. Duh. Bonus point question: what organ does not require a blood supply?

This manifestation of “white matter” in the brain MRIs happens to many, if not most people as we age, if we get old enough, but it is, at least according to the radiologist’s report, unusually severe for someone age 65. I have had two other MRIs done in the last 15 years, so there are images to compare, though MRI techniques have vastly improved. The timeline for possible further progression is unknown, but a trusted doctor who has helped me more than any doctor I’ve seen the last 20 years assures me that I’m not yet manifesting obvious symptoms of dementia. This is a doctor who does not accept insurance (who knew such critters existed, right?) and was well worth the $90 consultation fee, since I can no longer afford the $700 annual membership fee. Seriously, she’s been a phenomenal physician to me and that’s at least partly because she doesn’t have to invest heavily in a staff or third party service just to handle insurance billing! Don’t get me started.

Yesterday, my first-ever visit to a cardiologist is resulting in…. SURPRISE… more testing, in this case a chemical stress test next week. Regardless of the results of that test, he told me that the echo cardiogram that has already been done indicates at least two concerns. One is weakness in the pumping action of my heart, 45%, which should be more like 55% or more. His second concern is that one of the walls of my heart is thinner than optimal. I’m still new to cardiology, but I have a hunch that spending weeks at a time in bed from fatigue or kidney stones or depression or whatever, doesn’t lend itself to building sturdy muscles anywhere, including my heart.

So, what does it all mean?

I don’t really know, to be honest. I only know what I’ve always known, but am re-learning (again) from a new perspective now: life is a progressive disease that started, in my case, in 1956.

I know—but am reminded, again—that everything is connected. Even the brain has a direct connection with my asshole. Well, at least to my gut, but I just wanted to say asshole somewhere this morning, because I’m wondering when someone is going to tell me my prostate isn’t so hot anymore either. I mean fuck (yeah, I wanted to say that too), I am a—formerly sexually active—gay man, after all.

In my intensive research, which means I’ve transcribed words from medical reports into Google, I’ve learned that cerebral SVD (acronyms are hot shit with medical-types) is as convoluted and confusticating as HIV and “AIDS” ever were. Or, “despite remarkable attempts to standardize the terminology, the lack of clarity even in basic concepts used in clinical and research settings remains an important issue,” as the journal Stroke puts it, but you’re welcome to google ‘cerebral small vessel disease’ for yourself if you’re into this stuff. The point is, as I see it, this condition requires a lot of cooperation between specialists who are, by the nature of our medical system, divided into groups. It’s like asking the baseball, football, basketball and track teams to figure out how to play in the same venue. Yes, I think analogously a lot. That’s not only a new way of thinking for medical practitioners, it’s an added layer of difficulty for patients who are not yet part of the design team for a system of collaborative medical care. At least not as far as I can tell so far.

Oh, speaking of HIV, add that to the mix of specialties that need to be involved in my care. Add the swimming team to the above list. The medical information available today is a tad bit more honest, or should I be generous and say transparent, than it was twenty, or even ten years ago. These neurological and cardio conditions are much more common in people with HIV, and—this is where they get points for transparency—people on HIV treatment. ARVs. AIDS drugs. When I first started blogging about my life with HIV (resistanceisfruitful.com), every possible medical problem for us was considered “HIV-related,” and the drugs were given a pass by virtue of long-term adverse effects being ignored in most of the medical literature. It was refreshing to read, “according to research, HIV, HIV treatments, and dietary and lifestyle factors can also increase your risk of cardiomyopathy,” in Healthline’s list of risk factors. (emphasis added by me)

There are also peer-reviewed journal articles that support the view that long-term use of antiretrovirals increases the risk of both heath disease and cerebral dementia. Before anyone reading this jumps my shit about denialism, let me state clearly that there is no doubt in my mind that ARVs have extended my life. There is equally very little doubt in my mind that my health would have declined even further than it has, if it were not for the fact that I managed to survive a 10-year break from ARVs. I also believe that the single greatest advancement in HIV management is due to a combination of factors, including a reduction in dosages of the drugs. I’ve lost track of what the current research is showing regarding drug interruptions.

Thirty five years after the first drug for HIV was approved, the prohibitively expensive “life-saving” treatment offered by pharmaceutical corporate greed…. er, I mean science, is also causing complications that result in a shortened lifespan from what those who have never had to cope , as well as a diminished quality of life, to say nothing about the enormous cost of additional care and treatment required deal with those complications. I would suggest that as read about new drugs to treat COVID, folks don’t lose sight of the fact that there is still a price to pay, and I’m not just talking about your Medicare Part C (or is D?) drug plan premium. At least COVID risk can be reduced with a vaccine. HIV, not so lucky.

Thank you to each and every US American taxpayer who is helping to pay for my excessive care. I have yet to find a way to get a statement from Medicare for the grand total paid to keep me alive this long. I will be amazed if I am not a million dollar patient by now.

Do I want to spend years in a “memory care facility” (aka nursing home for dementia patients)? Do I want to get back on the medical merry-go-round and spend my life attending medical appointments and taking more drugs again? Or dare I/we escape this fucked up country and travel and move around the world, or at least this hemisphere, visiting other countries and cultures and exiting the world living hopefully quickly and and as joyously as possible until I can join others in the human recycle bin?

Stay tuned.

p.s. Note that Michael has a doctor’s appointment next week too. Eeek! Fingers crossed.

p.p.s. As I re-read this post, I feel I haven’t given my medical care team the props they deserve. I am actually very impressed with the quality of care I am receiving. I see how busy the doctors, nurses and technicians are and I feel like I’m sucking more time and energy out of them than a “typical” patient might. Whatever a typical patient is. There is frustration on both sides of the stethoscope. I have been in a lot medical consultations and I can see first hand the effect the COVID pandemic has had on our care system. It is incredibly stressed and some providers have been forced to leave, simply as an act of self-preservation. Wait times have grown exponentially, forcing patients to be… patient. I try to remember to put myself in their shoes and I go out of my way to acknowledge my gratitude for them. They did not create the system we have, they were trained to adapt and work within it. The human body, mind and spirit is too complex to fit neatly into an organizational algorithm. Add to that the need to operate at a profit in a capitalist economy and you have a recipe for being able to provide the best care only to the wealthiest citizens. As much as I whine, I know I get far more care and service than a majority of people in this country. I admire, applaud and thank every person who has shared an exam room with me this year. I would not be writing this today if it was not for you.

p.p.p.s. I can’t forget the incredible pharmacists I have had the last ten years or so. As badly as my drug insurance plan would like me to switch to mail-order, I will never give up the service, the compassion and the human connections I’ve received from HyVee Pharmacy as long as I’m living in Kansas City. Thank you all!