Can anyone tell me if medical marijuana is permitted pre-transplant?

@feruj I’m so glad you found this group while you’re in the process of evaluation for a liver transplant- wish I had! I was formerly evaluated by my liver team Aug 3, 2021 and had my transplant surgery Oct 29, 2021. By the time I met with the team I was VERY sick. I didn’t think to ask about medical marijuana for some reason- I was very symptomatic- fatigue, nausea, episodes of hepatic encephalopathy etc. I suspect they would have said yes with some restrictions. Post transplant I’ve sometimes had GI issues and the big one is back aches as I had a fall in May, 2021 during a severe episode of hepatic encephalopathy (this phenomenon doesn’t happen to the majority of patients). I currently use cannabis tinctures at night for my back pain at the end of the day, and it has helped nausea a lot. My team brought this up as a possible aid (I live in MA where it’s legal) and I’ve been doing this- a few drops in my tea at night- since summer. It helps a LOT. I was told it had to be pure THC with no CBD or melatonin. I’m not supposed to smoke it- which is fine as I’m not into combustibles! - because the worry post transplant is the spores could cause a fungal infection. This is a long way of saying it’s a fair question and I would follow the advice of your new team. I follow ALL of their advice except I eat more sugar than I should.

How are you feeling physically and emotionally? I know it can be lonely. You will find good support and some ideas here. I can never tire of hearing about others’ experiences as each story if different and yet we have a common thread linking us together. Are there people in your life you want to share with but you are reluctant? I remember sharing my general feelings etc with friends and family but I did experience a loneliness that I never had before- kind of an existential feeling.

I hope you will share a bit about yourself on this forum. All care to you.

I happened to be reading about the MC and stumbled upon this forum. I have a huge family but I haven’t spoken to a single person about this with the exception of my husband who is baffled by my reluctance to share even a headache never mind something so serious. But I have always been a very private /shy person.
I was seeing an oncologist because imaging showed a mass on my liver and was told I needed a biopsy. After months of labs (my levels were horrible) and ER visits/stays, no biopsy; the mass was no longer there. The oncologist let me know that I needed to choose a transplant team because I definitely needed a new liver. Quite frankly, in the moment I had stronger feelings of disappointment because I wouldn’t be seeing that particular physician anymore. Ironically, I didn’t even think about that until I wrote it just now. It might be because he was always blunt/no coddling.
Emotionally, I have always faced life very practically. I am sick, I need this procedure and regardless of the outcome, I’ve lived a great life and always try to be a positive, kind person.
What worries me is how my husband is doing. It can’t be easy (even though I’m not physically sick), for him. He’s always positive but it has to be weighing on him.
I would really appreciate some feedback on my not feeling obligated to share/talk about this. I realize I’m so close to it that I’m not being objective.
Thanks for responding, I already feel better just typing this.

@feruj Serious illness already throws a person out of their comfort zone, so I say stay in yours as a private, practical person. Perhaps your husband needs permission to share with another person to ease his burden? At first I was very private. I was also confused about how I could be so sick so suddenly, so I wanted a lot of privacy. I felt very exposed, similar to how I felt when my husband died suddenly when our daughter was little. I didn’t want to have all eyes on me again. I am also very private. I also come from a family of stiff upper lip WASPs. Just before I met the liver team I began sharing more freely because I had a plan in formation. It was helpful to share more and by now I am totally open about it but I do guard my emotions. For me it helped to create an “inner circle” after a certain point in time. My old mom, my partner of a few years, siblings, my 20 year old daughter, a couple of good friends. In retrospect I think being a little more open helped those caring for me (I cannot emphasize how sick I was at this point, I even had to moved into my mom’s place as it was not safe to be alone for long stretches) as I could see that they needed to share their burden. Everyone is different.

I wrote a lot to relieve the chaos is my brain. Often I just made notes in my iPhone Notes app while I was at the lab, Dr, hospitalized or home. I needed the release. You said writing your comments felt good- there is something magical about writing.

I find this forum to be a safe space and I read comments more than I write.

I also used walking as much as I could— and being outside everyday— to help me process privately. I find that even being outdoors for a short bit reminds me that I am part of the world, yes I’m struggling but I am part of something larger than myself. I remember an older widow urging me to be outside everyday after my husband died out of the clear blue. That experience was much harder than a liver transplant.

