Soon after I woke up from a coma in 2021 I was told I needed to get on a liver transplant list. When I was originally in Stanford, they were treating me with oral drugs and food. Needing a new anything wasn't brought up. Whatever happened subsequently, my body was clearly in much worse shape and it seemed the primary treatment was to get a transplant as soon as possible.
There are a lot of hoops to jump through to get on the liver transplant list for a hospital. There are a limited number or organs available and it is not guaranteed that you will be listed _at all_. The hospital can choose whether to list you: the hospital is agreeing that if an organ is available they will do the procedure. And if you seem a high risk of failure (but are not in imminent death) they can defer or even reject you. Given that it seems you will die without a transplant, this is a lot of power being wielded over you.
Hospital are different and the availabiity of organs is different based on UNOS regions. This is just my experience with Stanford in California.
Before going into the process, you should know you _may not_ need a transplant to stay alive. At least I did not, although I never recovered enough that a transplant wouldn't help. But other did not get a transplant and recovered so much they never needed it: it was no longer a good treatment of remaining symptoms.
This isn't to discourage you from doing what is needed to get on the transplant list: all the hoops will likely help you to get in better health. But just to possibly temper that 'I will die' aspect anytime something foils you from getting on the list. It can be stressful but ideally isn't overwhelmingly depressing.
There are several aspects to getting on the transplant list at Stanford, which are likely similar to what is require at other hospital. Note that the requirements within these aspects is from a patient perspective: for many things I am guessing on the details based on my own interactions and annecdotes from other patients. A lot of the true details are opaquely hidden behind a ‹Review Panel› (or what I call the ‹Panel of Gods›).
The aspects fall into the categories
When I went from taking pills to possibly getting a transplant, I went from having a significant number of blood and other tests done to me to having a battery of procedures that needed to be performed. These included:
The goal of the physical review is to figure out what state you are in regarding:
A major aspect from this is treating symptoms that can improve your health either independently of the transplant or to handle the transplant. An example I did not have, but is discussed quite regularly in support groups, is liver-related cancers. If these can be controlled, you improve both your current health and your success rate for getting a transplant. An example I did have was getting into better physical shape (e.g. improvements to cardiovascular capacity) so I could better handle a transplant.
The psychiatric review is one of the more nerve-wracking aspects of being evaluated. The physical review is purely factual and independent of your ego: you can't mentally change what an X-Ray looks like. Psychiatric review involves people questioning your historical behavior, your current state of mind, and your behavior going forward. The amount of disclosure required for this can be very difficult for some patients. There are also a few especially touchy areas: chemical abuse, psychiatric conditions like severe depression, and physical care.
I believe you can talk honestly about all of these issues if you are willing to do the work to address them sufficiently. Note that this impression is "I believe" based on my interactions with my reviewers, which ultimately worked out. Different programs or patients could have very different experiences.
By the time I was considered for the list, I had been completely sober for about six months. If I hadn't been, I believe they would have required a subsequent period of six months with maybe sporadic PEth testing.
Beyond being sober for at least six months, Stanford required proof that I would continue to be sober. See Proving Sober for some of the details around that continued proof.
I believe the critical aspect of reviewing a patient's psychiatric condition is to:
Where chemical abuse has a bit of a stigma (given chemical usage may have helped cause the condition), other psychiatric conditions simply need to be understood well enough that the patient is stable both before and after the transplant.
I believe there is some amount of review of whether a patient has a healthy diet, weight, exercise, dental care, etc. You need to be in as good a shape as possible before transplant and need to have habits that will help you get back in reasonable shape after the transplant so the outcome is as good as possible. I am not sure if this impacts being on the list, but may factor in somehow.
The better the support environment around a patient, the better able they are to deal with the physical, occupational, and mental hardship of the transplant. I don't believe you can be excluded from the transplant list based on missing family support, but Stanford definitely strongly encourage both you and any available family to commit to leveraging and providing that support. In my case, family members were contracted to provide aid and I was contracted to accept that aid (even against my will).
One of the more subtle or covert aspects of listing review is patient compliance. The more a patient actively refuses to comply with medical team requests, the lower their chance of getting listed. Or I believe this is the case.
If you need to be cajoled it is probably a lesser penalty. Asking for explanations or alternative possibilities should not be penalized at all. Just realize you may never really understand why something is required of you. The more they have to convince you the less compliant you are being.
Somewhat like the army, if you are asked to "Jump", the ideal response is "How High?" or just to jump however high you can.
Getting on the list goes through multiple stages. Ultimately there are four possible major states:
In my case, I was deferred multiple times. Being deferred is very disheartening, but each time it is with an explanation of what else needs to be done. In some cases it may just be a test is still remaining or you need to find a community psychiatrist still.
I was discharged from Stanford after the liver and kidney transplant with a new Drug Regimen that had no overlap with my treatment regimen for liver and kidney failure. The new regimen included more drugs, that were tuned more often, and were taken at more times of the day. There were now more than a dozen drugs with five potential times they needed to be taken.
