Quantcast

Primary Sclerosing Cholangitis (PSC) - Online Support Group

50/50 Chance I have PSC and I'm Freaking Out

Hi Everybody,

I’m a healthy (I do 150+ mile bike rides) mid-20s guy who showed elevated enzymes on a blood test about a year ago.

I was referred to a hepatologist who did a wide array of blood tests, an ultrasound, and even a liver biopsy, which all showed nothing wrong with my liver. I relaxed and got on with my life.

Then recently, I got the results back from an MRI. My hepatologist said that it wasn’t extremely clear and that reading MRI images is more of an art than a science, but there appeared to be some scarring on my bile ducts that would be consistent with a PSC diagnosis.

I immediately Google’d PSC and began freaking out that I was going to die. In a subsequent conversation with my hepatologist, he said that if he had to guess, he’d say it’s a 50/50 chance that I have PSC.

I’m on Ursodiol now and he’s going to follow up in a few months with blood tests to see if my enzymes are down.

I guess it seems like it’s just a waiting game at this point to see what evolves? Could it be months or even years before I know anything for sure?

Mentally, I’m not doing well. I had a screaming fit during an incident with the police; luckily managed to get away to avoid arrest, but then I proceeded to scream so much that I collapsed from exhaustion.

After that, I’ve experienced stomach and lower-back pain as well as bloating, which have caused me to worry even more as I’ve read that those could be signs of IBS and/or PSC. However, I’ve convinced myself that it’s most likely due to the stress and they seem to be getting better. I also read that some of that could be side effects of Ursodiol?

Anyway, I feel kind of weird posting here because a lot of people seem like they are going through stuff much worse than I am (that really scares me), but at the same time, I’m mentally not able to even deal with the possibility, let alone the actual disease.

Matt,
Welcome to the group. I know a diagnosis of PSC is a scary thing for anyone, it was for me and my family. But after the initial shock, it’s now time to shake yourself, calm down and educate yourself all about PSC. You must have hope, you must live life, you must plan for your future but you must not give up and let yourself fall apart! You must always keep hope alive no matter what the final diagnosis is.
Many of us here in this forum have been through the whole process from diagnosis to transplant, and I can honestly say today that my life has been the better for it. Transplant is nothing to be all that afraid of if it should come to that. Things could be a whole lot worse for you. You could have cancer, you could die tomorrow in a car accident, but you CAN and MUST plan on living through PSC and fighting it with all your might.
We will be here with you all the way to encourage you and give you advice as you ask. Just take some time to calmly take all this in. You will find the more you understand about the disease the more you will realize you can do this and you can make it through all the ups and downs. One thing that will be very important is that you need to involve your family in all this or some very close friends. You need to have folks that will be there for you to love and support you through this especially when the days are more difficult. Get a level-headed family member or close friend to go with you to all your appointments. You need someone that will be able to ask those hard questions you are afraid to ask or forget to ask. Someone to take notes and just be there for you.
Take care and keep in touch!

Mark
PSC 2011 / Liver Transplant 2015

Thanks Mark!

I think part of what makes this so difficult is that I live across the country from all of my family and my work/insurance situation is constantly changing.

Obviously, I will have to live with it if it turns out I have it, but unless everything I’m reading about PSC is completely wrong, as somebody diagnosed in his 20s, the chances that I’ll live a normal lifespan (80 years) are significantly less than an average person, which I really don’t think I’ll be able to accept anytime soon.

Anyway, it’s really great that support groups like this exist; hopefully, I won’t need it because I don’t have PSC, but if I do, I’m really appreciative of everybody’s willingness to help.

MSNYC…
I truly hope you don’t have PSC, because it can indeed be a scary thing. But, if you do end up having the diagnosis, perhaps this initial “scare” can be a positive to help you through it. Please take Mark’s words to heart, particularly “Things could be a whole lot worse for you. You could have cancer, you could die tomorrow in a car accident, but you CAN and MUST plan on living through PSC and fighting it with all your might.” Don’t be afraid of your future. Plan for it… even if difficulties arise.
In the meantime, I’ll be praying that you don’t have PSC at all! :slight_smile:

