Vampires and Slaves

The medium rare hamburger — was great!

Any bacteria present wandered into the dark, cold, and perilous biome that is my body. A nightmare alley for both friend and foe.

Over the next two hours I chatted with several people, sometimes in a group. We discussed the water level of the dam. Future weather. Forest fires. Covid vaccinations. Social dissent.

Obviously these are getting to meaty topics, and coming from one of the wealthiest and highest-vaccination-rate counties of the US, this could go sideways really quickly. But I admit I haven't been vaccinated… I don't believe masks help me or prevent me from infecting others… and I have had disagreements with the US government. All of these are true statements, but are likely interpreted differently than the details and my real beliefs would support. I also intentionally don't mention exactly where I live. That plus my bright yellow worker's jacket seems to help me break through a few layers of the onion that is growing here and inch a little closer to the heart of the rebellion.

With that seed planted, I head back home to the black hole that keeps me alive.

The machines and tubes — make more sense to me now. I have a feeding and drug-injection tube. This appears to go all the way down to my stomach or intestines. Nurses play with that a few times a day to give me drugs, and the feeding tube is pumping almost continuously. I also have a trialysis catheter inserted into my neck, which enables something called dialysis along with other things. Apparently dialysis is replacing my kidneys… which have decided not to work anymore. I also have tubes for things to 'leave', but very little seems to be moving through them. I want to go to the bathroom, but apparently that is not an option. Would 'unwiring' me be too difficult?

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Nurses (all RNs) come day and night to fiddle with me and the machines. I rarely sleep, and just keep watching the spinning clock. Shifts change and new nurses come in. Each new shift fiddles with me and the machines, as if this whole system is a very interesting thing to study and play with. I am apparently a great case study for something.

Sometimes the nurses attach vials to my neck catheter, which feels a lot like they are sucking my blood. I can't see how they do it: just the resulting test tube filled with strangely colored blood. It seems darker then I remember blood being. Maybe it is just dark in the room?

It is about 5 o'clock — when I return to Palo Alto. During the ride back, I did two addiction-recovery meetings by Zoom. I currently need to do four or five of these a week to stay on the 'Liver Transplant' list. As part of getting onto this queue for a replacement liver (mine decided to stop functioning along with those negligent kidneys), I signed a contract with Stanford that required a large number of things.

First… I am not allowed on roofs. Well… that isn't actually first, but it is true. First, I agreed to do anything and everything a doctor tells me. Don't drink ("check… actually wasn't drinking long before visiting Stanford ER"); don't climb on roofs ("check"); don't drink too many or too few liquids ("check"); don't eat sushi, rare-ish meat, soft-boiled eggs, and grapefruits ("apparently 'not check' but we will get back to that").

Next, I agreed to do addiction-recovery meetings almost every day: it started out as more than one a day and then tapered down. I also have to talk with a psychiatrist as often as they want. I must tell someone if I "feel strange". And the contractual list goes on and on.

I signed it in exchange for 'my life', and so I view it as an unbreakable vow. Or at least breakable in only one way.

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The addiction-recovery meetings are both the least necessary and the most enjoyable item of this contract. They are especially pleasant when I am driving: they help fill in the otherwise idle time. A twohour commute passes more quickly for me within a meeting or two than even with a book on tape. ❧ ❧ ❧

Doctors visit me sporadically — but it is hard to predict when they will visit and how many of them will be in the pack. Sometimes it is just a single grey-haired man. Sometimes it is almost a dozen people of various ages, many of which may be residents. They rarely introduce themselves and commonly don't really talk to me at all. Or maybe they do, and I just keep forgetting their names?

The doctors study me and my medical records. They don’t use their stethoscopes, which seems out of character for a doctor. Maybe some covid quarantine rule? The machines do not interest them either: I guess they are just supposed to do their duties. It is a big duty keeping me alive.

The only doctor that does actively interact with me and I am sure is ‘mine’ is Dr. A. She is a psychiatrist. My psychiatrist. She always notably arrives in beautiful outfits vs. boring, identical, medical coats. It is easy to recognize and remember her. Why I need a psychiatrist, I don't really know. But at least for the moment, she is mine.

