The Liver Spot is a LifeRing meeting that focuses on medical issues associated with recovery.
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.
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.