Fortunately these drugs were somewhat familiar to me from other people's descriptions and were thoroughly described by Stanford's Pharmacist both verbally and in literature. They were described to both me and my family in case I needed help maintaining the regimen.
Overall the drugs in the regimen falls into several categories:
This regimen was conveniently itemized as four pages worth of drugs: with dosage, regimen, constraints, and picture-augmented pill descriptions. The descriptions are very important: you need to take the right pill every time, and because there are more than a dozen scripts many of the pills look similar and the count of them can be overwhelming.
The following sections work through the categories
First there are the anti-rejection drugs. For me these are primarily Prograf® and CellCept® (or tacrolimus and mycophenolate mofetil by their generic names). It is common to use the brand name of drugs even when you are prescribed the generic. The brand name tends to be catchier, more familiar, and easier to say. But the pharmacist has an even catchier name for Prograf® and CellCept®: Batman and Robin. Tacrolimus is like Batman. It will get rid of those nasty foreign-organ attacking cells with the latest in technology and as expediently as possible. But Batman is bit abusive when dealing with your organs, so you don’t want him around too much. Especially new kidneys can be overwhelmed by Batman. So you balance Batman with a bit more sensitive of a superhero, mycophenolate mofetil. Robin is not as effective but has fewer side effects. It is likely I will be on the Batman and Robin duo of drugs for the rest of my life.
I have a bonus anti-rejection drug called Prednisone that is a corticosteroid (or just ‘steroid’) but I am only on it for two days. Maybe that makes it The Flash?
The next set of drugs are anti-infection drugs to help my body make up for the havoc Batman and Robin are doing to my innate immune system. There are three types of infections that need to be prevented or controlled by the post-transplant drugs: viruses, bacteria, and fungi. Many of the controlled pathogens are present within your body in trace amounts, which causes no harm to you. But when your immune system is suppressed the pathogens can dramatically multiply and that causes your body harm. Some of the anti-infection drugs were developed to treat AIDS symptoms, where HIV similarly weakens your immune system.
Following the anti-infection drugs are miscellaneous drugs that prevent heartburn, reduce the chance of blood clots, thin the bilirubin coming from the liver to the stomach, reduce my potassium, and supplement my magnesium levels. These miscellaneous drugs potentially vary significantly between patients. One commonality is the bilirubin thinner. All liver transplants have their gallbladder removed as part of the process, so the bilirubin thinner helps the initial connection between the liver and the stomach. Apparently the gallbladder is not very useful so you can just do without it. Another reason my surgeon gave for removing the gallbladder was reconnecting it could complicate future surgery in unexpected ways: the gallbladder may be in a new location or have new connections that were not expected by the surgical team.
The next set of drugs are on-demand pain medications. This includes Acetaminophen (Tylenol®) and Oxycodone. Tylenol is actually a pretty dangerous drug for livers, so it has to be used sparingly. Oxycodone is not as dangerous to organs, but it is potentially very addictive. So I avoid taking Oxy unless in a controlled setting like a hospital. I would prefer not to have it even available to me, but a feature of the discharge process was that all the drugs prescribed were also provided. So I now have, but don’t plan to ever use, the oxycodone at hand. The whole set of on-demand medications sits unused on the far right of my drug disbursement table.
The final drug is insulin, which requires a device to prick my finger, another device to measure my blood sugar, a table that translates my blood sugar to my needed insulin injection, and a third device to dole out the right amount of insulin into me. I was not diabetic before the surgery, but some of the medications I take can cause blood sugar spikes and having high blood sugar levels increases the chance of infections. Infections which Batman and Robin make more virulent. Eureka’s explanation for blood sugar testing and insulin injection are fairly interesting but pricking my finger four times a day does not sound enticing. At least the needles are tiny compared to dialysis needles. I never did learn to cannulate myself with 15-gauge dialysis needles.
Initially I used two major techniques to keep track of compliance with the regimen. A spreadsheet to sort pills on, check of consumption, and record metrics as needed. The printed version of the spreadsheet for a single day (June 1st) looked like the following:
In addition to this, I sorted the drugs in the same order as the spreadsheet and Stanford-provided listing sheet, across a desk. This was my mini-pharmacy:
An example of the Stanford drug listing (for the immunosuppressants) is:
Over time some of the drugs are removed (e.g. I was on PredniSONE for just two days and a couple of the anti-infections for three months) and others are tuned based on your body's reaction to the drugs. Especially Tacrolimus/Prograf is very tuned to have the desired 'Trough' value in your blood stream. Familiarity with the drugs and their dosage made the spreadsheet not necessary after a few weeks, and now (nine months post transplant) my main concern is just to remember if I took the morning and evening dosages at all: the quantities are all easy to remember.
If you do dialysis in a clinic you spend many hours a week sitting next to a dialysis machine. It is possible you never need to concern yourself with how it works: it can be treated as just a black box that the RNs and technicians take care of. It may also be out of your view, so if you do want a look, you may need to ask to have it turned a bit.
