Hemodiealysis
Mark L. Fussell
Copyright © 2022, Mark L. Fussell All rights reserved. ISBN: 978-0-???
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DEDICATION This book is dedicated to Rebecca, my wife, who both took care of me during these trying times and continued to work excessively hard at a company that did not appreciate her. I love you. It is also dedicated to Maya, Katrina, and Susan who all provided support even when they had other things they needed to do. Additionally, C provided a lot of emotional support and for a while was the most optimistic person on my abilities and chance of living, which was a blessing. Thank you all. Finally it is dedicated to Stanford Hospital, doctors, and staff who dealt with a very diseased and sick individual that ultimately walked out of the ICU, through the exceptional M5 program (twice), back into his house, and ultimately back into the hope of living. There is no better collection of skilled individuals in any other hospital. Thank you for caring, applying your skills, and for my life. A special thanks goes to my illustrator, who has adorned all my books: Baird Hoffman (https://www.bairdhoffmire.com)
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PROLOGUE : IRONY In November 2020, I stopped drinking alcohol. Completely sober. Never drank again.
❦ Strangely, this did not make me feel at all well. To recover, I tried to water-fast for a few weeks, which I had done before with some success. This time though, I could not stop fasting without having unpleasant things happen. After months of getting more and more emaciated, where my wife had to help me escape the bathroom on multiple occasions, my eldest daughter “encouraged” me (forced me) to contact my longavoided primary care doctor. This was four months into the fast, March 2021. She told me to immediately go to the Stanford ER. So we as a family got into “El Toro” (the nickname of my family vehicle) and I entered the hospital where I would spend a month before hobbling back out.
❦ The irony? In spite of the committed sobriety, I was terminally ill due to alcohol destroying my liver. I was sober but dead.
❦ This book describes the medical treatment I received from Stanford Hospital, its staff, and associated medical professionals — and living a meaningful life in spite of many impediments.
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The Prank
1
Transplant Lists
7
Hemodialysis
13
Vampires and Slaves
17
Roofs
23
Recovery
27
Influence
30
Sirius Black
37
Phones and Watches
39
El Toro
41
Hemodiealysis
43
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THE PRANK The sun will rise — in a few hours… but Jerry is an early morning jogger. I am waiting by the picnic tables at Mitchell Park where I can see anyone who turns onto the dirt path… for him, Jerry will be headed to Peets for coffee… a daily ritual. I need a nap…
❧❧❧ I wake up in a room I never entered — There is a surfboard on the door. Why do I have a surfboard? Whirring machines are behind my bed. An analog clock is up on the far wall. And a pretty nice and large window is to my right. It looks out onto a view I have never seen. Where am I?
❦ Jerry rounds the corner — and I start jogging on an intersecting path. In a few moments we are very close, especially given these are Covid times. But Palo Alto has always been really good about masking, and we are both conforming to that rule. “How are you doing Jerry? This fine balmy morning…” “It is 34 degrees… are you from Minnesota or something?” “Everything is relative.” “Well, I pondered what you suggested, and I don’t think I can get you into that meetup. It may be a good cause you are pitching, but people don’t want to be pitched on good causes, they want to be pitched on big wins” “It will be a big win. We can eradicate homelessness. More people will be alive, and warm, and safe. They won’t be as rich as your people, but they will be a lot happier and probably more -1-
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productive. ” “I know, I know, but that isn’t what ‘my people’ want to hear. Or even think about. Now being the next in space or the first on mars, that makes them drool. ”
❦ We arrive at Peets — and both order “the usual”, which we didn’t need to say out loud. We are there every day when the doors open, and always order the same thing. “I wish you would reconsider” “I know, but I won’t. Maybe next time” “Unfortunately, I can’t wait”. The irony is lost on him. With a subtle motion, I knock over my scalding drink and Jerry jumps. I jump too, apologizing profusely. With my dialysis hand, I grab his hand as if to steady him. But my thumb nail also cuts into his wrist. It is a tiny scratch, but enough to open a small vein and let the blood on my palm smear into the opening. It connects with the blood he has received from our dialysis treatments, and the binding is reestablished. I apologize again, but this is just for show.
❦ Less than two hours later — I exit the 80 to Sacramento, the capital of California, which lies on the foothills of the Sierras. Driving before sunrise and away from the black hole of Silicon Valley is always very fast. As if the universe is encouraging me to leave (irony again). The reverse commute commonly takes three hours, but I may wait until sunset to help shorten it. Today I don’t have “my appointment” in Menlo Park, so I have a bit more flexibility in my schedule. -2-
I walk through the metal detector without issue: I long ago gave up all my jewelry, partially to match my public persona. No ring. No watch. No phone. I do carry a money clip as a memento, but simply place that in a bin for the belt. I am well armed, but not in a way any normal machine could detect.
❧❧❧ I did not enter this room — The room seems to be in a hospital, which does strike a memory. I came into a hospital recently. I went to Stanford Hospital. I was very sick and ultimately couldn’t move without help. My family drove me to the hospital. Is this Stanford Hospital?
