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Primary Sclerosing Cholangitis (PSC) - Online Support Group

How do you cope with PSC?

I got diagnosed with PSC back in 2012 and probably had it all the way back in 2009 – 2010.
I remember when I got this diagnosed how it felt like a punch to my very core. I could literally see all my dreams and hopes for the future crumbled in dust.
At the time I was 24 and I remember how I felt like it was so very unfair after I already had been diagnosed with UC back in 2009 when I was 21.
As you can see at first I took this news very badly and ended up with depression and panic attacks and I had never experienced a panic attack before in my life at that point. I talked with a psychologist and it helped a bit but I still felt like everything had ended with that dumb diagnosed. Especially after reading all about the disease on internet which is something you should never do and is of course the very first thing you do when diagnosed with a disease you didn’t even knew existed before that very moment it gets thrown right in your face.
I really couldn’t see a future ahead of me and at that time I had already accepted the fact that I might never have children. I feared how I would never be able to support myself because at that time I was in a lot of pain nearly every day and I didn’t get more than a couple of hours of sleep due to waking up in the middle of night either from pure pain or from that infernal itchiness.
How would I be able to get a job with that cursed disease permanently marked in my forehead and those strong symptoms which seemed to haunt me day in and day out.
Luckily at that time I did had a job which I had acquired before I started my studies and at that time had fulltime because I had pass my final school exams for my education and kinda were looking for a apprenticeship at that time to be able to finish my education.
I was truly and really lucky when the doctors prescribed me ursodiol that it turned out I was one of the people it had a great effect on. For a month it was a bit worse off but my doctors warned me about it and said it as was normal till the ursodiol began working and they were right. All my bad symptoms disappeared like a near miracle.
Nevertheless, I was still depressed and had those dumb panic attacks. Because even though I was really lucky the medicine worked on me I still felt like my world had crumble with no chance of being able to rebuild it.
Because even though it worked the doctors had still told me my duct bile was really badly damage and at one point in my life I would require a liver transplant. Plus I had a higher chance of developing what felt like a billion kind of different cancers.
Life looked quite dim at that point even though I could have been worse off. That was until an opportunity arose.
It was around June 2012 I think. At that time I was still looking for an apprenticeship which seems really hard to come by. I had already been to a lot of interviews but had been turn down every time.
It was then the school for the first time wanted to try sending people aboard to get an apprenticeship.
At the time they were focusing on Malta. None of my other schoolmates wanted to try because they either had children, a man in their life or just find it a bit terrifying to be that far away and work in a foreign country. But for me I saw it as golden opportunity to get away from everything especially the hospital.
Before planning on going I talked to the hospital and they were fine with it because my health was a lot better since I began on ursodiol. (It was just my mental health it was wrong with :P)
Of course it was an enormous change to suddenly live 3000km away from home in a completely different country with a new culture and climate so different from my own country (Denmark). It helped however that at that time I really felt emotional numb due to the depression from the impact of diagnose.
From September 2012 – August 2013 was truly the best period of my life, not only did a get a lot of working experience which help me finish my education, but I also got a wonderful culture experience very differently compare to just being on a vacation. And I got friends for life and life experience beyond anything I could had ever imagine gaining from this trip.
But perhaps most importantly I learned to cope with this dumb disease after getting a bit away from everything so I had time to reflect on it and learn to accept living with my disease being a part of my life.
I have learned when your mortality comes into question and you learn to cope with it, you actually learn to live life better. Not by doing a lot of different thing or try to participate in as many events as possible. No by actually truly enjoying and appreciating every bit of life from just waking up in the morning, to go on a big journey to just being able to relax on the couch with a good book in your hands or enjoy the company of some very great friends.
Of course there will still be days I fear for my future and or when my disease will flare up again. But you can’t really avoid that. It is then I turn to belief, not the belief of religion, but in the belief of science will find a way of curing this damn disease. Because it is not a question of IF there will be a cure it is a question of WHEN will there be a cure. However, whether it is the belief of religion, science or spirituality then belief is and will always be the strongest tool you have against learning to cope with a disease. At least that’s what I learned.
I have made a deal with my liver and bile duct, it play nice until a cure is to be found.
I know there is always a chance of developing cancer, needing liver transplant and other complication. But then again everyday there is a chance of getting hit by a bus just by stepping outside the door. Or tripping on bathroom floor hitting your head and die.
When learn to put it like that it seems a bit easier to cope with as well.
Now I am 26, have Academy Profession (AP) Degree in Chemical and Biotechnical Science. I have a job as an analyst in a medicine company even though it is only a temporary position at the moment I hope for it to turn permanent around this summer otherwise I just have to find a new job but at least I will have more experience added to my CV. I have brought my own apartment from savings I had worked hard to get and hoping to get the bank loan paid out before my temp. position is over so I only have the debenture left.
Yes I still have episode of pain but they are mostly mild and very rare. They nearly only seem to shown if I either eating something really bad or been sitting/lying very badly for some time.
And a bit of itchiness here and there but that is a rarity too. Compare to what I been through earlier this time of my life seem like paradise.
Because I learned that it is not me who is a part of this damn disease it is the disease there is a part of me.
Staying positive can be difficult especially when it is really bad, but it does pay out with a better life quality.
My doctors are quite positive now as well. Instead of saying I might only have 2-3 years before I require a liver transplant as they said back before I began on ursodiol in 2012, they are now saying they wouldn’t really worry about it before I get around 50 or something. I won’t really worry about that though because I know there will a cure before then. And if I should be so unlucky it gets bad before it happens then it will be a problem I will have to face when it comes (if it comes), but not now because now I am too busy just enjoying the life I have.
Of course I still get my yearly checkup both with a colon scope for my UC and a MR scan for my PSC.
But I gladly do that to catch any bad stuff before it gets real nasty.
With all that said I also learn it is also important to sometimes talk about your fears surrounding PSC because just because you accepted and learned to reason with it for example with belief.
It doesn’t mean the fears disappear; no it will always be there because it is a part of rationality. But if you talk about them and then put them back on the “brain” shelf they will get the attention they require so they won’t suddenly pop out from the shelf and into your mind and nightmares. Because believe me fears will get the attention they requires so you might as well give them it on your conditions.

