My story and plan for PSC

My name is Drew. I am an 18 year old Freshman at the University of North Georgia. I was diagnosed with PSC at the age of 14 and have no other health abnormalities. I have been mostly asymptomatic for all of these years until now. A year or two after diagnosis, I began smoking weed. I would only do it on occasion and when I did I was completely fine for the longest time until I began getting a stabbing pain under my left rib cage near the top of my abdomen. When I was sober, I would feel completely fine with no side effects, but when I smoked from that time onwards, I would feel that same pain. Due to this, I decided to quit smoking and quit vaping. I was vaping in moderation at the time. I quit vaping for half a year and quit smoking for a full year. Vaping never seemed to give me any adverse side effects the whole time I did it. When I went back to smoking after my break for a year, I didn’t feel the pain under my left rib cage anymore. I was extremely happy. I began to smoke on the weekends with friends again. I was able to continue this for the longest time until I switched from smoking on the weekends to smoking every night when COVID-19 hit. After using weed everyday, the pain came back. I dismissed the pain this time and continued smoking despite the pain I felt. I smoked everyday for around 2 months until one morning I woke up with extreme, uncontrollable itching. This was also accompanied by an extreme fever and chills. A day later, my fever and chills subsided, but the uncontrollable itching remained. I was then sent to the hospital and got an ERCP. The ERCP went very well and my lab results came back looking the best they had looked in a long time, but my itching remained and the pain under the left rib cage persisted. This was very odd to me. I never felt this pain under my left rib cage while I was sober. I would only feel that pain after I smoked sometimes. My doctor told me to take rifampin twice daily for 2 weeks which make the itching go away, thank the lord. It has been 3 months since my ERCP and the pain under my left rib cage has gotten much better but still hasn’t fully subsided. It feels weak and tender in that area. I tried drinking a handful of times after my ERCP and sometimes the morning after I drank, I would feel extremely fatigued, my head would hurt like crazy, and I would not be able to get out of bed for days despite only having a drink or two. I have now cut out all drinking, smoking, and vaping. I am a very fit and physically active, so I am going to continue to workout, play sports, and eat healthy. I am now starting Vancomycin at 250mg 3 times daily. Studies have shown that Vancomycin is very promising. It could make my PSC go into remission. Since I am now in college at a party school, I would like to be able to drink alcohol in moderation without any side effects. I have taken the first semester off college to let my body rest and get better. My plan is to go back second semester after taking the Vancomycin and hopefully I’ll be able to drink in moderation without negatively impacting my PSC. If anyone can relate to my story, tell me about their experiences with drinking, side effects, drinking after taking vancomycin, or just vancomycin results in general. That would be very helpful. Thank you!

PSC is a liver disease. Alcohol is a poison to the liver. 2+2=? Don’t drink, don’t smoke, don’t vape.

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Drew,
Thanks for your honest post. PSC over time will destroy your liver. If you continue to smoke and drink it will only accelerate the disease process. It will even affect your eligibility to receive a transplant when you need one. You are young and your whole life is before you. PLEASE PLEASE stop participating in these activities. You will be extending your life and pushing a transplant hopefully way down the road.
Rifampin was a life saver for me the whole time I had PSC. I also took twice a day for four years. I wish you the very best.

Mark
PSC 2011 / Transplant 2015

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After talking to my doctor, she stated that of course no alcohol would be the thing she had to tell me as my doctor, but alcohol in moderation is okay and I just have to listen to my body. My hope is that the Vancomycin with return my bloodwork to normal and my PSC will stay in remission. Right now I’m still in the much earlier stages of PSC. Some people go their whole lives without a transplant and symptoms. If I have PSC, but it’s not progressing, I believe alcohol in moderation would be ok.

Drew,
Are you under the care of a hepatologist associated with a transplant center or just your local GI? It’s important that a hepatologist be involved in your PSC care. Vancomycin does help but remember that it is by no means a cure for PSC. You really need to seriously consider avoiding alcohol at all costs. At 18 you are still young, but the more you drink, over time you may not be able to stop when you need to. You really need to take this diagnosis of PSC with all seriousness and do what is best for your body, not your social life. I do wish you continued good health though. We are here for you if you need us.

Mark

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Mark,
I am under the care of a hematologist. Thank you for your help. As you can understand, having a liver disease while all your peers drink takes a real mental toll on me for the time being. I understand you and the community are just looking out for my well being. Ill take your advice into consideration. However, I would like to ask, what percent of people with PSC live a completely normal life without needing a transplant or experiencing any long term symptoms? Thanks.