Apparently most patients will have to find a different doctor when they leave the hospital, but I am pretty sure I want to keep her if I must have a psychiatrist at all. For one, she is nice enough to read my book. Given it was a memoir, that saved me a lot of time explaining certain things about my past. Ultimately that past did not really matter, but a veneer of a person in physical recovery needed to be developed.

We spend a number of hours talking about liver and kidney failure, addictive personalities, suicide, side effects of post-transplant drugs, restrictions post-transplant, and the physical & mental impacts of having liver and kidney transplant surgery. The core

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questions that matter to her and the Committee of Gods are: (a) will I obey the pre-surgery & post-surgery behavioral rules; and (b) will I make sure others know if anything is amiss with me mentally or physically. If I do those things, I will get on the transplant list.

A month or so later, I am on the transplant list. And find out that list is irrelevant to me.

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HEMODIALYSIS

The sun is setting — behind the Santa Cruz mountains at 5 o'clock, so I shift into twilight-mode and start visiting the local 'houses' and communities that I know. These are people's homes, but not the standard white-picket-fenced wood-siding-shingled houses that is iconic (if not real) of the American home. Some people are in RVs. Some are in cars. Some are in tents. And some are in boxes, under a blanket, or completely exposed. There are shelters, but they have many rules that many people do not like. And in the time of Covid, many of the shelters are shut down. I only visit people’s homes, not the shelters.

Mostly I am trying to keep in touch with people, and see if there is anything I can do to help. The problem is both massive (hundreds of thousands of people that are 'homeless') and intimate ('Linda' needs to replace her carburetor to stay warm). I continue to hope the intimacy will spark insights into new solutions. The ‘Pico Pico House’ project was one solution that came out of intimate understanding of individual needs, and the discourse with Jerry and Nancy are meant to help with the massive problems.

I need to talk to Grace.

Hemodialysis was invented — by Drs. Kolff, Haas, Abel, and other great minds. It removes undesired dissolved substances and excess water from the blood through special membranes. After a few hours of pumping a patient’s blood through a dialysis machine, the body has been ‘cleansed’ similarly to the way kidneys clean it continuously. With dialysis, you can live without your kidneys.

There are a few issues though.

First, the machine needs to access your blood, which it does in a couple ways. Initially, it is done through a catheter (a tube) that is hooked into your blood stream. The short-term version of that

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access method is the trialysis catheter I had when I was in the ICU of Stanford. This access method is so dangerous that you can not leave the hospital with it. A longer term version is attached to your chest, and goes pretty directly to your heart after passing over your collar bone. This access can be used outside of a hospital, but can still only be used by an RN because the risk of a deadly infection wiggling up the catheter line is so high.

The ‘upgrade’ from a catheter gets rid of any permanent attachment to your body, and is useable by technicians that do not need to be RNs. Instead your body is augmented with access points beneath your skin, and the technicians 'cannulate' you with two needles to access your blood only during dialysis itself. But don’t think “Insert two blood draw needles… in my arm… for a few hours… eek!” No. Think "Insert two sewing needles… in my arm… for a few hours… ”

It is true, that after a few hours of dialysis with those needles… and a few more for the holes to seal… all you have left are impressive track marks running up your arm. You look like a ‘druggy’ but with different benefits.

Second, your schedule — is seriously impacted by the dialysis rhythm: in my case I do it every other day for about four hours. Plus time to get to the clinic, be wired into the machine, be unwired, make sure I am not going to pass out, and then the time to get back to my ‘normal’ life. In theory, you can work during part of this. But one of your arms is pinned by dialysis needles. The room can be noisy. Sometimes you cramp or have other symptoms. Most people just mindlessly watch TV.

Third, Drs. Kolff, Haas, Abel — and other great minds… never got dialysis to work. The papers, conferences, public announcements, and Google searches are all a deception. Machines with membranes are unable to replace what your kidneys do. They will not keep you alive if your kidneys fail. You need a more radical

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