I just wanted to reach out to you because I could use a little support from somebody who understands what I'm going through. I was diagnosed with PSC when I was 23, and have struggled to come to grips with it. The doctors made it sound like a death sentence, basically. You know the statistics....liver failure by the time I'm 40 and a scary survival rate for transplants. That fear has never left me. I still don't know how I'm supposed to live a normal life.
The bad thing is that I'm dealing with it in the worst way possible. I drink and smoke a lot, and I can't seem to pull out of it. I've started working out at the gym more recently, but I just can't get over the hump and start living as healthy as I should be.
Can anybody give me a few words of support or wisdom? My friends and family are there for me, but there's no way they can fully understand what it's like to deal with this 1/100,000 disease.
the first step is to admit the problem and you are really brave to do so. People here support each other which is why it's such a great place. Sending you positive energy.
I can't say I fully understand your situation directly, however, I have a little girl (4) with this condition and I too had or should I say am still having a hard time dealing with the emotion and heart break of what this disease may lead. Somehow, I am slowly crawling out of this emotional hole, and realizing that you have to live in the present and make each day the best you can. I know it is hard at times to even think about anything else when you have this ticking over you. Stay positive as much you can and most of all focussed. Have the hope that in the future may lead to new discoveries. Try different things(remedies, diets,& thinking) that may help even how small the difference. I have come to realize in a very short time that the medical world are still catching up to this disease and that not one person can be put into the same diagnosis category- we are all different. Some people have symptoms relief from simply changing their diet, some who use a different drug may also have better results than what they are presently on. One thing to remember- you have a choice and can change for the better-positive assertive thinking. I wish you all the best in your fight. For we all are in the battle for our lives.
My 12 year old son was diagnosed May last year. I understand exactly how you feel. It sounded terrible and I cried that my son would never lead a normal life, marrying, having a family one day. What is worse is that when he got better, everyone just thinks life is normal again. They don't understand all the doctors appointments, blood tests and meds that continue and will continue forever. My son was an active and healthy boy, gifted academically and a promising tennis player. I read about Elena Baltacha, a top 100 British tennis player who was diagnosed at 19. She is living this with disease but still aspiring to her dreams. My son is doing the same, has just been accepted into one of the top academic schools in the country and is building his tennis ranking points again. I figure we are lucky being diagnosed now. Look after yourself, take your meds, keep living your life, because you will be around for a long time. While you are looking after yourself, the medical advances taking place will ensure there is a good prognosis for you when you do get ill in more than 10 years time. Now I sometimes joke to myself that at least I don't have to worry about my son having an alcohol problem. He has the perfect excuse to say no - "It is bad for my liver". When his LFTs were high, I had him not eating fatty food and only cooked with coconut oil. He craved potato chips but knew this was just the way it was, and instead I treated him to other healthy treats that were usually rare due to their cost. There are a lot of people with this disease that make massive changes to their lives in terms of diet. I don't subscribe to that. I recommend you get yourself healthy by avoiding things that damage anybodies liver (saturated fats, alcohol) and then just eats a normal moderate diet once things are under control. You are not going to die from this disease.
PSC is a tough one, for certain. And finding out at a young age and being told the worst possible outcomes for it...that sucks and I wish doctors would get trained in a more effective and helpful bedside manner.
Honestly, I suggest that even though you have a lot of family and friends supporting you, that you find a professional psychotherapist to help you deal with this. I have had PSC for 8 years and there are so many aspects that really have the potential for getting you down, that it was the best thing I did for myself to find a therapist to help me out. Smoking and drinking are not good coping skills for this disease. You already know that - it's not news. And most times family members and friends don't really know how to help you cope in healthier ways, and if someone doesn't have a disease that hangs over their head all the time like you and I have, they are not going to get it. You can find a therapist or counselor you can afford, believe me. Ask around and don't stay with a therapist you don't like or can't relate to. There's a good one out there just for you. I wish you the very, very best. -Dana
Hi Andrew. Drinking was a huge part of my life, prior to being diagnosed with PSC. I actually quit 2 weeks before I found out I had PSC. I quit because I had a drinking problem, my wife was pregnant with our first child, and I knew there was going to be another life that depended on me. There was more to the night that I quit; lets just say it really opened my eyes to how intoxicated/out of control I could get. I had tried quitting several times before, without much luck. So, between that night, a child on the way, then 2 weeks later finding out about PSC, I managed to get it through my head that I didn't need alcohol. One of the most challenging things about quitting, is the social aspect of it. ALL of my friends drink more than they should, and it has really changed how we hang out. But, it has been a positive impact on them as well.
