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@katebw

@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.

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Replies to "@feruj I’m so glad you found this group while you’re in the process of evaluation for..."

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.

Hi, I am 33 yrs post transplant. My nausea has always been biggest problem. My GI and transplant team said NO smoking bc of fungal spores on flower, but edibles really help. I use Zofran sparingly and gummies. Talk to ur team. Pls don't jeopardize your health. Thanks for your honesty and sharing.