Understanding what the dialysis machine is doing can relieve boredom, provide education, and help avoid problems. Potentially very painful and health-threatening problems. Your doctor's prescription and the clinic technicians enter the values for dialysis, and these may be the correct values. In two years of dialysis, the values were mostly right for me. In the last few months though (at a different dialysis center), "mistakes were made". By understanding the machine's display I caught the errors at the start of the treatment.
My dialysis machine when I started dialysis in 2021 looked like this:
Later the machine was updated to a new model and the display looked like this (the pump rate moved up onto the display), which makes it a bit easier to read and explain.
The dashboard ('Home') mode is only one state of the machine, but it is the one you are most likely to see.
Using a diagram from the Fresenius Technical Documentation, you can see they agree with how it looks in real life (without the glare and perspective effects).
There are more than twenty values displayed on this screen. The following aspects are the most critical:
The core value driving dialysis session length is in the initial value of the ‹RTD› (Remaining Time on Dialysis) field (e.g. '0:56' in the diagram).
This is a countdown timer, so if you have a four hour session, it starts at four hours. Initially it will match a clock time countdown (say a four-hour session starting at 2:00, after an hour should be 3-hours remaining), but as the session progresses dialysis could be paused. The clock time will stop matching the RTD counter any time the dialysis session pauses. Dialysis could be paused because you needed to leave the chair, but for me it was mostly based on whether my blood pressure dropped too low. My session length was pretty much always four hours, although it could be reduced to 3.5 if there was a scheduling issue.
The ‹Blood Pump Rate› (e.g. '200') is the speed the pump is pulling blood out of the catheter or fistula . When I had a catheter it was 350 and with a matured fistula it went up to 400.
The session length and pump rate should be values you expect. If the pump rate is too low the dialysis will be less effective. If the session length is too short, you may be happy it ended early (but likely not because of the water effect), but they aren't going to just let you go. Or your doctor will be unhappy you are not following the prescription.
The ‹UF Goal› (e.g. '3000') is the amount of water they expect to remove (through ‹Ultrafiltration›) during the dialysis session. This should match the amount that your ‹Wet Weight› is above your ‹Dry Weight› as long as that isn't too much for you to handle. Values above 3 liters are risky for most people. I could 'try for' as much as 4 but usually would cramp out and fail.
If the ‹UF Goal› is too small, you will be water-heavy leaving from dialysis and are going to have to get rid of that water eventually (with more diuretics, paracentisis, or in subsequent dialysis sessions). So that is not ideal.
The ‹UF Time› (e.g. '0:56') is a countdown timer for ultrafilteration, which will match the RTD countdown initially.
This is a second reason you want the RTD value to not be too short. If the UF Time value is too short and the goal is correct, the machine is going to quickly pull a lot of water. And you will likely have increased chances and severity for cramping.
Beyond the above values, the rest are mostly 'just interesting'.
Medical Peer Support enables patients to describe and listen to experiences, emotions, potential solutions, and doctor recommendations with other patients that may have similar medical issues. I believe a good Peer Support program improves patient outcomes due to:
By being peer-support vs. formal medical support, there is less fear of consequences to sharing and more variation of provided solutions. Compared to counseling or one-on-one mentoring, there is much more provided knowledge and alternatives perspectives.
As part of my requirements to get on a transplant list, I was required to join a chemical addiction support group like AA (Alcoholics Anonymous) or LifeRing. I did this to comply in spite of being sober: they said "Jump!" and I said "How High?". Because I had previous issues with alcohol, I had knowledge of my own issues and solutions. So I was able to contribute as a participant and by hosting several weekly meetings. I believe it helped some people become sober.
LifeRing has one notably different meeting: the Liver Spot. This meeting primarily focuses more on medical issues instead of chemical addiction, and I believe this medical focus enabled the improved patient outcomes as described above.
A normal Chemical Addiction meeting can not focus on medical issues due to lack of critical mass of patients (for diversity of perspective as well as understanding) and a need to spend significant time addressing the broader chemical addiction issues.
The LiverSpot is weekly with 20-50 participants in the meeeting. Over three years it seems as though 20 was sufficient and 50 is a bit too much (even with a fair number of auditors). By being weekly, people can easily miss a meeting knowing the next meeting is not that far away. By having at least 20 people, even if some do not attend a given week, there is still a critical mass to have a multitude of perspectives.
I have tried to expand the Liver Spot with both a second LifeRing meeting and with PeerZupport meetings (outside LifeRing to eleviate the chemical addiction requirement). So far these have not been successful.
There are some monthly meetings providing Medical Peer Support but the logistical aspects of these seem to provide significan weaker outcomes.
By being only once per month, it is very easy to miss a meeting and have a two-month gap. That is a long time for most people, but medically it is even more severe: a patient may miss out support when they are in a particular need that doesn't continue for that long a time. Symptoms, treatments, and state of mind may all be dramatically for the patient.
Also by being once per month, the meetings seem to have a lot of introductory overhead. Some of these meetings spend a half an hour or more having participants introducing themselves.
Related to the above (irregularity of participants and overhead of introductions) and the reasonable limit of a single meeting, there seems to be a lack of shared knowledge within the meeting. Questions that were easy for the weekly members of the Liver Spot to provide perspective on, did not seem to be answerable by any of the monthly meetings.