❦ I find Nancy’s office — and wait for our appointment. My ability to predict traffic enables me to be about ten minutes early for our meeting. I wait patiently. Some things need time, and I have all the time in the world. But only for things that ‘age well’. Many things rot over time, so speed is essential. Hence the morning coffee-powered interaction. I focus on the digital clock behind the secretary.
❧❧❧ The wall clock is slowly turning — It is daylight outside, so the hand pointing at the 9 must mean it is around 9am. The clock has no second hand, and it is very far away, so the movement is hard to discern. But I am sure time is passing. A bit later someone walks into the room and stands near my surfboard. They have a tag, but I can’t focus enough to read it. They ask me to lift my hands. Then ask me to push on their hands. Then they push back on me. -3-
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Then they leave.
❦ “We need this legislation to go through” — I start with after slowly sitting down. Everything I do appears to be slower than normal, as if I am infirm from some illness. “Yes, I understand that. I am doing the best I can. But there are a lot of opponents.” “They are getting fewer. How many more do you need on our side? Who would have the greatest impact?” “Well, a lot of people would come along with Grace. I believe she lives near you?” “Yes. I have been reluctant to contact him due to a prior relationship. But that is a foolish weakness. I will follow up with him and we can meet again next week to review the progress. Are you available next Thursday? ” “I think so, but please call my assistant to confirm before you drive out here. ” “Phones hate me. I will be here, in case you are available. Otherwise I will get some waffles for breakfast. ” “Have a safe drive back. Nice seeing you”
❦ The 'wall' is still up — and I estimate it will take three hours to get back to Palo Alto or anywhere on the peninsula. So I do go get some toasty waffles. Sacramento has a lot of waffle shops, which may be due to the nearby snow. Somehow waffles help you brave the cold. I get the usual: pork belly and eggs on a savory waffle… praise the lard! I have not had to worry about what I eat for ten months -4-
now. There are some benefits. Actually, there are a lot of benefits, but there are a lot of losses too.
❧❧❧ I can’t really move very much — I think this is because I am weak since I don't see any straps, but I am not sure. I try to look at the whirring machines around me, but they are mostly behind my head. And there is something attached to my neck that feels strange when I turn my head. But I can turn enough to look out the window. The day seems beautiful, but that is common in the South Bay of San Francisco. The Santa Cruz mountains prevent fog from rolling onto us, and the Pacific peacefully sends a few pleasant clouds over our heads. The 70s is a common temperature this time of year. Wait… what time of year is this? It seems like it is near "the birthdays": my wife and I have birthdays in April. So is today April something? Hah! Maybe it is April first! This is a very elaborate prank on me.
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TRANSPLANT LISTS When I finish my breakfast — I head north to Paradise and Oroville. I visit Paradise for the reminder. My friends and family did not lose anything to the Camp Fire, but a friend in Napa lost everything but her husband and two cats to the Glass Fire. The fire burned through the area so fast that it simply 'trimmed the flora' and the hills are nicer than before the fire. More sunlight. More rattlesnakes. Very pleasant if you have the money and insurance to build back your home. But those less well-off became homeless. Next I venture over to Oroville and a tavern up by the dam. The parking lot is full of high-torque pickup trucks… and a camouflaged, all-terrain, golf cart. This is a different type of town from where I had coffee this morning, but there are similarities in religiosity, isolation, and xenophobia. The believers and beliefs have just diverged. I sit in the back corner booth viewing the whole restaurant and making sure I am visible. “A few months” meanders through my mind. “What would you like today?" the server asks me. “The Usual" I say with a smile. “Sorry, I don't know what that is" she says looking slightly annoyed. “I am hoping you will in time” I return with a bigger smile. “I would like an avocado and bacon hamburger. Medium rare”. An eyebrow is raised, but they simply continue: “What would you like to drink?” -7-
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“A ginger ale would be great… if you have it. Otherwise maybe a Coke or Pepsi” “Coke it is” I don't normally eat anything medium rare. But I am out of town and can take off a little bit of my mask if I am careful. Buying a round of beers would probably help to ingratiate me with the town, but that is a bit too conspicuous. It is very unlikely anyone will oversee the way my meat is cooked… although I should change it before it does become "the usual".
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“Do you know who you are?" — “I am Mark Fussell” “What day is it?” “I don't know… I think it is in April” “Who is the president?” “Me! No… just kidding. I believe Biden is president, although I may have missed something interesting while I was ‘away’ ” “Where are you?” “I believe I am in Stanford Hospital. Apparently in an ICU” “And why are you here?” “I think I was going to die. I was getting weaker and weaker for weeks, and finally my family drove me here. I thought I had a room in 'M5' but I don't seem to be there anymore. ” “Very good. You seem to be mentally recovering well” “So I am not going to die?”
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❦ 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? -9-
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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?
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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. - 10 -
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 - 11 -
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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 - 13 -
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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 - 14 -
treatment to stay alive. Fortunately, Drs. C, G, K, and other great minds _did_ get dialysis working. It appears to work the same as I described above. Same catheter and needles. Same schedule issues. Same result: unwanted things are removed from your body through your blood. But this successful version of dialysis does not use a bunch of membranes. It uses a bunch of ‘me’. I died while at Stanford. But I was brought back as something more useful than I was. And I am not the first. All the dialysis clinics throughout the world have at least one of me per shift. We process all those patients’ blood during our shift. We enable those patients to live normal lives outside that clinic. But we don’t live normal lives outside the clinic. We don’t live at all.