So with my story told on how I learned to cope with PSC I am now curious of how you guys learned to cope with PSC…
And to all you haven’t learned to cope with PSC if you feel like talking you are always welcome to contact me.

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Marlene, When I was going through colitis and resulting colectomy, I learned to focus on the future. You still have to get through the day-to-day stuff, but by focusing on the future, I got by.

Now with PSC, I am putting the lesson to work again. There is a fine line between acceptance and denial, but I know that I will get through the daily stuff. But reality is likely going to hit hard next week, when my liver doc tries to get me listed on the transplant list. If approved, that will be a cold dose of reality that I have not had up to this point.

But I know that I will still have years to go (hopefully) before a transplant becomes necessary.

It looks like you are doing a good job of controlling your life, which is always a good thing, instead of letting a disease control it.

That will help you a lot as well.

Jeff

Hi Marlene H:

The link to my story is: http://www.livingwithpsc.org/forum/topics/advice-for-newly-diagnosed-psc-ers?commentId=6288168%3AComment%3A34476

It will give you hope. I was diagnosed at age 31, but I believe I already had PSC six years earlier than that. I had a liver biopsy at 25 which showed a fatty liver, but no specific diagnosis.

Now I'm 48, and the gastroenterologist said I may need a liver transplant in five or ten years. However, he said that eleven years ago too, in 2004. I have cirrhosis now, which I've only known for about a half year. I'm actually doing quite well, knock on wood. Exercise is critical to this. I didn't exercise much in my twenties, and I hope everybody will heed my advice to exercise. The endorphins help you cope with the stress. An active life can help, even if you can't do everything as well as the next person. Not frittering away your energetic times can help. For instance, only watching tv when you don't have energy to work is a good idea.

The stress of PSC is quite high, as you've discovered. The big question for me is how long will I live? But the secondary question is how will I cope with a worsening illness? Both are imponderable ponderables.

I don't have panic attacks but I'm often very nervous. Do the illnesses (PSC and UC) cause the nervousness or does the nervousness come from my personality? Going to bed on time can eliminate some nerves. Drinking the coffee that my gastroenterologist recommends in the morning also eases night time worries.

You can sit in a mall and see a young handsome man and say to yourself, that person has his whole life ahead of him. What a lucky person. I don't have that, you can think. But it could be just the opposite. You could be the lucky duck who outlives the young person. My roommate was 29 when she suddenly died from asthma. Her brother was 18 when he died in a car accident seven years prior. Her parents only had two children. So you see, we don't know the future.

Goal setting helps some people. I'm less goal-oriented and more content to just smell the roses now.

Thanks for your long story. It was very interesting. I'm sure you will help many other people before you're plucked from the field of life. The older you get, the easier this illness becomes psychologically, because many people have health conditions in their 40's and up, but not many 27 year olds have conditions.

