Taking the next step

Welcome New Member Introductions
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Hello Everyone,

I am new to this support group, and thats exactly what I’m looking for, support. I have felt really alone through this whole diagnosis because I don’t feel like anyone understands. Here is my story, thank you for listening (I apologize that it is long, I just have a complicated story):

Back in 2012 is when it all started. A simple day of trying to get through my college classes turned in to excruciating pain that wouldn’t go away no matter what I did. 5 days later, and a whole lot of pain meds in the hospital, I found myself being taken to the operating room to have my gallbladder removed. After this experience, I hoped that I would never find myself in a hospital again.

It was only 8 months before I was back in the hospital. It was the matter of 3 hours from when the pain started to me barely keeping consciousness as the ambulance arrived. This time it was Pancreatitis, caused by the narrowing of my common bile duct. This earned me a 2 week hospital stay. It took me having to fire the first doctor who said “lets wait and see” and a week before the new doctor ordered an MRCP, which led to an ERCP. After the ERCP, I instantly felt better and couldn’t wait to go home. I didn’t know at the time that PSC was even a possibility. My mother didn’t tell me, until much later, that the specialist who performed my ERCP, who had a terrible TERRIBLE bedside manner, had taken her aside afterwards to say (and this really what he said) “Your daughter has a liver disease that will require her to have a transplant in 5 years. Have her come to my practice and we will talk more” and proceeded to walk away to his next case. Imagine, a mother of a 20 year old hearing this, no explanation. No nothing.

Fast forward through a relatively normal 3 years that included multiple GI appointments, colonoscopies, and a misdiagnosis of Chrons to November 2016. A random fever, and overall exhaustion, that had gone on for far too long sparked a trip to my new PCP, who just so happens to be the doctor that got me out of the hospital the second time. Side note: I really owe everything to her. She’s saved my life… My liver enzymes have always been mildly elevated since the second hospital stay. But all of my other doctors never really thought anything of it. We decided to run some random blood work to see if we could find the cause of the fever, and sure enough, my liver enzymes had jumped almost 50 points in a month. Every one knows the process, abnormal blood work leads to ultrasound, which leads to MRCP. Ill never forget the call from my doctor. “…I’m sorry. Its PSC.” My heart sank. She proceeded to read me the MRCP report, but of course I didn’t even process what she said. I was just numb. I couldn’t even ask her what I should do.

Its been a year since my official diagnosis. Only my family, my boyfriend of 4 years, and a few close friends know what is going on with me. I now have a specialist in Boston who I see every six months or so. I had an ERCP back in May, and after 6 months, my fever broke. I was feeling better for awhile, but recently have started feeling badly again. My fever is back, I’m exhausted, and I’ve been having a really hard time with food. Seems like more often than not, I have an achy uncomfortable pain following a meal. (Is this normal?) I haven’t experienced any itching yet, guess I’m lucky there.

I just had my yearly blood work, MRCP, and colonoscopy. Guess the symptoms came back just in time. I meet with my specialist next week and hope that everything is looking okay. My blood work has never been indicative of the severity of the stricturing within my liver, just imaging. So we’ll see what he has to say.

Sorry for the lengthy description, and I thank you for taking the time to read my post. I am looking for support through all of this because its hard to talk to someone who doesn’t understand. I’m looking for advice, how to manage the exhaustion, and even how to cope with this. I’m only 25 years old, and hope that I am strong enough to get through this. I know it has been a year, but I still am having a hard time with this. I hope it gets easier.

Thank you again.

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Klynn
Hey not sure about offering support, but maybe a person at the same stage to bounce off.
I was diagnosed about 3 months ago, after my second MRCP. My first MRCP was 5 yrs prior which came back as possible PSC but they dismissed it and now they have said yes you do have it and by the way that was PSC 5yrs ago so my clock started some time back.

I havnt got the symptoms everybody else describes, but I am a sun lover and some posts describe how the sun light helps reduce itchy so maybe that is why.

Like you I was diagnosed with chrohns and treated for a few years with nothing working then lost my entire colon to toxic mega colon and they declared I had colitis so I was “cured”. Turns out I won the lottery and am one of those over 40 yrs male who are 70% more likely than the rest of population to then also get inflicted with PSC.

Anyway the future is unknown and I like you am hoping that some of the answers that doctor cannot give and some of the questions I must demand of my doctors I can gleen from this community.

I am a glass half full type person (Australian term for positive) so i believe that this is the best way to fight this thing as I can sook (feel sorry for myself- see teaching you Aussie slang already) about my hard luck I have had health wise once I am finally in the ground (dead).

I will watch for your posts and good luck with your journey.

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Klynn,
Welcome to the group and thanks for introducing yourself. It helps us to know where you are coming from so we will know how to best give you that support you need. Please feel free to reach out here on this forum for anything you don’t understand, need further clarification on or just want to chat as you go through life with PSC. I’m glad to hear that you have your family informed about your diagnosis. It’s very important that you have a good support system in place now while you are relatively symptom free, so if/when things progress they will know what to look out for and how best to help you. It’s important that you educate them as well on your disease. I would encourage you to take someone with you to your hepatologist appointments so they can take notes and ask any needed questions that you forget to ask. Support with this disease is key!
A note about fever. If your fever goes over 101 or 102 you need to go to the ER as you may have a biliary infection that will need to be addressed. Make sure that you tell them you have PSC liver disease, and keep in mind you may have to educate even doctors and medical staff at times about, "What is that?"
Exhaustion, nausea, smells of foods even cooking or thinking about it are all symptoms associated with PSC. It is though that you have a good intake of Protein especially when you start noticing muscle wasting and weight loss. A good exercise regimen of at least 30 minutes a day 5 days a week to maintain your core strength is very important.
Once again a hearty welcome to you. Take care.