❦ I set up a morning meeting — with Grace at Cafe Boronne. It is a Friday, so the cafe is open. Since Covid, it has been closed on Mondays and Tuesdays, which is inconvenient since I enjoy coffee after my dialysis sessions, and Monday is the first session of the week. Dialysis takes up 15+ hours a week of my daylight hours, so the remaining time is very scheduled by me… apparently even ‘manically’ scheduled… like this is my last day on earth. Rhythms like coffee keep this innate mania a bit in check. “How have you been doing Grace? I know Martha took over after you ‘went on’, and your kids were going to Priori, but I don’t know what you have been up to since then. Are you still living off Alpine?” “Yes. Still there. The kids are grown, but we like the house, and it is good for entertaining. I am the angel investor for several companies, and the gaming and VR spaces are doing really well. I also represent the 13th district, so that takes a bit of time. ” - 15 -
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“Sounds exciting. Can I pitch a public benefit to you as state senator?” “I agreed to meet, and you are very transparent, so clearly ‘yes’. ” “I want to end homelessness. I believe this will save and improve lives. And the newly housed will be able to contribute much more effectively to the local economy … maybe even as gamers”. I say the last part with a smile. Grace has been in the game industry for decades. Never seemed to match her professionalism and personality to me, but people have layers.
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VAMPIRES AND SLAVES Dr. A comes by — after I get on the transplant list. “Congratulations Mr. Fussell” “Please, ‘Mark’. And not ‘Mr. Mark’, which seems to be very popular among the RNs” “Ok. Mark. You are now on ‘the list’… and I am here to discuss it with you. You appear to be mentally stable under stress & significant unknowns, are willing to do what the doctors tell you to do, and are a generally ‘productive’ (even slightly ‘manic’) individual. These were the prime considerations that we used to put you on that list. ” “I assume that and my general health” “Yes. Kind of. The list I am talking with you about is a different list. The liver transplant list is just a ‘cover’. You are now on the hemodialysis list.” “Isn’t that just for my kidney function until I get a transplant? I thought I was already getting dialysis?” “You are and aren’t. This will take a bit of imagination and acceptance on your part. Please keep any open mind for a few minutes” “Ok, I will try to hold off my questions for a bit” “You were admitted to Stanford ICU on March 28th. A day later, you passed” “Passed what?” - 17 -
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“No. Passed. Passed away. You never woke up from the ammonia spike.” “I seem pretty awake” “Yes, you are now awake… but not alive. On March 29th, Stanford decided you were a good candidate for the hemodialysis program. So you were moved to ‘V5’ and were brought back.” “I am ‘back’ but not alive?” “You are something different. Informally we call you Vampires. But you aren’t really much like the myth. The core characteristic is that you need human blood: you get the ‘nutrients’ you need to continue functioning from blood.” “That does sound very vampiric” “Yes, but in exchange you purify the blood similarly to a kidney. When you are hooked to a dialysis machine, you get other peoples’ blood, purify it, and return it to them.” “O….K….” “You do ‘net’ take some blood, but not a lot from any one person. And you can handle a higher flow rate than the patients, so in four hours, you can process the blood of a dozen people. If you take about 10%, you drain only about a half a liter. And we can give that back as saline without the patient being harmed.” “O…. K….” “So, as long as you do dialysis, you can function between sessions. And by doing dialysis, you enable a dozen people to live” “O…. K…. That sounds very fair and pretty logical. Except the ‘you are dead’ part. I don’t feel dead. The machines say I am alive. The tests say I am alive. I act like I am alive.” - 18 -
“Yes. The machines and tests are lying. Try not to breathe for a bit” “Like… hold my breath?” “Yes, hold your breath… until you _need_ to breathe”
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“Well, that is a small and simple task” “I realize it is not, but I just want California to follow in Berkeley’s footsteps and not prevent homeless from using public/government lands to live. We will do our best to get them off it, but on their own terms. We could use money for that, but that is a different pitch.” “So you want me to vote for bill 2022-0401?” “Yes, along with as many of your friends as possible” “Ok. I will work on it. And will call you if I need some details.” “Call, and I will come ASAP. Thank you.”
❦ I drive to Home Depot — to talk with David about a mass purchase of siding, lumber, bolts, etc. My goal is to make twenty ‘very small’ houses. I recently acquired a light-industrial unit off Old Middlefield, and believe we can build twenty units in about a week. Probably two weeks, but the target is one. There is no problem with the order, and the price is fine: about half of what Virginia gave for the units, so the other half can be used to pay for the labor involved. If we get it done in two weeks, that will be fine. We might sell some of the units to defray costs, but the bulk will be donated: given to people living in tents or worse.
