I just joined the group today and just want to kind of put my story out there and see what everyone else is going through. I was diagnosed with PSC after being blown off by one doctor as just having horrible abdominal pain from fatty liver and being overweight. About 8 months later I ended up spending 4 days in the hospital and many tests, lab draws and bad IV's later was found to have his disease. Once I started studying up on it I was so scared. All I could think was Im never going to get a liver and die or I'm going to get liver cancer and die. This is no way for a 31 year old person to live. I have lost my best friend of 13 years and many others because I can no longer go out and drink and party. I don't get invited to things also because I can't drink,which is very sad and ok at the same time because not only do I work full time I am also a full time student. I try to be strong but a lot of days I miss my old friends and my heart hurts that they are not by my side during a tough time in my life. Anyway, I am lucky I have an amazing partner of 5 years that will stand by me through anything and my family who I can count on for anything. Also a very small group of close friends. I am thankful that I found this group and would like to hear others stories. I hope you are all well and I am thankful for each of you :)
I'm so sorry for your experience, especially that your friends don't want to spend time with you because you can't drink. I've become fond of Fre alcohol removed wine and O'Doul's non-alcoholic beer. It's a bit hard to find in restaraunts, and all the "virgin" cocktails are so high in sugar, it seems, but don't give up. My symptoms are under control now, and I'm looking forward to the day when sick livers can be healed with adult stem cells.
I think you can keep your friends if you remind them you are the perpetual "designated driver!" That assumes you are not an alcoholic and you don't mind being sober with the gang. It has worked for me.
I had PSC for a long time and recently got a live donor transplant which saved my life. I'll be straight with you. Let your fear motivate you to learn about this disease. Be proactive. Get a hepatologist to treat you.They work at major hospitals, usually associated with a medical school. Most GP and GI doctors do not have the expertise to treat you. Don't feel sorry for yourself. It's a luxury you cannot afford. The brave become bolder the darker the night. Try to maintain a social life with your friends, even if you can't drink. Have a good time and enjoy life. Tell people about PSC without shame. You did nothing wrong to get PSC. When you start getting symptomatic, especially if your MELD score is low, start pressing for your transplant options. Ask when your doctor thinks you will get a transplant. Keep bugging them about it. Learn about the surgery at Mayo.org or NMH.org (Northwestern Memorial Hospital in Chicago, Kovler Transplant Center.) I was deathly ill, but I had a low MELD score. I successfully found a live donor through networking with friends at age 65. I'm in great health. Keep asking questions on this blog. There are many experienced PSC'ers that are ready to help you through this journey. May God be with you,
YOU SOUND NORMAL TO ME...I know it's not cool but isn't it nice to know you are normal in this group. LOL...I found that helped me. Once I realized I wasn't being targeted and it wasn't me against the World or WHY ME, I settled down and started living one day at a time. I can actually go to the bar and have a GREAT time....like these Octoberfests. I'm great to have around because I don't drink and I can drive people home and I get to listen to BUZZED people in the car...hilarious.
Actually, I don't go out very often and YOU ARE RIGHT...I lost ALL my friends. However, my new ones are great. They are real. My dad just died Sunday morning and the support is amazing. Hang in there! Watch your diet and take care of yourself. You've got lots of great times ahead of you. Mona
Thank you so much for your Kind words Paul. I am glad to know there are people out there who are supportive and encouraging. Also I am glad to have made a new friend! :) I love to hear stories like yours because I know that there is hope out there and I glad you are well and enjoying life. I hope you have a great week and I hope to hear more from you soon!