Overall it seems like the online (e.g. Zoom) monthly meetings mainly focused on:
This is possibly useful for some people but is fulfilling much less of a need than the ideal.
Some hospitals have monthly or even weekly support meetings. These can be useful for navigating the specifics of the hospital medical care and for providing presentations by hospital staff. In one meeting, there was a strong request for surgeons and other medical staff to explain what they do (and even had done to the participants) in more detail than possible in the hospital ward.
There are many social text forums that can provide assistance to patients. These benefit from people having time to think through an answer and possibly save/refer to it in the future. Unfortunately these seem to have significanly less weekly engagement than the online video meetings. Also some of these are unfortunately behind registration walls that prevent them from being searchable for investigating patients.
After getting a liver and kidney transplant, most of my prior bloodwork continued. These tested creatinine, organ enzymes, and other aspects that showed how happy my body and the new organs were.
New bloodwork was added to verify how much immunosuppression drugs were in my system. Without sufficient suppression, my body would reject the new organs as alien (not-my-dna) invaders. With too much suppression, it would increase my chance of infections, damage the new organs (e.g. nephrotoxicity), and cause other unpleasant symptoms.
Further new bloodwork was added to check for active infections that immune suppression could make more likely.
The whole system is complicated by the patient-specific efficacy of the drugs. So the doctors use try, discern, adjust, and repeat…
One of the main goals of the frequent blood work was to tailor the amount of immunosuppressant I needed to be dosed with. After discharge I was on Tacrolimus (Prograph) and Mycophenolate Mofetil (CellCept) to prevent rejection of the new liver and kidney. There is no goal for how much of an immunosuppressant a patient consumes, there is a goal for how much of the immunosuppressant is present in the patient's blood stream. Different patients process the drugs differently, so the bloodwork measures the results. Fiddling with the dosage will change how much of the drug is in the bloodstream.
For consistency and accuracy of the bloodstream value, bloodwork should be done about twelve hours after the last dosing of the every-twelve-hour immunosuppressant. This is called the ‹Trough› value. Since bloodwork is done in the mornings, you delay the morning dosing until after the bloodwork. Based on this trough value, the dosage may be increased or decreased later in the day.
The pattern of my Prograph dosage (in milligrams) and Tacrolimus levels (in nanograms per milliliter of blood) looked like the following in the first few months. Ultimately it reached a stable amount of a dosage of 2.5mg and a trough level of about 7 ng/ml. This lasted for several months after before being adjusted again.
The pattern of my CellCept dosage was quite different and based on a different issue. It was never tailored based on my body's efficacy toward the drug, but instead was based on my body's reaction to an infection. Ignoring the infection, the graph looks like the doctors randomly wanted to have the Mycophenalate go to zero for a while before returning to 1ug/mL
A few weeks after the transplant, I had no evidence of the BK Virus. Two weeks later, it was present. And two weeks after that it was signifcant. This is what drove halfing and ultimately pausing the CellCept dosage. Eventually the level of BK Virus was relatively stable and at an acceptable level, and I was returned to the half-dosage.
At the same time my Tacrolimus levels were getting in better control too, as the initial graph showed.
During the summer and autumn after transplant I seemed to get a number of colds (which was unusual for me) and they lasted for much longer than they normally last for me. This may be a side effect of the suppression or just coincidence.
Over a two year period I had a bit less than 300 4-hour dialysis sessions. Or more than 1000 hours of dialysis. These varied from being in the hospital, where the machine came to me and attached to my neck catheter, through having dialysis in a Satellite Healthcare center where the machine attached to a chest catheter, and finished with fistula-based dialysis where two large (15-gauge) needles are put into my upper left-arm. I was approved for solo home dialysis, but while preparing for that new approach, I was given a third kidney via transplant. So I missed out on the experience of putting two fat needles into my arm and taking them out four hours later.
As an ICU patient in need of dialysis, I have only vague memories of my first session. Late in the evening, a technician wheeled in a large machine and parked it near my bed. They then hooked up a bunch of tubing into the bathroom and did something to my right-side neck that I couldn’t see. I was already trapped in the bed by being feeble and many other machine connections, so being attached to yet another machine had no impact on me.
The machine running all night also had no impact on me physically. I believe this is a general advantage of the slow flow rate of overnight dialysis, which stresses the heart less and also gives more time for the body to rebalance any water drawn during dialysis.
The next form of dialysis I had was during the day. A machine was again wheeled into my M5 (Liver and Kidney ward) room, which this time came along with a nurse overseeing the process. Other than having someone to talk with, this felt the same as the overnight dialysis. I believe the continual nurse oversight prevents cramping and other common dialysis symptom: the nurse can adjust the flow rate dynamically based on physical measurements.
Changing to a dialisys clinic was a dramatic adjustment to having dialysis as just one of many procedures within the hospital. Clinic dialysis involves:
Preparing for dialysis is partially dealing with physical things. It is common to have a bag containing blankets, cushions, entertainment, and possibly some amount of food to take to dialysis. If you need walkers for movement, they need to be available for transport.