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❧❧❧ 30 minutes later — I give in and start talking. “I don’t need to breathe? Except to talk?” “It may mentally help you talk, but you don’t really need to do it for that either. It appears you communicate through suggestion. More by visual contact than anything else. There may be some telepathy involved. Either we don’t understand it yet, or it is above my pay grade. ” “You don’t understand the ‘things’ you are using to keep people alive? That is keeping tens of thousands —” “hundreds of thousands” “Ok. Hundreds of thousands of people alive. So there are tens of thousands of vampires wandering around?” “Yes” “And you don’t understand them?” “Yes: we don’t understand them. But they appear to be pretty ‘human’. So possibly somewhat safer than AI. You have seen the Matrix?” “Well, that went badly for humanity, but rampaging vampires doesn’t seem very good either. ” “No, but we do test you and decide whether to go forward” “Where backwards is to kill me?” “Possibly… but living dead don’t have many rights … including the right to complain. ” “So I am a slave?” - 20 -
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ROOFS It is noon, so I head to dialysis — My clinic is in Menlo Park, almost within the Meta campus. I was on Facebook when it first came to California, but got off it when the social value of the social network became very suspect. Dialysis patients get hooked up to a hemodialysis machine using either their catheter or the two dialysis ‘sewing needles’ described above. I used a catheter for about six months, but progressed to direct artery access, which looks the same as a fistula. The flow rate can be higher with the needles, so I can support all the patients in my shift. For the first six months I needed to have another vampire (Susan) with me, but now I can go it alone. My machine is different from everyone else’s, but that isn’t visible to anyone who works in the main room. There is a technician controlling flows between patients and me, so people get their own (cleansed) blood back. I feel like the RNs know something is unusual, but they keep their concerns and questions to themselves. Josephine ‘wires’ me up, and for the next four hours I am trapped. Dialysis can be very draining for normal patients: cramps, sleepiness, etc. It is draining for me also. I commonly need to sleep for most of it. Given my dialysis shift starts at noon, it is somewhat ironic. I need to sleep for a while at night too, so maybe I am just half-vampire?
❧❧❧ “No, you are not exactly a slave — but you are also not free. From now until you wish to die, you will need to do dialysis with a Stanford-approved clinic.” “Can’t I just bite people on the neck or something?” “You can try, but there isn’t any evidence that would work. And you would likely end up dying in jail” - 23 -
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“So, as long as I do dialysis, you will help me to continue to exist?” “Yes” “No other quid-pro-quos in this contract?” “No, but we might like your help at times” “Yes… master. Am I really going to say no to the Gods?” “I suspect you might, at least sometimes. That is really up to you… and how happy you want your gods to be ” “Ecstatic?”
❧❧❧ I return to M5 from the ICU — except now I am part of the clandestine V5 clinic (an ‘M’ contains a ‘V’ hiding in plain sight). My diet changes: I can now eat more kinds of foods. This is all just practice for my cover story; I don’t actually digest any of it. But to be compliant, I should avoid foods rich in phosphate, never eat foods that could contain bacteria, keep my sodium intake low, and so on. Basically standard practices for a liver and kidney transplant patient. A living person’s biome needs to be balanced, and without a liver and kidney monitoring and adjusting to what you are consuming… tests, diet changes, and medications take their place. It is critical that I understand all of this to keep my cover, especially because one of the addiction-recovery meetings I go to focuses on liver and kidney issues. For me to attend, I need to know a bunch of tests, activities, and experiences that an end-stage patient would know. This is beyond just dialysis, and includes regular testing of all kinds of things. Some of these tests collectively produce a MELD (model for end-stage liver disease) score. This determines - 24 -
your priority for a transplant, so my score has to match needing dialysis, but not be so high that a transplant (or death) would be imminent. I pick 21 as my normal MELD score, and my test results are set up to match that. In California, a 21 (out of 40) means it will take years before I am offered a transplant. The layers of lies are to keep vampires relatively secret. My normal doctor (Dr. J), is outside Stanford, so she does not know anything is unusual… except for the story of catastrophic liver and kidney failure.
❧❧❧ I am not allowed on roofs — because — in spite of being a ‘vampire’ — I am not particularly coordinated, strong, fast, or really anything special. When I am discharged from V5 and Stanford, I am in worse shape than I was before going into the ER in March, let alone the years before when I was in pretty good shape. I get up and move very slowly, and I can’t get up at all without help if I sit on a couch or the floor… or fall. I can make sudden movements sideways, when I had no intention of doing so. I am not a ninja vampire. This is common for people who spend a month in the hospital: your body atrophies every day you spend in that comfortable bed. So my physical condition is consistent with my hospital stay. If I did fall off the roof, a lot of inconvenient questions would come from to those who saw it… or me after it. But I am recovering very quickly. My physical therapy sessions end after only three of them. I shuffle along faster in my walkers: I have both two-wheeled (for inside) and four-wheeled (to go the distance and bring a chair to boot) walkers that I need less and less every day. Hemodialysis is very draining initially, but within a month I can drive myself to the sessions. My family is freed from watching and helping me 24x7, and they can get on with their lives as I get on with mine.
