Lana

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

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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

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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.

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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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FIVE HUNDRED

The thought came to me — during one of my sessions. I watched the pump of the dialysis machine spinning as it pushed my blood through the tubes, into the membrane, and then back to my body. Spin spin. Pump pump. Flow flow. The machine would do this for four hours and an amount of blood equivalent to two-times the amount of water in the patient’s body would be processed. The blood picks up new ‘dirty’ water from the body each time it cycles through. At least that is the theory around hemodialysis.

But that is not what is really happening. My blood (cleansed of undesirables) is put through a switchable manifold into the proper line to go to one of the twelve different patients I am supporting. Essentially, this is just a fancy way to do a two-way blood transfusion between me and that patient. Why do we need the middle men and machines?

The next piece of the puzzle — was to understand that pump: how do you buy or make a 'roller pump' (formally a 'peristaltic pump') since that pump seems to be necessary for the transfusion? A quick google search and some conversations with a college friend made it clear this was not an issue: I could easily get a ‘patient pump’ capable of the 500mL/minute maximum flow rate. To support a vampires flow rate would require a pump capable of 6L/minute, but that is only about twice as expensive. And the concept I was working on does not require that rate to begin with: it could easily be a oneto-one speed of transfer. The patient gives me their blood and I send it directly back — after wandering through the nooks and crannies of my cardiovascular system — with the blood moving at that 500mL/minute flow rate.

In less than four hours, a single patient and I would have exchanged blood. The patient would get kidney-clean blood to enable them to live and I would get… what? Payment? It would need to be at least a half-liter (a pint) of their blood for me to live

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also.

Who would pay — for dialysis with their blood instead of with cash? The answer seemed quite obvious: anyone that is not wellinsured or incredibly wealthy. Each dialysis treatment-session costs about $500. Over a year (150 sessions) that is $75K. The median salary in the US is less than that, so the cost of dialysis is more than the patient "is worth". And this gap will likely be for the rest of their life, or until they come up to the front of the transplant list and can pay $1M for the privilege of not spending $75K in perpetuity.

So at least half of the dialysis patients at my clinic can't afford to be doing dialysis except by the favors of the government, employment, insurance, or other unreliable sources. On any given day they could walk into the clinic and be asked “Pay your tab or leave” .

My basic concept — is offering to pay dialysis patients $500 for a half-liter of blood. Or even more simply: I am offering them their lives for a half-liter of their blood. The medical system is offering the same reward (brokering me) for $500 per session and a half-liter of their blood. I do get a cut of that $500 in my stipend, but definitely not a significant portion of the million dollars that the twelve patients gave the system.

The patient could sell their plasma (where legal) for maybe $50 per session, but they would still be down $450 to get their treatment. And I am not sure whether dialysis patients are allowed to donate plasma.

Too complicated — Maybe I should just buy the blood instead and store it? That would require spending something like $2K a week. That and the equipment would be a serious expense. And it would only help me: it would keep me ‘alive’ without giving me any reason to be. I can only truly live by enabling others to live.

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LANA

The US Army — accidentally provided a major part of the ‘home-dialysis’ solution. Blood transfusion kits are not available at the local CVS, so even after getting the tubes, needles, pump, and bandages that seem to be required to make this work, you need someone that knows how a non-hospital transfusion setup would function. And would trust it enough to try it out. On themselves.

That person was Lana: a combat medic for the US Army discharged about a decade ago. And now homeless. Our country has a serious problem with taking care of people we put in harm's way after we are ‘done’ with their service.

Lana would sporadically visit my clinic instead of the VA (or nothing at all I assume), and I started driving her home shortly after she showed up. She happened to arrive very late, so I was always done for the day at about the same time as she was. During the drives I started bringing up her in-field medical activities. Recounting this was traumatic for her, but I believe it was also cathartic, and she did it because she wanted to and not because I influenced her.

Over the next couple weeks, I learned she had done many field blood transfusions and although not thrilled by them, was certainly comfortable with them. Venipuncture (putting a needle into a vein) and cannulation (creating a ‘canal’ for the blood to flow through) are simply skills with a high-degree of risk associated with them. Lana was good at them from a war-time of experience.

In theory I should have been good also, but that was both not true and irrelevant. Not true because I never had to do it myself and had not picked up the skill. And irrelevant because Lana had to trust the process, and she was always going to trust herself as a skilled medic than almost anyone else.

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We used ‘El Toro’ — as the first medical bay for our first transfusion attempt. It may seem strange to do a transfusion in a car, but this was a very large and comfortable vehicle. It also had extensive power supplies due to several Goal Zero lithium batteries within its trunk. Further, I had made custom sanitary flooring and seat covers. Finally, we parked the vehicle in the Stanford parking garage in case anything went terribly wrong. Calling 911 might cause a gurney to wheel directly to our vehicle.

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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.