I would say, step back, look at the positive things in your life and try realize that those things are worth enjoying for as long as possible; alcohol won't add to the years. Find things to occupy your mind and time. Don't feel sorry for yourself; don't let it define you. Change your ways, eat healthy, stay fit, find things that are fun and adventurous to do. The healthier you are, the easier a transplant will be to recover from (if you ever need one).
Stay positive and talk to your friends and family often.
I know how you feel, esp. about the depression. I've never been a drinker. But I try to tell myself everyday that I refuse to let this damn disease take anymore away from me. When I was first diagnosed I to was given the death sentence and was told that I would never leave the hospital. But I refused to give in. I just tell myself that I need to do my best for my daughter and pets and keep fighting.Just refuse to quit and give in.
Here is the wisdom, such as it is, that I have accumulated along my journey. I hope it helps.
I was diagnosed with PSC when I was 29. I was told at the time that it was pretty well along in its course and we had not caught it early. I was lucky in that I didn't have any real symptoms to deal with. I didn't do much of anything in response to the news. I guess you could say I ignored it for a while and tried not to think about it. Then, when I was 31, I was diagnosed with cancer in my colon. From the beginning, the doctors told me my prognosis was good and I had a pretty good chance of beating the cancer. I am now 43 (it looks to me like I beat it) and am happier than I have ever been.
After the cancer thing (and looming end-stage liver failure in my future) I chose to take a look at my life and decide what I wanted to get out of it before it was over. I figured that there were many things on my list and I had better get started on them.
I have become a runner (I've completed 3 Marathons), a triathlete, a mountain climber, an attentive and loving father, a great boss, and the best husband to my wife that I have ever been. I love my life. I now work to live and do not live to work. My career and my job are important and I work very hard, but my life is not about the job.
I know that someday I will have to face the unpleasant news that my liver is done and I need a new one. I know that a lot of people never get a liver when they need one. But I say there is no point in doing anything other than taking your life into your hands and doing everything you can do to make it the most meaningful and fulling one you can. There are all sorts of things that life will throw at you that you have no control over. Don't worry about those things. Focus on the things you do control, like your actions and your attitude. Be proactive about your life and not reactive.
Besides being as happy with my life as I have ever been, my labs look great (for someone with PSC). I went from having my blood work done every 3 months to now only doing them once a year. My liver doctor is telling me that the progression of the disease has basically stopped (for now).
Eat healthy food. It just makes sense.
Get exercise. Your body craves it and it feels good. There are lots of ways to stay active and you should keep looking until you find the thing that's right for you. Don't stop searching until you find it.
Work on keeping a positive attitude. A positive attitude is a POWERFUL instrument for change. And a negative attitude will surely steal your happiness and your health.
The more you put into your life, the more you'll get out. And odds are pretty good that you'll get to enjoy it even longer because of the efforts you make. That's win-win.
You can’t control this disease. You CAN control your attitude, what you eat, drink, smoke, etc. Stay positive and thankful for every day of life. Let this change you into a better person than you otherwise would be. I hope you are a believer in Jesus. He will carry this burden with you if you let him. I speak from first hand knowledge about that. After 13 years from being diagnosed I received a liver transplant last May and things appear to be going great. PSC is NOT a death sentence, but it is a life changer. So, let it change you for the positive. I’d love to tell you more about Christ. You can reach me at 502-■■■■■■■■ if you’re interested. If not, at least know that you’re not alone on this journey. You have people who love you in your friends and family. And you have folks here who will share this burden with you also. Don’t let yourself get too down.