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RECOVERY I have a lot of free time — outside of the dialysis sessions. Stanford is paying me a stipend to be part of their ‘hemodialysis program’, and it is sufficient for my monthly expenses, even in Silicon Valley where the rents are exorbitant (see accounts like ‘The Slums of Palo Alto’ for details on that). I am allowed to work, teach, play, or do anything I want — as long as it does not blow my cover. I enjoyed the work I did before becoming sick, but since recovery it is very hard for me to focus on it. I can’t seem to sit still without dozing off. Watching TV makes me fall asleep, and then I wake up at midnight ready for a new day. I guess that would be within character, but I prefer to take advantage of daylight as much as possible, so my hours become quite regular: I go to ‘second-bed’ at about 10PM and wake at 4AM. That combined with the rest from the four hours of dialysis seems to be enough for my body and mind. So I begin down very new paths for me: over time I learn about building houses, politics, professional driving, farming, and more. These are part of my normal life, and are known to all my friends and acquaintances. I also have a large collection of ‘hobbies’ that I don’t speak of normally. My hobbies help make The Gods ecstatic when they want a ‘quid’ or ‘quo’.
❧❧❧ As the weeks and months — go by, I more than recover. My sessions with Dr. A occur every other week in the guise of a blood draw test. They are short, but can be insightful. “How are you doing this week Mark?” “Good. I still carry a cane in case I need it, but I put all the walkers into storage. I walked about a mile around Lake Elizabeth with my sister. It was slow, but I only took a few breaks.”
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❧❧❧ “My sister went back to New York, but before she left we took a hike up St. Joseph’s in Los Gatos. I also walked around the Botanical Garden in San Francisco with my family.”
❧❧❧ “I started playing tennis again, but it doesn’t seem to be any effort at all. I was pretty good at tennis before, but now I am not getting winded at all. I could play all day” “That is excellent Mark. Your recovery has been almost miraculous. Most vampires have a long recovery timeline and many never become particularly strong. Immortal, yes, but not particularly notable otherwise.” “Any new research on whether I can just bite people in the neck and forgo the whole dialysis thing?” “Above our pay grades” she says with a smile. “See you in two weeks”
❦ I am now well beyond recovery — and can do things I could not before. It is possible this is due to being a vampire, but it may also just be because I can seriously focus and can repeatedly fail with limited repercussions. I did chop up my hand pretty badly with a d*** handheld router, but V5 repaired my flesh and my healing abilities transformed the nasty injury into train-tracks of scars up my left hand. Apparently my body thinks healing is ‘just enough’ to function vs. making me pretty. I need to get some of that ‘glitter’ lucky vampires have. The first ‘interesting’ ability I discovered was when studying my wounds after dialysis. The dialysis needles are removed at the end of the session, and you now have two holes into your blood stream. Unfortunately, that blood stream finds those holes a viable direction to travel (whether patient or vampire it is the same at the end of a - 28 -
session). So the dialysis technicians ‘plug the holes’ with a lot of gauze and tape. After a few hours, the holes seal and you can take the pressure-bandage off. Unfortunately, it is possible to miss the hole with the gauze. If this happens, blood starts spurting everywhere. This is a major reason dialysis patients have to wait after their session: to make sure they don’t spray their windshields from the inside when they drive home. The first time this happened to me, I looked at spraying blood in a bit of horror. I wear a short-sleeved shirt for dialysis, so the blood was just shooting down my arm (the needles are aimed ‘upward’ when inserted) and not really harming me. But getting bathed in blood is a bit disconcerting at first. The nurses simply cleaned me up, found the right spot, and tried again. The second time the spraying happen, I intensely focused on the blood. This was a bit risky because I have previously passed-out when concentrating intensely on wounds, but this time the result was very different. I could ‘see’ the blood a bit more vividly than my eyes were really seeing it. Or at least, more than my eyes previously would see it. It was as if it was glowing. This was interesting, and a bit psychedelic.
❦ Beyond seeing blood — by focusing on it intensely, I could move it. Not very far, and not very much (no elevator scene from the Shining) so it wasn’t clear what use this would be. But I still found it fascinating. It was as if I was playing with rain-drops, except they were a deep red.
❧❧❧ “Good morning Dr. A” “Good morning Mark” “I can see and move blood” - 29 -
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“Well… yes… it is a visible, non-toxic, liquid. But I am guessing you don’t mean that?” “I can see blood even in the dark. I don’t need light to see it. I can even see it beneath skin. Apparently lead, wood, and concrete get in the way, but skin does not.” “Well, that is unusual, but not unheard of” “Other vampires can see blood?” “Yes. There are some abilities that some vampires have. They aren’t very common, but they are also not unique.” “And seeing and moving blood is one of them?” “Moving blood? Without touching it?” “Yes. I can make my blood move. Not very much of it, but I seem to be able to control more and more as I practice. I have not tried moving other people’s blood” “Interesting…”
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INFLUENCE I started driving for Lyft — after about 9 months from being discharged. There were several impetuses: I like driving quite a bit and am a decent navigator in the Bay Area; my vehicle is very comfortable for both the driver and to infirm passengers — I know the later because my sister, wife, and daughters would drive me around in it when I was first discharged; and finally, there were too few ‘paratransit’ drivers for the people that did dialysis with me. I was never an official paratransit driver and vehicle (no wheel chair lift, for example), but I understood the needs of infirm and post-dialysis patients. I also had nothing much to do early in the day, so I drove both early and afternoon (post-dialysis) shifts. During one of the after shifts, I encountered another ability. While I drove Sandra home, I suggested she try a Mexican restaurant (“La Fonda de Los Carnalitos”) in Redwood City. It was an innocuous suggestion, but two days later I found out she tried the restaurant. That same night. In spite of her saying she was having fried chicken for dinner during that drive. Nothing incredible, but it seemed very unlikely to be just a coincidence. I tested this out with more (good) restaurant suggestions, and every time ‘my patient’ and rider would eat there that night. Very strange. Didn’t work in the morning though, so the impact was limited.