Drew,
There’s no set percentage of those who never need a transplant as it varies really in every single patient. I did pull a statistic from a medline site that may be informative…

Aside from liver transplantation, there are no effective treatments for PSC. In the US, studies suggest that life expectancy ranges from 9 to 18 years if the patient does not undergo liver transplantation. Using different population study models, researchers in the Netherlands concluded that life expectancy may be longer than 21 years from the time when the diagnosis is made.
The prognosis and life expectance is poorer in older patients, those who have an enlarged liver and spleen, and in patients who are persistently jaundiced with elevated bilirubin levels in their bloodstream.

You mentioned that a hematologist was taking care of your PSC, may I ask why you didn’t go to a hepatologist? I thought a hematologist specialized more in blood disorders whereas a hepatologist is a specialist in the diagnosis and treatment of liver diseases. Just something to consider.

Mark

Mark,
It was a typo. I meant hepatologist

I understand that there is a median time range it takes for one with PSC to need a transplant. Does anyone know someone who has never needed a liver transplant due to PSC? I know PSC varies heavily person to person, but its hard for me to come to terms with this disease and I’m just trying to find the light at the end of the tunnel.

Hi Drew!

My daughter was diagnosed with PSC at age 7, and started Vancomycin almost a year later. She’s now 14, and we have found that it has freeze-framed her PSC, so it hasn’t progressed any further. Good advice on this board with respect to alcohol etc. I was young once and I’d hit the clubs 2-4 times a week and dance my ass off. It’s possible to have fun w/o booze or drugs. However, keep talking to your Doc about such options. I have no idea, but maybe oils or edibles are ‘less-worse’?

Hope this helps!

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Thank you for your response md_fisher. I understand I have PSC and can’t drink my ass off. It just sucks dealing with this in the spot I’m in. I’m a young social guy who just started college and I’m surrounded by partying and alcohol. I’ve abstained from drinking for the time being and have never been a drinker because of my PSC. I started taking Vancomycin a few days ago and I’m gonna wait a few months to see how effective it is for me. If it freezes the progression of my PSC, I would consider drinking alcohol in moderation. After college I would completely quit drinking. I know many would oppose my choice but it’s easy to say that from a 3rd person point of view. Most people on this website are older so I hope you can look back to when you were my age and understand where I’m coming from.

Hi, booze like everything in moderation, beer is ok try avoid spirits. Remember PSC is linked to auto immune malfunction worse than any amount of alcohol is stress.
Avoid stress,arguments probs someone else’s probs,walk away and avoid it.
Sorry to say this but quit the dope mate . If you’re occasional you will become paranoid in life = stress.
Using every day assuming it’s home grown it will take over ruin your life.
One day you will be Mr happy next day someone will trigger a violent reaction just because of a difference of opinion.commonplace is to deny this state cos you will blame everyone else for the bad days.
Lecture over . As for PSC docs don’t have a cure, they can ease symptoms but research still doesn’t understand the why of it all why does your body manufacture abnormal cells .

Drew,
Looking back on my life, I had a few symptoms of PSC in college in my late teens early twenties, though I wasn’t diagnosed for years and then the hepatologist told me I had End-Stage IV liver cirrhosis. If there was something I could have done to prevent this earlier in my life, like no alcohol, I would have done it. My hepatologist told me that alcohol kills liver cells. “But, the liver regenerates.” Not from alcohol, he said.

End-Stage liver cirrhosis was a very bad period in my life. My hepatologist said my MELD was 16 and I would need a score of 22 before they would transplant. He told me some people plateau and live the rest of their life without transplantation. Some PSC patients can survive with medical management, while others (me) will need a transplant.

I know this advice is hard for a social, popular guy who wants to be part of your peer scene, dating, etc. One day, you may need every liver cell you have just to hang onto life. Getting a transplant which cures PSC is challenging for many reasons. Suffice it to say you need to keep your liver as healthy as possible. Alcohol is alcohol. It doesn’t matter whether it Bud Light or Jameson. It kills, KILLS liver cells that never grow back.

You are an adult and can make decisions for your life. It’s your choice to take or leave what you have read here. One thing for sure, the people on the site are compassionate and caring. Whatever choice you make, you have a place on this site to share, ask questions and gather information. In many cases, PSC is a long-term illness that makes you adjust your life. Keep learning, asking questions, and above all, never give up!