Wow. There are many similarities I share with your story. I was diagnosed just 13 months ago. PSC was found through chasing answers to crazy bloodwork. I felt very itchy, but had explained that away in my head. After beginning to take Urso, the itching is gone. I have typically dealt very well with stress, but I must admit that having my first panic attack was eye opening. I had begun to see a chiropractor that is very educated and holistic in his approach. I have a job that is physically taxing and I wanted to strengthen muscles to avoid the headaches that I used to take ibuprofen for. I am now taking VERY few medications at all. My chiropractor gave me helpful hints to dealing with panic. Fortunately, it hasn't happened again. It has taken much time to let it all sink in. I went through that whole mess of emotions too. I had been married only 3 years at diagnosis and felt that my husband would be better off to go on and start living without me as to avoid the issues later. That is still hard for me to think about. He is my rock. He is SO positive that it is irritating at times! I love him for it. I know now that there is NO reason to stop living your life, but every reason in the world to live it to the fullest. You are right. Any person could meet his demise at any time. We just have this crazy thing looming out there. It has certainly made me appreciate life differently. It has made me an advocate for organ donation. PSC isn't even on my mind most days at this point. There may be a day that all changes. I don't want to waste time waiting on that day. I can do many great things.

I also started drinking a cup of coffee in the morning. It has seemed to elevate my mood as well.

My heart and prayers go out to all who are currently struggling daily with this disease. It is a rough one.

Stephen, there is a lot of wisdom and experience in what you wrote.

Jeff

Hi Marlene,

Just wanted to thank you for sharing your journey.

Romeo

Marlene Thanks for sharing your story, is quite encouraging for me right now.

About twice a month, my wife hits a down moment and says she does not want me dying on her because of psc.

I do not really know what to tell her as there are no guarantees, so I tell her I will not leave her willingly.

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That's a tough one for all those spouses out there. My wife lost her first husband fairly suddenly to pancreatic cancer. I worry that this history will make things too difficult for her to cope as my PSC gets worse A Doctor I saw at the Mayo Clinic (a PSC expert) sat me down and said that PSC is not going to be the thing that kills me (I'm nearly 50 now). There are no definitive answers, of course, but sometimes a hopeful fact or statement or fact here and there can be a lot of help.

btw, I have only recently begun referring to it as PSC - previously I have referred to it as "this thing".


JeffDC said:

About twice a month, my wife hits a down moment and says she does not want me dying on her because of psc.

I do not really know what to tell her as there are no guarantees, so I tell her I will not leave her willingly.

Dolphin, there is a lot of wisdom in the phrase, "one day at a time", although it can be pretty tough to do on some days.

I learned a long time ago that any day out of the hospital is a damn good day. That helps keep me in a good perspective , although my wife has not learned that to the degree I have.

Jeff

Dolphin,

I think that my doctor was trying to provide some encouragement after some less than positive test results indicating, for the first time, that I my PSC looks to be taking a more aggressive course. He was also educating my wife and I about potential procedures (to address blockages) and about what a transplant would involve. These issues have not been front and center for us at this point, so I can't know the hardships and difficult decisions that you and your husband must be facing. I can only second what Jeff wrote about taking it a day at a time, and let you know that our encouraging thoughts are with you and your husband.

Dave

Dave, My husband and I just found out his PSC has progressed. He was diagnosed 5 years ago and up until this week were told there had been no progression. It was quite a shock to both of us. He is 61 and would like to retire at 62 but with insurance we are afraid. I have insurance but it isn’t good insurance. We haven’t been referred to a hepatolotist but the GI offered to make the referral. I think it would make us feel better to get established with a transplant center in case the PSC ramps up rapidly. Our doc scared us when he said he has a patient that was diagnosed 2 years ago and he can’t work, has all kinds of problems, etc. But then he tells us my husband has done better than 90% of people with this diagnosis but will need a transplant in 5 years. I am hopeful the GI is wrong as I can’t imagine retiring and then having to face getting deathly sick while waiting for a transplant (if we even get one). PattyJ

Patty,
If I were you, I would bypass his GI doctor, find a major hospital near you that does liver transplants and go get an appointment with a transplant hepatologist there. Most will not require a referral. He really needs to be under the care of a hepatologist, GI doctors are not usually qualified to treat liver disease well. What is his current MELD score?

Mark
PSC 2011 / Liver Transplant 7-2015

Thanks for responding! I don’t know his meld score. He hasn’t had an INR for quite some time. I am hoping we can get up to IU sometime soon. We are in Indiana.

I really appreciate you sharing your story. I’ve been trying to sort through those questions for myself. Reading this has been helpful for me.

Counselling has helped me with the psychological side of things. I would get really anxious about how my life suddenly became dependent on the health of my liver and I didn’t know what course it would take. Counselling definitely helped me sort some questions out I had bouncing around inside my head.

I am working on calling PSC by name also. I tend to call it the creeping evil or just my disease or the disease.

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Well one thing that will help avert the stigma associated with most liver diseases would be something like “I have an auto-immune liver disease that attacks the bile-ducts of the liver eventually requiring transplant. It was not caused by drinking alcohol.” It helps to make folks more at ease knowing this was not something you caused but is just a rare disease that happened to you and you need their support.

Mark