Carlina
Paul Hain said:
Carlin31,
I had PSC for a long time and recently got a live donor transplant which saved my life. I'll be straight with you. Let your fear motivate you to learn about this disease. Be proactive. Get a hepatologist to treat you.They work at major hospitals, usually associated with a medical school. Most GP and GI doctors do not have the expertise to treat you. Don't feel sorry for yourself. It's a luxury you cannot afford. The brave become bolder the darker the night. Try to maintain a social life with your friends, even if you can't drink. Have a good time and enjoy life. Tell people about PSC without shame. You did nothing wrong to get PSC. When you start getting symptomatic, especially if your MELD score is low, start pressing for your transplant options. Ask when your doctor thinks you will get a transplant. Keep bugging them about it. Learn about the surgery at Mayo.org or NMH.org (Northwestern Memorial Hospital in Chicago, Kovler Transplant Center.) I was deathly ill, but I had a low MELD score. I successfully found a live donor through networking with friends at age 65. I'm in great health. Keep asking questions on this blog. There are many experienced PSC'ers that are ready to help you through this journey. May God be with you,
Thank you Mona! I am still new to all the PSC stuff but I am amazed at how people treat you when they are faced with "your" reality. It's very sad. I have my partner,family and a small but true group of friends that I know will always be with me. My poor partner gets the brunt of it,my crying and angry days also my happy days so I am the most thankful she has not been on the first thing smoking out of ohio! I pray and have faith that I will continue to be able to go to school and finish my degrees because that is my #1 focus. I have 4 1/2 years left and I will have my Masters in nursing and I will be happy! I am glad there is a group for us out here and I am looking forward to many more chats and meeting new friends. Have a great week!
Carlina
Mona said:
Hay Carlin31
YOU SOUND NORMAL TO ME...I know it's not cool but isn't it nice to know you are normal in this group. LOL...I found that helped me. Once I realized I wasn't being targeted and it wasn't me against the World or WHY ME, I settled down and started living one day at a time. I can actually go to the bar and have a GREAT time....like these Octoberfests. I'm great to have around because I don't drink and I can drive people home and I get to listen to BUZZED people in the car...hilarious.
Actually, I don't go out very often and YOU ARE RIGHT...I lost ALL my friends. However, my new ones are great. They are real. My dad just died Sunday morning and the support is amazing. Hang in there! Watch your diet and take care of yourself. You've got lots of great times ahead of you. Mona
Hey welcome! It sounds like you have a close group of close friends and family who are the ones who are worth standing by you! I am a Mom (UK) of a 14 yr old son who has recently been told he has PSC and colitis overlap - much like you I scared the living daylights out of myself after initial diagnosis and convinced myself of the worst - but this is one of the good sites where you hear the real stories and see that people can and do live with these condition for many many years. There is also some fantastic research going on at the moment (one branch of which we heard about through a childrens liver charity in the UK) about cell research advancing all the while - so there is most definitely hope on this site and just as importantly most definitely friends (and also some great pointers about sites where you can really research without scaring the living daylights out of yourself) The initial stages can be very frightening (they were for me as a Mom) and it CAN and WILL get better. Keep strong and thoughts from across the pond!
Hey Carlin. Like you I have just joined this group. However, I was in another group a few years ago and it was helpful. I was diagnosed in 2001. I immediately went to the internet for research - which scared the living crap out of me. For months I was worried and depressed, and felt sorry for myself. One day I had a talk with myself, and here is what I told me: STOP WORRYING. Worrying will not help a bit - in fact it causes the rest of your system to want to shut down. It destroys your sleep, which is unhealthy for anyone. LIVE YOUR LIFE. Do the things you want to do. Find a good doctor who will keep an eye on your bloodwork, and let him or her treat your symptoms (itching, etc). There are many supplements that will help. I currently take URSO, but there are many who believe it only makes the numbers looks good while not really helping. To my knowledge there have been zero studies that prove it helps all that much. I take Milk Thistle, as I'm sure many here do. It is a natural Liver detoxifier. It is pretty cheap as supplements go - Wal-Mart has it for about 6 bucks per bottle (1 or 2 months worth). If you start taking it, please remember this: After about 2 days you will feel discomfort in your liver for about 2 days - don't be alarmed - what you are feeling is it drawing out the toxins from your liver. It goes away after a day or two. Milk Thistle research will also show you that it is good for a number of things. It helps alleviate joint pain - many of my friends started taking it for that and it helped them. It is also good for menstrual cramps (I personally can't vouch for that - lol). Carlin, relax. Don't let the thought of this beat you down. Take care now.