Mark

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Klynn,
We all go through our own stages of psc. I’m glad you are not itching, which I think my first symptoms. Several winters ago, I noticed my shoulders were itching, which I chalked up to dry winter skin. Two years later after the psc diagnosis, my shoulders were itching in the same places.

Gaz, how long was it from when you had your colectomy to your psc diagnosis? Mine was in 2006, and psc was diagnosed 2013.

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Jeff.
I had the colectony in early 2013 and the first MRCP in late 2013 which came back as possible PSC, which was then confirmed in late 2017.

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Thank you all for your replies. I have been very lucky so far to not have started itching. I’m sure that is probably the worst symptom. I go see my specialist on wednesday and will get the results of the most recent MRCP to see if I need another ERCP. I will keep everyone updated.

thank you again for all of your support.

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Klynn, you are going to get through this PSC situation. Reading your story reminded me of my own first contact with my diagnosis. I was referred to a teaching hospital to discuss, what I thought was an enlarged spleen. Five doctors were there and after introductions, they said I had PSC, End-stage IV liver cirrhosis and needed a liver transplant! They were Hepatologists and transplant surgeons. 12 years earlier, a GI missed diagnosing PSC. I had UC and elevated enzymes, but he missed it like so many doctors do.

I won’t rattle on with my case, but let me suggest you link up with a Hepatologist at a transplant hospital that does living donor transplants. PSC patients can live a long time before they need a transplant, if ever. I was one who received a living donor liver transplant. Many times, PSC patients do not qualify for a cadaver organ because of the liver chemistry scoring protocol called the Model for End-Stage Liver Disease. If you get registered at a hospital that does living and cadaver transplants, your chance of getting an organ go way up.

You are among friends on this site. I found it before my transplant and still read and post 5 and a half years later. Never give up. Never! That’s most important. Keep you loved ones close around you. Share your fears and victories. You are in this for the long haul. You can do it. Find something to be grateful for every day. Give thanks! Best always,

Paul,

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Thank you all for your support. I apologize it has taken me so long to respond. After my visit with the doctor, I just wanted to spend time with my family and enjoy the holidays.

So, the doctors visit. The good news is that right now, I don’t need another ERCP. MRCP did show more stricturing, but not enough to rush back in. My liver enzymes have gone up yet again. I think that is the most frustrating part of all of this. That no matter what I do, things get worse. They have more than doubled in a year. Thats the scariest part. I know that they all say that theres no way to predict how fast or slow this disease progresses, but it seems like mine is progressing more so than not.

But in response to the symptoms I’ve been feeling, they’ve started me on ursodiol. I know it may or may not help people, but I think it is helping me at the moment. My abdominal pain has gotten better. But the exhaustion never seems to go away. Does anyone have any suggestions to combat the exhaustion?

Thanks for listening again.

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Also, over the last couple of months I have been experiencing hand tremors. Has anyone else experienced this? I dont know if its related to my liver or not so I figured I would ask.

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Hello, my name is Vasni, i was diagnosed one month ago and this group has helped alot in understanding what comes next and to not feel as scared. I am a 24 years old and am a single mother of a 2year old baby, and what scares me the most is leaving him without a mother -since his father is not present.

I first had symptoms at age 15 but doctors could not find a cause so they said it would regulate. Fast forward to the winter of 2014, i got horrible itching, again doctors gave me no answers and didnt even try to help. it went away within 5 months, but the next two years i got itching again from Nov to March/April… i thought i was allergic to the winter ? (LOL now i think how silly i was) recently my MRI showed bile duct narrowing and i was diagnosed with PSC.

i NEVER understood why i felt so tired most of the time- my family thought i was just lazy lol- but i have noticed that drinking two cups of coffee a day have helped alot in feeling more energized and it helps my digestion too! so double plus! Never been a coffee drinker before this, but its helped. I take dark coffee with coconut oil powder- no sugar no milk nothing else- its called bulletproof coffee. Maybe give it a try?

i also read other posts about how Vanco has helped many patients with PSC. i will bring it up at my appointment and see what my doctor says. Maybe you can look into it too. Sorry for the long reply! Wish you the best, keep us posted on your progress and never give up, i think its very important for our well-being and for our bodies to be positive :slight_smile:

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Klynn,
Glad to hear that you don’t have to have another ERCP so soon. They are certainly no fun to go through. Regarding hand tremors, yes, that does come as liver disease progresses. When you hold your arms straight out in front of you with palms out, do the tremor much in that position. That’s one thing my hepatologist always checked when I went in for an exam. Don’t fret too much over it though. Have you started having any leg or foot cramping at night yet? If you do, I’d encourage you to take at least 400 mg if not 800 mg of Magnesium Citrate each day. If you only take 400 I’d wait till closer to bed time. It also helps to keep some little bottles of Tonic Water with Quinine in it. That will also help you get through bad episodes of cramping. It tastes nasty, but over time you’ll get used to it.
Regarding exhaustion, it’s par for the course with PSC. But I’d encourage you to try and walk at least 30 minutes a day inside or out to keep up your core strength. It also invigorates you which I think helped me with the fatigue issues. I’d work all day and come home and just flop in my recliner and sleep till supper sometimes. I’m so grateful my dear wife and daughters were so understanding and helpful during those years. Just let your body talk to you and rest when you need to and go when you can.

Mark

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Thanks for your reply Mark. Thankfully I do not have any cramping at night yet. The hand tremors are new over the last few months, but of course I forgot to mention it to my hepatologist. I have my yearly physical with my PCP next month so Ill bring it up to her.