My story and plan for PSC

Thank you Cactusgirl. Is there anyway I could talk to your daughter about how she went through college without drinking. I think it would help talking to someone who experienced the same thing I did. Thanks.

All it takes is to say that you don’t drink. If someone asks or if you feel comfortable with it, just say that you have a chronic liver disease and everyone will understand why you don’t drink. You’ll just need to accept that you’ll have this disease for the rest of your life and that you’ll need to change your behaviour because of this. :slight_smile:

Also, it’s not even legal for you to drink in the US since you’re 18. :zipper_mouth_face:

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HI
I was diagnosed with Chrohn’s in 2007, and PSC in 2010. At that time there was no treatment and I was very sick. Now I climb mountains, go to parties, do salsa dance, run a company, and raise my 4 kids. I still have to do things with my disease too, but it doenst run my life. I live a normal and active life. YES IT IS POSSIBLE . If you have gotten this far already living well, good for you! I am much much healthier than I ever was now, even though Ive had this disease for years. I am doing better than anyone else around me at the moment. But I have done a lot of work to gain back my health. So here’s some tips for you from someone whos been there:

-Do what works for you, forget about anything else.
-Mental health matters a LOT.
-when it comes to smoking, weed turned out to be a wonderful painkiller, and CBD oil was wonderful for everything.
-take your meds
-eat a healthy diet low in sugar and low in Red Meat, as much real food as possible. If you can fall in love with cooking, you will have fewer health problems.
-Drinking. I know many people say don;t, but my dr is one of the best in his field. For me, my liver functions well, so theres nothing wrong with normal levels of drinking according to him. Ive been drinking at normal levels and my liver has continued to improve in all tests. BUT it is very easy to slip into problems with drugs and drinking because of the mental health strain (says my DR), so you have to talk to your doctor, be honest with them, and be careful that you don’t slip into a problem, its easier to get there than you think.
-plan to live a long time. Take care of your body like its going to carry you into your 90s. My grandpa has PSC and UC, he’s 91 now and healthy.
-Do yoga and stay active. My grampa’s advice
-if something is not working, try something else. sometimes something will work for a time and then wont work anymore. Try it all. Acupuncture, milk thistle, medical diets, new doctor, massage, new hobby, craniosacral, etc etc, there are many things to try.
-have FUN!! don’t stress, dont freak out, enjoy your life like its the only one you have. go to parties, go climbing, try new hobbies, make new friends.join clubs or try a new hobby to make friends of all kinds. Travel if you can.
-surround yourself with posative people who you want to be like. good friends will support you and help you have fun and be healthy.

Good luck!!

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oh, and Drew, my grandpa is 91, no transplant. :slight_smile: so yes some people can go the whole lifespan without one.

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Hey Leslie, I really appreciated everything you said in your post. Thanks for taking the time, I’m aspiring to 90 myself, despite rPSC and a few other obstacles that I am striving to outsmart, and - like you - with a few actual mountains conquered as well.

Hi Drew, thanks for sharing your story! I’m also on vancomycin and have been doing well on it since January 2018. I’ve drastically limited my alcohol consumption because even on vanco, I feel liver pain (on the upper right-hand side of my abdomen) whenever I drink alcohol. I feel like the pain affects everyone differently, so I’d say do what is best for you and what your medical team recommends.

May I ask what doctor you have in north Georgia that prescribed vancomycin? I live in southern Tennessee and am having such a hard time finding a nearby hepatologist willing to prescribe vanco. Thank you!

JEnZ, I am still under the care of a pediatric hepatologist. They didn’t make me change to a new person when I turned 18. I’m at Children’s Egelston location next to Emory.

Drew, hi neighbor. I’m in Marietta.
Jeff

Thank you! That’s great that you can stay there and continue getting vanco!