PROLOGUE : IRONY

In November 2020, I stopped drinking alcohol. Completely sober. Never drank again.

The irony?

In spite of the committed sobriety and lack of symptoms, I was terminally ill.

I was sober but dead.

PART-I

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?

November2020

My family has a history of alcohol addiction. For about thirty years, I avoided this problem through almost complete abstinence, but eventually I incrementally succumbed to decompressing with wine at the end of any very intense and stressful day. Ultimately that became every day.

I was blessed and cursed by “the best” of the family genes, which caused me to have few significant side effects no matter how much I consumed. I could work, play tennis, etc. the next morning without impact from the night before. COVID made the situation even worse, but the problem existed for years before the epidemic.

November, 2020, was a notable date: it was the month I went back to complete abstinence. This wasn’t easy and wasn’t the first attempt, but it finally happened. Given I had no physical symptoms of any problems, I should have dodged any medical issues.

April. 2021

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 Amasa Hospital. I was very sick and ultimately couldn’t move without help. My family drove me to the hospital. Is this Amasa Hospital?

December2020

For the last month I have been unable to eat. I am fasting, something I have done before, but I don’t seem to be able to break the fast. My family is worried and my sister is flying out from New York to visit.

April2021

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 can tell time is passing as I watch the slow rotation.

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.

Then they leave.

March2021

It has now been almost five months with no sustenance, and although I hoped my body would recover on its own, I can barely get up. Among other issues, I look like I am nine-months pregnant. And the extra weight is beyond my muscles ability to lift.

With the prodding of family and my doctor, I agree to be driven to Amasa’s Emergency Department (ED).

April 2021

I can’t move 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.

March2021

In the ED, the doctor does a “paracentesis” to me. This is a procedure that removes excess water from the abdomen (belly). For some patients, as much as 8 gallons (32 liters) or more can be removed. That is over 60 pounds, or more than most pregnancies. In my case it was just two liters. A large needle is stuck into your abdomen, guided by an ultrasound to look for pockets, and then the water is pulled into liter bottles.

At least that is what is supposed to happen. In the ED something went a little off and about half a liter ended up soaking my bed and clothes. The clothes being wet was not really a problem: I was about to give them up for a standard gown that was my new style for several weeks to come.

April 2021

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.

March2021

After the paracentesis and a lot of blood work, I was transported up to M5. The Stanford Liver and Kidney department is located on the fifth floor and the ‘M’ wing of Stanford Hospital’s newest building. Hence the nickname ‘M5’. M5 is somewhat unusual in that it deals with both imminent death (e.g. liver failure) and long-term care (e.g. waiting for a kidney transplant). In spite of being one of the scariest situations of my life, at the same time M5 has some of the nicest people I have encountered in my life. There are some bizarre rules and people take a lot of blood from you, but ignoring those aspects, it is nicer than most hotels I have experienced.

April 2021

“Do you know who you are?” A nurse or maybe doctor asks.

“I am Mark Fussell”

“What day is it?”

“I don’t know… I think it is in April”

“Who is the president?”

“I believe Biden is president, although I may have missed something interesting while I was ‘ away’. How long was I away?”

“Where are you?” the nurse or doctor continues, ignoring my question.

“I believe I am in Amasa 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?”

April 2021

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?

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?

April 2021

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 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 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 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 questions that matter to her and the Committee of Gods are: (a) will I obey the presurgery & 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.

HEMODIALYSIS History

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 access method is the trialysis catheter I had when I was in the ICU of Amasa. 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 hooked into the machine, be unhooked, 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.

Notes

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 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, having a 21 (out of 40) MELD score 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 Amasa, so she does not know anything is unusual about me… except for the story of catastrophic liver and kidney failure.

May

I am not allowed on roofs because in spite of being a ‘vampire’

I am not particularly coordinated, strong, fast, or anything special. When I am discharged from V5 and Amasa, I am in worse shape than I was before going into the ER in March, let alone the years before when I was fairly athletic. 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 to those who saw it… or saw me after it.

But I am recovering very quickly. My physical therapy sessions end after only three of them. I shuffle along faster with 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.

PART-II

RECOVERY May

I go to ‘second-bed’ at about 10 p.m. and wake at 4 a.m.. That combined with the rest from the four hours of dialysis seems to be enough for my body and mind.

Since I seem to have issues returning to my previous life, 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 may help make The Gods ecstatic when they want a ‘quid’.

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.”

“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.”

History

Inserting dialysis needles into your arm is painful for most patients. The needles commonly used for hemodialysis are ‘15-gauge’, which means 15 of them will fit into an inch diameter tube, 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 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’ providing blood to your arm is about 10mm in a 50-year-old). Returning to the needles, that means a 14-15 gauge needle is taking up about a third of the ‘tube’ of the fistula. 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 could 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?”), or would have to be carried. And in either case, someone needs to put them into your 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 pressure-bandaged to your arm (or leg) to plug the hole. This combined with either hand-pressure or a mechanical (plastic) pressure system will 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 close properly if anything is amiss.

An unclosed 2mm hole sprays blood into and then through the gauze very 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.

PART-III

Afterward

The dedication of this book doesn’t come close to expressing my appreciation and amazement at what the medical facilities, doctors, and staff of Stanford have done for me. Although I managed to walk into Stanford in March, I was apparently days away from dying. And then as far as I can tell, actually did. pass I tend to call it a ‘ coma ’ now, but that is not how I viewed what happened. That first team of Stanford doctors and staff brought me back to life. Barely alive, but clearly alive and on a “ can only get better… or die again” trajectory.

Two years later I was living as normal a life as I could with two failed organs, and I get spammed by a Palo Alto number. Twelve hours later an amazing set of surgeons spend the next twelve hours swapping my liver and adding a kidney. Someone lost their life, but that donor’s sacrifice plus the talent of the Stanford medical team gave me back mine… again. A week later, I walked out of Stanford with a lot more staples in me but in better overall shape than two years earlier.

As I write this, I am entering my third year of a new life. My biggest hope for readers of this book is for you to avoid following in my footsteps. Be scared of how horrible the experience can be and how amazing your life is without causing your body harm.

If you do follow a similar path, there is hope that is earned from your hard work, that comes from the talents of excellent medical facilities, and (unfortunately) that is just plain old luck. Be prepared for the work, live your life to the fullest you can, and appreciate the rest.