❧❧❧ “I can influence people” — Dr A. is dressed fashionably [[in …]] as always. “Yes, Mark, you can have a major impact to the world, especially given how long you will be with us. Is that what you are referencing?”
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“No. I can my cause my patients to do things… immediately… and even sometimes silly or out of character actions. I suggested ice skating at Winter Lodge for exercise, and met the patient on the ice at the very next public session. I recommended visiting the Schulz Museum in Santa Rosa, and found out the patient had made the several hour trip the next day. Suggested Yosemite, they visited over the weekend (this was after Friday’s session). I am now being very careful what I suggest, and adding lots of caveats (like ‘in the summer’) to prevent messing with their lives. ” “Interesting…”
❧❧❧ Stanford would like you — to go to a different dialysis clinic” Dr A. says at the next session. “OK. Why?” “We can discuss that later. Can you go to the San Carlos clinic for a while?” “Sure. Since I stopped using the catheter, I am not as nervous with new technicians. Before it was pretty scary when a different RN would hook up and clean the catheter. That direct connection to my heart is a little too powerful. Better than the neck catheter though” “You realize you are dead right? What could they have done to your vestigial heart?” “I didn’t say it was rational”
❦ A number of members — of my addiction-recovery program are now deceased. These are people who had kidney and liver failure, and were either patiently waiting for a transplant or already had a transplant. A liver transplant is no guarantee of life. A lot of - 32 -
things can go wrong. The body can reject the liver, and then you need a second or third one to get one (if any) that are accepted. Kind of like cats: sometimes they just don’t like you and you need to get some more until one is a match. The body can be too traumatized by the transplant and die from the operation. This is a real problem because you are ranked higher in priority the sicker you are. So generally the most sick get transplants first. It is like playing chicken though, because if you get too sick they won't do the transplant either. The body can simply get terribly ill due to the drugs you need to take post-transplant. To prevent liver rejection, a patient takes immunosuppressants. That is: the drugs _turn off_ your immune system. That is nice and friendly for the newly invited liver, but is also an open invitation to many uninvited bacteria and viruses. Over time the immunosuppressants are reduced, so the risks get reduced, but they do not go away. Death is something I already experience much more of since the hospital, and it will only get worse over the upcoming decades. I wonder if Stanford will ‘cancel’ me if I look too young?
❧❧❧ “We would like you to go to Sacramento — for dialysis” “That is a bit of a drive doctor. I can do it, but we are talking several hours of overhead” “It should only be for a few weeks. And it would make the gods ecstatic ” I meet Nancy a few days later, and sporadically help her get home after the sessions.
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❦ “There is a bill ‘2022-114’ — that would be very bad for Stanford” Dr. A says in her office. We always meet in person. It is much less tiring for me than the concentration I need during a zoom call. Telephones are even worse: I should be able to vocalize, but I have lost the coordination between my lungs and vocal cords. The slight telepathy (or whatever it is) with visual contact is a crutch that helps me a lot. “OK. That is unfortunate. And… ?” “We would like you to help kill it. Nancy is a proponent and major influencer in the state senate. We would like you to convince her to reconsider her support of the bill. It would make the gods ecstatic”
❦ The bill is killed — after a few weeks of interactions with Nancy during our drives. It is slow because I am worried. Worried Nancy realizes what I am doing. Worried someone else will grow suspicious. Worried I will be exposed and likely ‘canceled’. It is also slow because I don’t always drive her home, and don’t really have any good reason to meet up with her otherwise. But slow and methodical seems to do the trick. The gods don’t say anything, but I am scheduled back at my normal clinic. So they must be at least happy.
❦ Inserting dialysis needles into your arm — is painful for most patients. The needles commonly used for hemodialysis are '15gauge', which means 15 of them will fit into an inch diameter, or each is about one-fifteenth of an inch in their outer diameter. For metric people that is a bit less than 2mm. I have heard of patients that use 14-gauge needles, which are more than 2mm. This is big enough that it is quite difficult not to flinch, and I regularly fail in - 34 -
spite of the lack of actual injury. I commonly chat or play music to distract myself. A matured fistula used for hemodialysis is normally about 6mm, so a bit larger than a major vein (the 'great saphenous vein' returning blood to your heart from each leg is 2-4mm) and a bit smaller than a major artery (the 'femoral artery' in a 50-year-old is about 10mm). Returning to the needle, that means a 14-15 gauge needle is taking up about a third of the 'tube'. Presumably the other two-thirds are to make sure your arm does not fall off due to gangrene. In my case, I have a bit-better-than-normal sized fistula (8mm) and given gangrene is not an issue, I can use quite a bit bigger of a needle. But this would be a bit too conspicuous since needles are physical objects and would need to be in inventory ("do you have any 8mm / 2-gauge needles available?") and someone needs to put them into my arm. Not a good way to keep a vampire under cover. Instead, I use normal needles and the machine lies about its flow rate. The 15-gauge needles in my arm are used by the dialysis machine to pump huge amounts of blood through my body at a much higher pressure (flow rate) than normal. This is equivalent to having larger needles and enables me to support dialysis for a dozen people during the four hour session.