Hi MSNYC,
Mark put it well (as always). Everyone who gets the diagnosis goes through the same reactions. The truth is PSC runs its course differently in every person. I was diagnosed in 2005, mostly I feel fine, had a couple of episodes with bilirubin spiking, but generally I’m well and enjoying life. Others go to transplant much more quickly. There’s no way to know exactly how things will turn out. And while I admit the transplant idea is still daunting to me, many others on the forum have had a transplant, and are doing very well. It maybe hard to grasp now, but you are very resilient and after your initial shock, you can move back to enjoying your life.
Steven

Hi MSNYC,
I can relate to much of what you are going through (except for escaping from the police – I’ve never done that). For me, it took several years of monitoring before a PSC diagnosis. My enzymes have been elevated for about 8 years, but so far, no significant problems – the liver is ticking along fine. But the prospect of a downward spiral is always out there weighing on me. Not knowing really really sucks. I try not to think about it every day. I hope your hepatologist finds it to be something more benign than PSC. If it does turn out to be PSC, don’t despair. The news is not all bad:

  1. There are things you can control: exercise (if you are biking 150 miles it sounds like you are on top of that one); eating right (low inflammatory diet…after all PSC & IBS are both inflammatory diseases); managing stress; getting enough sleep; maintaining/establishing strong relationships; and avoiding acute lead poisoning by not running from the police (that one is fairly specific to you : ). I am not aware of any research showing that these will improve PSC symptoms or cure it, but there is plenty of research to establish the over-all health benefits of these and other lifestyle-type factors

  2. There is research going on – you read it whenever you search on PSC: NO KNOWN TREATMENT. It’s depressing. But, there are massive ongoing research efforts to learn better how these autoimmune diseases work. Some of this research (not enough!) is focused on PSC. There are a few drugs that may be effective, but the science isn’t in yet. If you have PSC at an early stage there is a pretty good chance that there will be a treatment in the coming years that you will benefit from.

  3. I defer to all of those on this site who have received the gift of a liver transplant – but I understand that the procedure is effective and survival is high, and I have read many accounts of a vastly improved quality of life.

I don’t see any reason why you shouldn’t go ahead & plan on living to 80 and beyond. That is what I am doing.

David

1 Like

Matt,

My 23 yr old son was diagnosed with PSC and Crohns 2 years ago. He has no symptoms for either, so we have been lucky. He takes 1500 mg of Vancomycin every day, his enzymes have normalized. A recent MRI showed improvement in his small ducts and mild to moderate scarring in his main bile duct.
Internet searches really do not give an accurate picture of PSC. Many on this site can tell you that not everyone progresses to liver failure. You may very well live to 80 and never suffer a symptom. You also may, at some point, need a liver transplant. If you do, and you receive a new liver bear in mind that it is a highly successful transplant surgery. With a new liver, making it PAST 80 years will be a breeze.
It is NOT a death sentence.

Thanks OzarkScotty, sgrabiner, and kayakdave!

Kayakdave, I should have been more clear: the day I got the news I started screaming at a cop after he gave me a bougus bicycling ticket, and he was about to arrest me if I didn’t stop screaming at him. Luckily I managed to gain control and leave after he gave me the ticket. I didn’t run away from the police!

That’s good to hear from both you, sgrbiner, and jace0221 that your experiences with PSC have so far been pretty uneventful.

I really need to stop looking at anything about PSC on the internet because it obviously doesn’t paint the full story. For instance, I read that over half of people that have liver transplants die within 20 years. However, at the same time, I know that a lot of those people might have been older and sicker to begin with and were being transplanted 20 years ago when technology wasn’t as advanced as it was today.

Still, the odds of dying at a younger age than normal seem pretty high unless everything the medical establishment has said is completely wrong, and there doesn’t seem to really be anyway to sugarcoat that fact.

I think the big issue is that regardless of the diagnosis, I’m not in a great place in my life now. If I can work to change that, I feel I’ll be more able to accept the diagnosis if I indeed have it.

I absolutely agree with Jace…my 20yo daughter is on 1000 mg of oral vancomycin and it had been a miracle…best taken as early as possible. It has allowed her liver to heal from near cirrhosis to totally normal. I will forever be grateful to Jace for passing on name of the dr. Google PSC and oral vancomycin and push for it. Worth a 6 week trial to see if it makes a difference. Or look into the new Mayo Clinc trial you can apply to. Good luck

Joki and Jace,

That sounds really hopeful. I’ll ask about that the next time I see my doctor.

Thanks!