Theres such a pull to escape the mental pain of it - never mind the physical pain of it too - and using mind altering stuff can seem like its an answer.
Its allure is in being a quick and immediate fix.
But...we come round with less money in our pockets and headaches and smoking related problems (increased when or if the smoking might include any 'street' smoking stuff too)
I've found a lot of help from 12 step programmes - especially groups looking at how to value and support myself in ways that are compassionate,kind, loving and caring. Giving nurturing care to the Inner Child/ren in a respectful way is challenging to do when and if we've been hard on ourselves but its a whole lot healthier and more rewarding!
It's not easy to do.
But it can change things around from being negative and self-avoidance based to being positive and coming from love instead.
I think you will hear from all of us that PSC sucks! I also bet that most of us have had dark moments and have been at our worst and used our worst coping mechanisms. It was a process to get to a place of accepting that my granola crunching, exercising daily and drinking green smoothies did not prevent getting this stupid disease… It was very difficult diagnosing my PSC because they did not suspect liver disease.
When I accepted it, I worked on a ‘bucket list’ and took my teen age kids on a great European adventure. I did not care about the debt as travelling would be impossible in a few years. On the trip, I realized how much My being around meant to the kids and that cleaned up my attitude. Also, it was hard to ask for help and while some friends disappeared, others showed up to be there.
I am now a year post transplant - my son was the donor. I still have challenges, but I am around to be with the kids and am trying to start a new career dispite my limitations.
The adventure has been a process with lots of losses, and some crazy positive surprises. Sounds like you are at a point when you are still coming to terms with the whole prognosis. I agree with others that have suggested to get a counsellor and seize the opportunity to learn as much as you can from all the craziness. I hope that soon you will be through the dark period and start to see that the you are still alive and that the moment you are in is really all there is. You can make it a good one!
Dealing with PSC is not easy. The first few years I decided not to deal with it. Denial. After two years or so I decided to learn more about the disease, that gave me more a feeling of being on top of things and being pro-active. After a while it also got me depressed. The realizition that PSC patients have serious health problems and all seem to be on a slow (or not so slow) path to an "endpoint" (transplant or death) was too much for a while. I did not go to drinking (which is definately the worst thing you can do for your liver), but to comfort eating. I gained around 40 lbs in that period, untill I was diagnosed with NAFLD (non-alocholic fatty liver disease) because of my over-eating, and I got myself together and started working out and dieting.
So far I proved my doctors wrong when they told me that on average 10 years after diagnoses a PSC patient will reach an endpoint. I am now 11 years after diagnose and still doing pretty well. I run, I work normal hours and hope to keep doing that for a while.
I don't think depression is something to be asshamed of, and I would advise you to find some professional help if needed, or find yourself a "personal trainer" (a friend or family member) who is able/willing to help you get out of this dip.
Good luck. Ask more if you need to.
Chaim, Israel.
Transplants for PSC patients are generally successfull. If I remember well successrates are up to 92%, where the resulting 8% are usually elderly or very ill people.
Andrew, I am beginning my journey with PSC, but a lot of how I will approach this disease will have been learned from having colitis several years ago (I now have a j-pouch). There are a ton of similarites.
The hardest part is the mental part. I learned that having a long term outlook, being flexible, having a strong sense of humor, and acceptance of the situation will help immensely.Getting bogged down in the day to day crap will hurt and lead to feeling sorry for myself, and that is not good. The old alligators and the swamp thing, but the alligators are a real %^$%^&$%^ at the time.
I think we will hit bottom at some point, and everything else will get better after that. One of my lowest points was dealing with a burst ileostomy bag in the hospital at 2:30 AM. I made the conscious decision at that time to stay calm and not freak out. I learned that if I could handle that, I could handle most situations in a decent manner. Having leanred that strength helped make my mental fight much easier.