❦ Removing dialysis needles — from your arm is less painful but more problematic. The problems arise from having two 2mm holes in your body, that have been there for as much as four hours. Your body does have a desire/ability to close these holes. But at the same time, your blood stream has a desire to take advantage of them: they are like two holes in a dike and are the "easy way out" for the blood. For a fistula, the dialysis needles are taken out in "reverse" order: the downstream needle (closer to returning to your heart) is taken out first and covered with _a lot_ of gauze and then pressurebandaged to your arm (or leg) to plug the hole. This combined with either hand-pressure or a mechanical (plastic) pressure system will - 35 -
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enable the body to close the hole without the blood streaming through it getting in the way. The second needle is done the same way, but (for me at least, post-dialysis when my blood has been replenished), this one has a lot more pressure on it and is more likely not to be closed if anything is amiss. An unclosed 2mm hole sprays blood into and then through the gauze quite quickly. Then down your arm. Onto the chair, floor, neighboring patient, helpful RNs, and so on. The solution is simple though: be like the little dutch boy and stick your finger into the dike… until a technically savvy nurse with a lot more gauze can come and help. As mentioned above, this has happened to me multiple times, and by just using the 'dutch method', I have managed to live through all of them [cough].
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SIRIUS BLACK The amber light — from the streetlight is casting a glow that makes the hedges look black. “Black on black” would be hard to see, but that is not the spectrum that I use for this kind of task. Earlier a family of raccoons wandered by in search of water, fish, trash cans, or whatever their nightly need was. A skunk ventured right by me, but I didn’t move and Pepe Le Pew did not notice me. I have been sitting here for a couple hours, hoping to see the runaway in what may be their periodic trail. I am sure they are nearby: I just have to catch them mid-stride. Maybe five feet would be close enough, so I continue to ‘recline’ into my shrubbery. I need a nap
❦ A hint of red — turns the corner onto Bryant by the bridge. Part of the difficulty around the task is that this path is for bikes only, so you can’t just cruise back and forth in a car. In a car you have to skirt around the poles (bastions) by shifting a couple blocks and then coming back. But in that time, the target could have wandered away. And being actively on-foot is likely to scare the quarry as well. So I just sit and watch as the faint red gets closer and closer.
❦ Three hours later — I drop Sirius Black (a cat… but pitch black, so they at least got one thing right) at the front door of the Waverly house. Sirius spent the night with me in a cage in ‘El Toro’ (my car, which snorts like a bull when you turn it off) given I thought it a bit rude to ring the doorbell at 3AM. Rose greets Sirius with open arms, gives me a kiss on the cheek, and I head off to my morning coffee routine. I have done about one lost pet a fortnight since my discharge, always based on postings on Nextdoor that are not resolved within a few days. Most pets are just opportunists taking a little trip into - 37 -
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the world, but some get a bit lost and another ‘night prowler’ can relatively easily return them home. The pet return program is both a public service and good practice for other stealth operations.
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PHONES AND WATCHES My problem with phones — became apparent about a month after discharge. The hospitalization and preceding sickness scared my mother and sister significantly. So I committed to check in regularly… by video or phone. At one point we were having bandwidth issues during a video call, so I turned my video off. The conversation abruptly ended to be replaced by several repeated “Are you still there?”. I turned video back on, and continued my (choppy) description of my week. There were hints prior to this interaction of an issue: for example when my mother would miss things I said when I was looking away from the screen, or when I would try to ‘check-in’ while in a voiceonly meeting from my car and they would ignore my comments. But these were sporadic enough to be explicable other ways (like simply me not speaking loudly enough). The video-toggle interaction was a blatant confirmation that audio-alone would no longer work for me. From that confirmation point onward, I stopped carrying a phone (even a smart phone) so I would avoid being in a voice-only situation or seem like I was ignoring calls from important people. Instead, I ignored calls from everybody, but made up for it by ‘just appearing’ as soon as possible. This behavior also improved my social interactions: I was always intensely focused on the current situation and had no phone (or watch) to distract me.
❦ I had a special Apple Watch — to support my liver disease cover. Wearing a body-state monitor and alarm after discharge was very common among Stanford patients, and a smart watch could do this quite well. A normal Apple Watch uses multiple LEDs and photodiodes (light sensors) to look at your blood flowing underneath it. This can - 39 -
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see your blood oxygen and your pulse by lighting variations. Given my blood barely moves except when in dialysis, an off-the-shelf watch would not give ‘good’ numbers. But V5 provided a special one for cover. It is more like a screen saver in that it just generates results based on an algorithm based on an inputted ‘healthiness’ level. Reminds me of ‘Flying Toasters’, except for a less-fun pulse graph. Still definitely interesting to watch: I even sent screen shots to my family. None of which were real.