Additionally, there are bodily preparations. Dialysis can pull water from the body: the goal is to have a constant ‹dry weight› (say 75Kg) by the end of the session, so during a session they could pull up to 4 liters (4Kg) of water from you if you weigh more than 75Kg. This water draw alleviates Ascites and other water gain issues that are caused by damaged kidneys and livers. Unfortunately, that water draw can also cause severe cramping. For me, it happened mostly in my legs and hands, but more extreme versions can happen in my stomach muscles. You can’t (easily) stand up during dialysis, so cramping can be very painful and not quickly alleviated.
One self-preparation is to decide how much water is within you. Ideally you keep as close to the dry weight as possible between sessions. But in preparation for the dialysis session, you may want to add some “inbound” water to your stomach. You may also want to have some amount of fluid to drink during the session. Unfortunately these increase either your ‹wet weight› or your post-dialysis ‹dry weight› There is so much variation that I don’t believe any recommendation is right for everyone at any given moment. I experimented over two years and came up with different conclusions at different times.
I always tried to empty my bladder and bowels (as needed) before the session so I didn’t need to be temporarily unhooked during dialysis.
Initially I was not allowed to drive, so I was dependent on others to drive me the ten miles from my home to the dialysis center. My family was available to drive me, but the reliability of family members to get me to dialysis on time varied a bit. And it always felt like an imposition on them. There are also ParaTransit services, public transport, and Uber/Lyft/Taxi services. It appeared that some patients had a lot of issues with these other services in terms of reliability (e.g. a Taxi leaving without waiting for the dialysis patient to be medically released). I only used them sporadically and did not encounter any problems although they can be expensive when you use them six times a week (two trips every other day).
Within about a month I was able to drive myself, so that alleviated most of the transportation concerns. Eventually I moved to within reasonable walking/biking distance of the nearest dialysis center, which meant I could potentially get to dialysis even when I was unable to drive.
The dialysis facilities I went to had 24 chairs, and I tended to have appointments for the 2PM shift. The length of dialysis varies but is limited to 4 hours of dialysis itself. Setting up and disconnecting from dialysis can take about fifteen minutes each. So there is some chance of delays where a previous patient is still using a chair. I probably waited at most an hour for a chair, but was normally more like ten minutes.
To prepare for dialysis you need to weigh yourself and transport everything to the dialysis chair. When I had a walker, this was fairly involved, but eventually I could just carry a bag and wheelchair cushion to the scale (for the ‹wet weight›) and to the chair.
With a catheter, the RN does all the work of cleaning and connecting the dialysis tubes. The patient just has to have clothing that enables easy reach of the chest area.
Assuming you feel comfortable, you now need to spend four hours sitting in a relatively comfortable chain, in a room with a couple dozen other people, and where there are televisions displayed over every chair. Unfortunately at my center, the televisions display daytime (2PM) shows that are not of any interest to me. And the twenty four people are all spaced far enough away that you can't talk to them. Only in one case did I have someone near me physically (or really near my sister that was sitting next to me) and that discussion did not go well. It is easier to talk to the staff, but they are busy. Finally the chair is probably objectively comfortable but your body is very frail and you can't get up at all, so for me I needed an extra cushion, and some people brought pillows and other comfort improvements.
The room is noisy — the machines make standard noise, and alarms go off intermittently — so you need headphones to either overlay the noise or to cancel the noise. The room is somewhat cold and the procedure draws heat from you, so you need blankets to stay warm. Finally, you are pinned by either the chest catheter or arm fistula, so you need to work around those constraints.
Ultimately I fell into using good noise canceling headphones, a personal electronic device to watch movies or join meetings, talking to staff, and an ability to sleep for part of the time. Most patients seem to simply zone out and watch the television.
Dialysis is not just sitting in a chair. It is sitting in a chair where 5% or more of you blood is flowing into an external machine every minute. At the same time dialysis may be pulling a lot of water from your body. For me it was up to a liter per hour. The stress of dialysis caused me to severely cramp sporadically: eventually I would figure out indicators before the cramps occurred and could get assistance to adjust the machine settings or do more active recovery techniques. Other times the machine would complain (and the nurses respond) when my pulse or blood pressure dropped but without me be aware of any significant symptoms. I may have lost consciousness beyond just sleeping.
Other patients had more severe symptoms, including excruciating cramps and loss of consciousness. Every once in a while parametics would be called to transfer the patient to the nearby hospital. Beyond empathy for the person, it does make you worry about the future on dialysis.
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Having a fistula makes scheduling dialysis much easier. Only RNs can deal with chest catheters, and in California there is one RN for every twelve patients. So arrival times need to be staggered and there is a limit to which sessions a patient could go to. Many more technicians are present in a clinic, and most of these are allowed to insert and remove the dialysis needles. So the bottleneck on starting and ending a dialysis session is a bit easier.