Please do not give up and stop seeking solice in alcohol, which is not particularly helpful for your liver.Your future is not written in stone. Drugs for PSC are being tested and if you keep your body healthy, you will then be better able to overcome liver transplant complications. Sclerosis of cells of your bile ducts is a very slow process and you may have more time to live than you know. Use that time well.
So far you have felt miserable for 17 years. Hence it is time for a positive change. With that knowledge seek help to overcome your addictions which can only deepen your state of depression. Make the rest of your life count by doing something positive. Tough advice perhaps, but the only one that made sense for me. As far a long life is concerned. quality is more important than quantity. By all means keep physically active while you can.
I echo Mike from Kentucky's message, my faith built over the past 32 years has helped me through so many situations and health scares. I was diagnosed with UC in my late 20s and firmly believed that I would heal and prove the specialist wrong. I was diagnosed with PSC last January and I really could have flipped out. Within an hour I googled PSC and bought supplements to take. I was diagnosed with cdiff last October and hospitalized. My point is that I fight off the bogeyman in my head by reminding myself that God has a purpose for my life, and I let Him guide me day by day and pray for healing. I can't handle my life without Him. Please understand drinking makes the liver worse, and I know you want to be healthy. Reach out for help there, and think about what you have to offer to all who cross your path.
What I want to offer you is hope. This is a disease that varies from person to person, probably something I had long before my diagnosis in November 2006, with symptoms beginning nearly 3 years later. I'm not going to tell you that this disease is easy to deal with as it progresses, it's not. However, I'm just one example of someone whose life was saved by a transplant 32 months ago...at the age of 65. My hopes were originally dashed when one month prior to scheduled donor transplant, I developed a blood clot in my leg which caused the transplant to be moved back 3 months, This new timing did not work out for my donor who subsequently decided to withdraw his name. This meant renewing the search for a donor and that meant 3-6 months before I could even think about an operation. What happened next can only be described as a "miracle". After visiting the hospital to get relief from discomfort, I was discharged and sent home. When I got home, my Doctor called and asked me to return to the hospital first thing the following morning. He explained that because of the blood clot and the way it affected my INR numbers, my name jumped from near the bottom of the transplant list, to near the top. He wanted to do a procedure that would effectively put a filter in place that would capture any clot that might break off during surgery, should my name reach the top of the list. Just prior to performing this procedure, I was told that my Doctor was calling to tell me that a liver was being donated and my name was on top of the list. Eight hours later I was in surgery, 13 hours later I had my new liver...and it has performed flawlessly since. I live a completely normal life, I played golf five and a half months after surgery. I've been blessed to welcome 2 more grandchildren into the world and I plan to be around and healthy for a while. My advice to you is to surround yourself with loving and supportive people, don't try to take this on yourself. Share just the way you have with this email and let things come to you. Accept where you are but remember to keep hope alive. You will be in my prayers.
I wished I knew what to tell you, but if I knew, I would know what to tell my husband. He has it too. And because he is depressed and angry at everyone he perceives as normal, he drinks multiple times a week and smokes. I am a healthcare provider, I try to educate my patients on different diseases, especially ones at risk for major liver issues caused at their own hands. When I try to talk to him, he becomes angry at me, and barks that he is not one of my patients. He is my whole world. I understand his want to be normal, I even understand why he is angry, I would be too. But he knows better, and he had a close call one time already, He says he isn't scared of death and that he wants to ease his pain.
Is this sounding in any way familiar to anyone? I breaks my heart, I don't know what to do or say. Nothing I do or say helps. If anyone has been down this road I am on with him, can you offer any advice? I would love to know what you or someone else did for you to help you out. I am at a total loss for words
My wife and I went to counseling a few years ago in order to fix some problems that arose between us. I was pretty sceptical in the beginning, but it helped us a lot. I know that a lot of men have problems opening up to a counselor, but if he is willing to do that it can be very helpful.
I was diagnosed with PSC about 23 years ago and have been alcoholic all my life. I am 65 years old. It's hard to feel grateful when you really feel like a leper and think everyone else thinks you're one too. Find someone who understands and play the I'm happier than you game. You probably should cut down on tobacco and alcohol too.