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Thank you for your sincere response Paul. If you don’t mind, I would like to ask, how old were you when you were told you had end stage liver cirrhosis and how old were you when you needed transplantation?

Drew, I had my transplant at Piedmont. The other hospital in Georgia that does transplants for adults is Emory. I do not know if your doc is affiliated with one of those, but that is what I would recommend. Can’t go wrong with either, but I am partial to Piedmont.

I understand your peer pressure, but they won’t be the one whose liver is already stressed enough.

Paul, welcome back. How have you been?
Jeff

Hi Jeff,
I read all the posts. There are so many good responses, that I don’t reply unless I am really compelled by what someone posted. Helping others is a passion of mine. I’ve had a new life since my transplant in 2012 serving my township as Supervisor, helping people in need, COVID distress and homeless. We live in a rural area with few resources, so we get real creative solving problems. Our support group, Transplant Support Group of Northern Illinois (I’m president) has had to meet via Zoom since McHenry Hospital cannot accommodate us due to COVID. We have a picnic in the park meeting scheduled for September.

My health has been very good. I keep plugging along, take my meds and exercise COVID caution (but not overly). I don’t know about you, but I consider it my duty to pay back for my transplant any way I can. It’s a large part of my life.

I was 61 when they finally diagnosed me with PSC. I was misdiagnosed when I was 40 and 45. The doctor, a GI said I had Ulcerative Colitis and “elevated enzymes, but don’t worry. We’ll watch it.” Every 6 months I had blood tests and 2 liver biopsies, but no diagnosis. At age 53, I had a gall bladderectomy and a liver biopsy. The surgeon came to the waiting room to talk to my wife, asking her I must be a heavy drinker because he found Stage III cirrhosis of my liver. He was perplexed when she told him I did not drink, ever. Again, no PSC diagnosis.

Seven years later, at age 60, I had double inguinal hernia repair. After 6 months, they took an X-ray to see how it was knitting. All was fine, except my spleen was 6 times normal size. I was referred to a GI, who knew it was a spleenamegly, but not the underlying disease. He sent me to The Wisconsin School of Medicine who had hepatologists that were experts with PSC. They diagnosed me. I was very active, healthy and here were five doctors telling me I had End-Stage IV liver cirrhosis caused by PSC and that I would need a transplant to survive.

I was too busy for all this nonsense, but I did follow the doctor’s medical plan for me which included a daily diet of 23 medications and lots of imaging, tests and doctor office visits. Two years after diagnosis, my health suddenly fell apart. I was swollen with fluids, varicose veins developed on my belly and inner thighs, itching, jaundice, memory loss, constant diarrhea, etc, etc. I kept working as a school superintendent until 2010, age 64 and resigned. I was on a cadaver transplant list for 3.5 years, waiting and getting weaker and sicker every day. Finally, my need for a liver was met by my daughter telling the story on Facebook and a girlfriend of hers became my living organ donor. Today, we are both well and leading productive lives.

Look long range because PSC can drag out for decades. Use your brain and try to plan where you might be on the continuum from good to bad health because of PSC. My symptoms first appeared in my teens and twenties. I ignored them at that point, but the disease was silently destroying my liver. My hepatologist could not explain how I lasted as long as I did, but when I crashed, it happened fast. I clung to life based on hope each day that some answer would come along and save me. I got my transplant at age 65, a full 44 to 45 years after I first had symptoms.

Looking back, it’s like a horrible nightmare, but I am now safely on the other side. Sorry if I rattled on way past what your question was. Take care of yourself. Take the long view and put life in perspective.

Thank you so much Paul. You are a true fighter. Your post has impacted me in ways you couldn’t imagine. Thank you for helping me see the light at the end of the tunnel. I wish you the best of luck.

My daughter was dx with PSC/UC at age 15. She started oral vancomycin, eats very healthy, has never drunk any alcohol or taken drugs of any kind. She is now 23 with a normal liver and colon. She graduated from college (while playing a D1 sport all 4 years) and then got her master’s degree. She had a normal fun college life, without substances. You have received some very good advice from others – I will pile on and reiterate that you have one set of organs. Take care of them and do not abuse them. Stop the drinking, vaping, and drugs!! Eat healthy, get exercise and change your life style. You will always be better off not having to have a transplant which is paired with anti-rejection drugs and does not guarantee that you won’t get PSC back in the new liver.

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