Most of the technicians are also very skilled at ‹needle work›, but that leads to the biggest fistula drawback: it hurts both putting in and pulling out a 15-gauge needle. And you can bleed significantly after you pull a needle out. And you can miss (infiltrate) when putting a needle in. And it is just generally scary. But the benefits are eventually the needle wound closes up and so the risk of infection is less than a catheter. And you can shower, swim, get sweaty, and various other activities without concern.
I never had home dialysis but I prepared for it, up to the point of rearranging my furniture and scheduling training sessions with Outset (for the Tablo machine). The main advantage of home dialysis was an ability to schedule sessions outside of normal clinic times. Most obviously, having dialysis late at night would enable me to leverage the daylight hours without interruption. Patients can also control dialysis session duration and frequency more easily, although I found my schedule to be acceptable.
Tradeoff for home dialysis is dealing with insertion and withdrawal of needles, a lot of required supplies, water and power usage, and distance of any emergency services.
Many people have found home dialysis to be great, but I never experienced it to confirm whether it would have worked for me.
Doctors commonly ask patients how much alcohol they drink. Usually Doctors just take the patient’s word for it, and treat them medically based on the claims.
Liver organ donations are a limited resource and are gifted based on need (eg the MELD score) and also the probability of success. Success includes the transplant surgery and the subsequent quality of the donated liver and recipient’s life. Drinking alcohol with a damaged or transplanted liver harms the liver and that success. So doctors are not going to take your word for it: you are going to have to prove you are sober now and will be sober going forward after the transplant.
Medically sober is complete abstinence from alcohol. There are obvious sources of alcohol like wine, beer, or a martini. But there are medically significant amounts of alcohol in foods (especially sauces), cough medications, and mouthwash. Medically sober is complete avoidance of alcohol in any form, and doctors take your blood not your word to prove it.
The gold standard of alcohol consumption testing is the PEth test. This blood test can detect alcohol consumption over the last four weeks by the presence of phosphatidylethanol in your bloodstream. This phosphatidylethanol is produced due to consumption of ethanol (alcohol) and stays present for much longer than the alcohol and is detectable at the nanogram level. That is one-billionth of a gram. A tiny amount.
Even though the PEth test is at the nanogram level, they do realize that there is some error range in the test. For Stanford the values they use are:
To be Medically Sober you want to get a 'Not detected'. That is the only one where there is basically "no argument". If you get 'Light' then you may need to investigate and explain why you have consumed alcohol that got you that 'Light' value. Depending on your medical program that may be fine. I only have anectdotal information: all my PEth results were negative as I had been completely (medically) sober for half a year before going into Stanford ER.
There are alternative to PEth tests including EtG (Ethyl Glucuronide) urine, blood, and hair tests. Sporadically I had straight 'Ethanol' tests, but I was unable to produce urine due to kidney failure, so I never had experience with these tests if they were ordered.
Being 'Sober Now' for six months is commonly required to get on a transplant list, but the doctors also care about you being sober with the new (reused) liver. They want the liver and you to have a good life together, so you must be sober for it too. Six months of sobriety provides a 60% chance of not relapsing statistically. Those are not good-enough odds to be given a new liver.
On top of being sober, you need to prove that you are committed to being sober. Variations of this commitment include:
Of the above, the last two seem to vary a lot among medical programs or initial patient sobriety state. I was not required to do an IOP, but was required to prove regular sobriety support attendance. And that commitment of attendance continues for years after the transplant. It is possible that some programs don't have the sobriety support requirement, and other programs seem to require IOP attendance.
Note also that the 'Sober Now' tests will likely continue sporadically during the period you are on the transplant waiting list. They may trust your word more as time passes, but they don't trust it completely.
I believe a major missing piece from the sobriety support system described above is regular medical peer support for pre-transplant and post-transplant patients. Some hospitals have monthly support meetings, but these have issues with infrequency and 'supervisor' presence. Medical support from LifeRing's Liver Spot and other programs can make keeping sober easier because people understand both sobriety issues and the stresses of the medical illness that could cause lapses of sobriety.
In March of 2021 I was at Stanford hospital in the M5 Liver and Kidney clinic dealing with serious malnutrition and other medical issues. I couldn't really eat, had difficulties taking oral medications, and my veins were so collapsed that it was hard to draw blood from them. M5 rooms are pretty nice though, and after a long day of tests I was returned to my room. All that remained was a final blood draw of the day.
That blood draw took a long time. More than an hour to get a specialist to try to find my tiny veins and even longer to try to get a needle in it. I don't remember whether it was successful: I passed out a bit before midnight either way.
The next day of 'my' life is where 'DAIR' kicks off "There is a surfboard on the door in front of me.…" I was now in a much less pleasant room and wired up to many different devices. It is several days later and I am now in the ICU.
Between falling asleep in M5 and waking up in ICU, I was an 'encaphalopod' (my own terminology, AFAIK). The doctors and my family can tell me how I behaved but I was not me. I was something else. When the liver fails to process and remove toxins (e.g. ammonia) from the blood stream, they can build up to a level that they make it to your brain. There are all kinds of effects from Encephalopathy, but in my case, I simply lost my mind. Or had it replaced with some other creature's mind.