❦ In spite of all the effort — into the technological watch hoax, after getting the fistula I couldn’t wear it. If you get a fistula, you can no longer wear any restrictive jewelry on that arm, including rings and watches. It may be that the fistula diverts a redundant blood supply, so if you pinch the remaining one you are effectively suffocating the cells in your hand. This causes minor problems like gangrene. I could wear the watch on my right wrist, but that is unnatural for me. Further, I use my right hand to do things like drill steel, and the magnetic watch band very much enjoyed surrounding my wrist with sharp dust shards. Although amusing, this was a bit socially awkward to explain. So the watch migrated to my pants pocket as a pocket watch for a while… and now is displayed prominently 24x7 on its charging stand. Like a tiny wall clock.
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EL TORO I drive very quickly — when the roads are clear & empty, and fairly slowly when they aren’t. On local roads I commonly drive exactly the speed limit. This appears to annoy people a little: they apparently want to run over neighborhood kids at 40 mph. But given ‘El Toro’ is one of the biggest non-truck vehicles in existence, they can gripe at it all they want as it enforces local traffic laws. On freeways, in the middle of the night, the situation is different. It is possible to save hours each week based on how fast you chose to drive when hundreds of miles are involved in each trip. Because I can’t use a phone or fly on planes, I commonly need to drive to destination as far as 900 miles away (Seattle, San Diego, Salt Lake City, etc.) although most trips are a third of that. I am also very timeboxed due to the dialysis appointments, which are only 40 hours apart. Saving 10 hours on 1200 miles of travel is critical to being functional let alone effective. This is not a new vampiric trait though. I crossed from Philadelphia to Los Angeles in 30-some hours when I was 18. That is about 3000 miles depending on the route you take. Back then I thought my time was very valuable, but now I know it is.
❦ ‘El toro’ is my bat-mobile — I guess it should be named ‘el murciélago’, but I acquired it before the transformation. The name is from the grunting noise it makes when the air suspension releases. It is a fantastic vehicle: I can transport 6 people or 10-foot 2x4s completely inside. And 12-foot pipes in jousting mode out the shotgun window. And I commonly carry a pretty large (almost 3 x 4 x 3 feet) dog/animal crate, to aid in pet retrieval. The cage is for my dog ”Rorschach”. While in the hospital, my wife offered me the incentive of getting a dog when I got better. The idea was that it would motivate me to walk Rorschach, which would - 41 -
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help my physical recovery. And mentally, I would have to take care of Rorschach despite how badly I felt. The show “After Life” has that second type of dynamic: a dog’s existence keeps the main character alive. So I decided to get a Belgian shepherd from a particular breeder, named it Rorschach, figured out a vet and trainer, and acquired a cage for its initial home. And then I died, so only the cage remains of that idea.
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HEMODIEALYSIS Nancy marked the end of several things — Not of using my abilities, but of some wavering I was having around them. Nancy was a nice person, and just doing her job (representing her constituents) as best as she could. The bill we just shot down would have enabled more of her constituents to have dialysis, at a risk of medical complications. Deciding amongst those tradeoffs should be done in a public forum, and not in the smoke-filled (metaphorically) Lyft trips with Nancy. It is true that the bill put us vampires at a premium (more dialysis… more needed vampires), but I believe that could have been addressed in other ways if Stanford had not decided to crush the bill. Based on the Nancy assignment by Stanford, I decided to change a number of things. First, I stopped telling Dr. A about any new abilities. Second, I standardized on ‘Only use on ass****s’ principle: I try to actively avoid influencing or harming anyone that is not an ‘ass****’. Especially if I don’t consent to the goal, or just can find an alternative approach. Third, I started my v-wan (vampire widearea-network) project.
❦ As Dr. A and I discussed, — there are tens of thousands of vampires / slaves. But I know less than a dozen. How is that possible? My guess is that the hospitals and clinics do not want us to know each other. It could be we are too valuable and they don’t want us negotiating a better contract or getting poached. As it is now, I make Stanford happy or I don’t exist. I have no idea how to contact someone at the Mayo Clinic or Cedar Sinai to get into their ‘V5’ equivalent program. The hospitals may even have formal relationships barring poaching. Google, Apple, and others conspired with each other to prevent competitive wages… until they were caught and paid several hundred million to avoid going to trial. We vampires are like employees who have life-long non-compete clauses. Or possibly more descriptively, well-treated slaves. - 43 -
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❦ The V-Wan project — started as a virtual meetup: just a Meetup listing containing Zoom-based get togethers. The meetup was titled Hemodiealysis, where the misspelling was intentional. But otherwise, the details sounded normal. It was for patients in hemodialysis to discuss their physical and emotional problems and needs. [[todo]]
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ABOUT THE AUTHOR Mark L. Fussell lives (or lived) with his wife Rebecca, and two daughters Maya and Katrina, in Palo Alto, California. He makes a living through consulting for companies including Apple, Intel, Sony, and HP. He makes a life through the loving relationships he has with family, friends, and even mere acquaintances. He was a little strange before this adventure, and now he is even more so.