@feruj, I'd like to add my welcome. Medicinal use of marijuana has been shown to help some people with the symptoms of nausea, headache and sleeplessness. I can understand you wish to see if it would provide some relief for you. However, you are equally wise to research whether the use of medical marijuana might jeopardize your chance of being listed or receiving a liver transplant.

The answer is not clear. You may wish to read the medical and ethical complexities in this paper:
- Denying renal transplantation to an adolescent medical cannabis user: An ethical case study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6671627/

My recommendation would be to talk with your transplant social worker before using marijuana at the hospital where you are listed. They may have criteria specific to the hospital's transplant listing. Be honest and they will work with you, either to use marijuana safely or to find alternatives for your symptoms. I truly hope you find relief.

Hello Ferug,
I also worry about my husband. I find myself in a similar situation. Sitting on the fence of liver transplant since I am not seriously ill with too many symptoms. Liver is cirrhotic and now possible FMD with some kidney pain and possible aneurysms. I go to Mayo Jacksonville every three months from 6 hrs away in winter and 1200 miles away in summer. It is a small price to pay for keeping tabs on all that is going on but it wears on your emotional health. My husband and I have been married for over 50 years and he has his own health issues with his back. I hate the burden this has placed on him too.
Thanks for sharing your thoughts. It’s good to know others are feeling the same.

@feruj - Definitely ask your transplant team. I think it depends on the State and the hospital. I wish I would have asked. If you ask and the answer is yes, I would get it in writing. I remember pre transplant they tested for everything from alcohol, marijuana, barbiturates, etc. I did ask Post Transplant to use a cbd/thc gummie and the answer was yes.
More and more I think the medical industry is coming around to the benefits of thc.

I would ask them directly, weeks ahead.
During many hospitals visits I often seen written warning to patients like

"if you taken ...... last 72 hours or last week, please inform us so we can reschedule another appointment for you.

To avoid this - ask your doctor hospital.

My hepatologist at my transplant hospital told me that while recreational and medical marijuana is legal in my state, the hospital did not want patients using it pre-transplant as they had not finished their own analysis. I went on the list in Nov 2020 and my transplant was Sep 2021. On retrospect, I believe they have a no alcohol or recreational pot use policy, period. I would not have jeopardized my place on the list for that for any reason.

I have a few questions about Marijuana and Kidney Transplants at Mayo. The first one is sort of about the policy there in general and perhaps just institutional rules.

I was told that if I were to be accepted into the renal transplant program, I would have to cease smoking marijuana. Stopping something that I had been doing regularly has taken some time and has been unpleasant, but I'm prepared to do it. The question is by when would I have to give them a clean test? I smoked very regularly and it won't even be 30 days by the time of my next appointment. Saying nothing of the fact that I have been doing it for the past 5 years that I have been on Dialysis. When do I have to give them a clean test by? The bottom line is, that if I'm not a candidate for a transplant, then I'll continue to smoke marijuana. I mean, what is the policy there regarding this kind of stuff? I'm accepting of thier belief that marijuana is contraindicated for a transplant and I'm eager to comply, but as it was a pretty entrenched habit, it took a couple runs at it as it were.

A follow-up question would be about the FDA approved drug Marinol. Would Mayo have a problem with this drug? The Psychologist had informed me that much of the reason that marijuana is prohibited, is due to it not being a FDA sanctioned or tested substance, but Marinol is a tested pharmaceutical and there are no questions about dosage with it.

If there is anyone out there who has any info on this aspect of the Transplant process, I'd appreciate your insight.
Thanks,

Welcome, @waningphilosophic. You're asking great questions. To get answers specific to Mayo Clinic and marijuana use, Marinol and kidney transplant, I recommend talking to your assigned transplant social worker. You want to be certain about the policy at your particular Mayo location/state.

I moved your post to this existing discussion:
- Can anyone tell me if medical marijuana is permitted pre-transplant? https://connect.mayoclinic.org/discussion/medical-marijuananauseaheadache/

I did this so you can read previous helpful posts and connect easily with fellow members like @katebw @ssapp1 @johnnoregon @feruj who are asking similar questions and sharing tips.