Examples apparently included pulling out catheters, leaving my room, and having completely nonsensical conversations. Ultimately I entered a stupor and coma, eleviating the 'leaving my room' symptom. I have memories of none of this time. I fell asleep in M5 and woke up to the Surfboard in ICU. I can't access any perception of anything that occurred in between, even when I was apparently mobile or able to talk.
After waking up from the coma, I was not back to my state when I fell asleep in M5: I was both very confused and severely cognitively impaired. I had no idea where I was or how I got there. I describe the experiences waking up and dealing with my new world in DAIR, but in summary it is the intersection of trying to regain my mind, medically recover my body, and dealing with the hospital staff that are trying to help me.
Because the state of encephalopathy causes the patient lose control of their mind and body, the hospital staff do tests of your mind and body to see how well you have recovered. These tests include:
As you recover from the encephalopathy, you do better and better at these tests. I never remembered the period I was in a stupor or worse, but I did feel like I was present in the moment and remembered my life before the incident. Several days are simply missing from my conscious life.
Even years later, I may still be mentally and physcially impacted from the episode. I have clearly made monumental progress from when I first returned to consciousness. Most people wouldn't know I am impaired unless they knew me well before all this happened.
An interesting aspect of becoming an encephalopod is you never want to become one again. It is now a serious worry of mine where before I had no particular worry about falling into a coma. And because you can't tell when you turn into an encephalopod, you have to solicit someone (who knows you well) to look out for it. It feels like paranoia for 'Body Snatching'... except it isn't paranoia if it can really happen (again).
In March of 2021 I visited the Stanford ER after several months of getting progressively sicker. By the time I made this critical step, my abdomen was extended like I was pregnant (perfectly matching the pictures for advanced Ascites) and one of the first ER procedures done to me was to drain that excess fluid in my abdomen with a Paracentisis (greek for 'peircing').
Paracentisis is done partially to relieve a symptom (the excess water) and also to test whether there are any bacteria in the fluid. It is a conceptually simply procedure: jab a long needle into a pocket of water in the abdomen and pull the water out.
My first paracentisis may have gone well in terms of diagnostics: they verified I had no bacteria in the abdomenal fluid. In most other ways, it went pretty badly. The rotating doctor and their assistant both seemed to have limited experience with the procedure.
The needle was inserted successfully in a pocket of water that was found through using an ultrasound machine. This may be easy given how full of water I was, but it can be difficult if there are fewer or smaller pockets. But withdrawing any water apparently was not working.
There are 'light vacuum' liter bottles that can be attached to the paracentisis needle and ideally they just fill up. That did not happen.
After trying a couple bottles without success, and with some amount of water going onto me, my clothes, the bed, and possibly the floor, they changed to using a syringe to pull water out. Eventually they got some amount of water into bottles, which didn't have a visible impact to my abdomenal area. But it was enough for the diagnostics and I was given standard hospital wear to replace my soaked clothes.
When admitted to Stanford from the ER, I was put into the M5 ward that specializes in liver and kidney disease, treatment, and transplants. There I met a nurse that specializes in paracentisis and saw a much more effective and less messy version of it.
An ultrasound is done to find a pocket, a long needle is inserted into the pocket, and a tube extends off the end of the needle. The nurse simply attached a bottle to the tube and it filled up. After four more bottles, I was ten pounds liter. The nurse did explain that some of the bottles don't work properly, so this could have been the issue in the ER. After removing five liters, she removed the slender needle and put surgical glue over the whole.
The benefit of losing ten pounds of weight massively outweighed the very minor discomfort of the procedure. It is a bit more painful and invasive than a blood draw, but not by much.
In 2021 I went to Stanford Emergency after several months of getting progressively sicker. Ultimately I had both liver and kidney failure when in the hospital, and with liver failure a very important term comes out: "MELD Score". Over the next few months and years, I would understand MELD scores quite a bit better but had never looked into the actual calculation and 'drivers' sufficiently to describe them.
The MELD score is a way to prioritize patients in need of transplants. It is 'objective' in that it is solely based on measurements, and it is supposed to correlate with probability of survivability without a transplant so those most in critical need get transplants before those that can wait. The formula has changed over the year, but the goal remains unchanged. Because MELD is a calculation, it is not in any test result. Most of the components are from normal blood work, so their contribution to the score is easily calculable, but the INR (blood clotting) test is not commonly prescribed.
The MELD score is commonly opaque to many patients. It is just a number a doctor told them. There are online calculators (e.g. https://optn.transplant.hrsa.gov/data/allocation-calculators/meld-calculator/) that can take the component values and tell you your score, which is sufficient for many patients wanting to have a bit more insight.
But to truly understand the number, you need to know the details of how it is calculated. Fortunately, the MELD calculation is very simple.
The main components of the MELD score are:
Of the above, the INR value needs a special test, but can also be 'assumed' to be '1' (normal) if you don't know it. The rest are on a metabolic blood panel that is commonly prescribed.
The above component values have a number of different ranges, so to use them together in a MELD score calculation, they need to be normalized into a similar scale system. Going through each one:
After doing all the above transormations, each component now has a reasonable baseline (zero value) and scales similarly to other components, but their contribution to survivability (and so the MELD score) is different. To deal with how these components correlate with survivability, research doctors weighted them. The following is the weighting values for these component in the MELD3 score.
There are a few other components to the formula: there is a historic baseline (no problems) value of '6' for MELD scores, women's numbers are slightly undervalued compared to the data, and there is a bit of correlation (double counting) of similar bloodwork components that are combined into the final MELD score. See the following equation and https://optn.transplant.hrsa.gov/media/qmsdjqst/meld-peld-calculator-user-guide.pdf for more details.
With the five core terms and four other components, you get a MELD score that is basically:
The MELD is ultimately that simple.
When I first went into Stanford in March of 2021, I was very sick and was in the hospital for about a month and the ICU for more than a week. During this time, my doctors didn't talk to me about a MELD score: it isn't diagonistically useful although its components are. I had high Bilirubin, so they needed to treat that. My kidneys failed, so they needed to treat that. I had hepatic encephalopathy and went into a coma, so they had to treat that. There was no day-to-day MELD score because it was not relevant to the doctors, to me, or to my family.
But I did have a lot of bloodwork done, and from that data you can see the above components driving the MELD calculation during the period I was hospitalized.
The basic blood test produced the following values. Note that the sodium is on such a different scale that it dwarfs the other values so is clearly not directly composable with them.
Normalization of these values so they have similar characteristics produce this:
With this everything is within a plausibly similar range, has similar physical impacts, and badness is in the same direction (positive is bad).
Scaling by MELD3 contribution gives:
These are now point-for-point equal to the MELD scale. For example, as of June my Creatinine value was producing '12' points toward my >20 MELD score.
Summing these components all together gives:
Or more simply:
When admitted to the hospital and as I moved to ICU, my MELD spiked to above 35. As the symptoms causing the Bilirubin and INR values were dealt with, my MELD dropped below 30. And finally as my second-instance of a Sodium issue was dealt with, my score dropped into the low 20s.
The MELD score prioritizes patients on the liver transplant list. The score is calculated with a relatively simple formula based on five bloodwork values (INR, Bilirubin, Albumin, Creatinine, and Sodium). So it can be calculated fairly often but is not clinically meaningful except in the context of needing a liver transplant. In other situations the componenents values can be important to treatment, but the MELD itself is too vague to base diagnosis on. You can have an accutely high MELD score but it can go down dramatically as the causes of symptoms (e.g. Bilirubin) are alleviated from medical treatment.
The MELD score is only used medically when other treatments are no longer effective in further symptom reduction (and the MELD score is above a 17 or so) so a transplant may be the only way to achieve further physical improvement.
I was about a month for an elbow AVF. Infiltrated once but that was at three months and more a technician problem than an AVF issue. They started with a larger gauge needle but migrated within a week.
«Maturation mostly occurs 4 to 6 weeks after the initial fistula surgery but that timeframe can vary with the average time ranging from 1 to 4 months. » • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5989091/
I believe they did a second vein mapping (dynamic ultrasound of the blood flow) that needed to reach a particular flow rate and possibly diameter before approving use.
Something like «The Rules of 6 (flow volume >600 mL/min, vein diameter >6 mm, vein depth <6 mm) » • https://pubmed.ncbi.nlm.nih.gov/35227801/
Presumably if it failed to mature sufficiently they would follow up in another month or so.
One of the drugs I was on was incredibly effective. Effective at its “on-label” use: Lactulose is a uniquely powerful laxative. And it is life altering.
The reason I took Lactulose is because it binds with ammonia, clearing it from your blood stream and preventing a repeat occurrence of encephalopathy. Given avoiding insanity was very important to me, getting rid of ammonia was very important to me. And so Lactulose was very important to me.
But the ammonia binding characteristic of Lactulose is a secondary effect. Its “on-label” primary effect is as an incredibly powerful laxative. So you drink Lactulose, it happens to binds with the excess ammonia, and you flush everything in your digestive track out of your system. Not once or twice a day. The goal is three or more times a day. Medicinally, the more the merrier, although doctors do realize there are functional issues if you don’t have a rectal catheter.
Because of the severe life impacts of the drug, within LifeRing Liver Spot meetings Lactulose is called the “L-Word”.
A 'Fistula' is like a surfaced artery, except it immediately goes back to your heart. Like a highway loop with no stops in between.
Apparently, this can happen naturally: some people have an artery that connects to a vein directly instead of going through capillaries first. It can cause several problems due to the abnormal blood flow and pressures. Large fistulas can be surgically fixed and removed.
Somehow nature inspired a doctor to do the opposite: create a fistula where none existed before. Usually this is done in your arm, near your wrist or elbow. The surgeon shunts an artery to the returning vein, so some of the blood flow immediately loops back through the shunt instead of continuing to your hand. Since veins are on the surface and the blood is headed back to the heart, this creates an unusually good blood access point. A vein on steroids.
