Just diagnosed with PSC

Hi. My name is MarLena and I am 47 years old. I’m a wife and a mother to two teens (19&15). I was diagnosed with PSC last week when I had my second ERCP to remove a stent and do a biopsy from a month ago when I was in the hospital with cholangitis. The doctor had said he was concerned about the narrowing of my bile duct that had blocked itself off and created an infection in my gallbladder, so he wanted to do another ERCP to see what was going on past that once the infection was gone. I was expecting my next step to be the removal of my gallbladder, but came out of recovery to have my husband tell me that I have a liver disease. Not what anyone wants to hear!
I only know what I’ve found online about PSC, which has pretty much freaked me out. I don’t have a follow-up with the GI doctor until the 8th of Nov., so I’m still somewhat in the dark about what’s going to happen and I don’t know what the results of my biopsy is.
I have pain almost constantly in the area of my liver/gallbladder and I’m trying to tough it out, but wonder if this is how PSC just is or will I ever feel relief? Thank you for letting me join this group, I’m going to start reading posts to see what everyone else is going through and hopefully prepare myself.

Hello, MarLena.

I’m sorry you had to be introduced to this diseases. I hate the fact that you even had to join us but I’m so very thankful you have found us. Welcome to this community! I know you will find useful information, thought provoking articles, others that identify with you, and perhaps friends that will encourage you in your walk.

Step One: Don’t self diagnose with Google. Please. Educate yourself but stay clear of the rabbit holes. It is serious - yes. However it is not the death sentence! The folks here will tell you that. Life can be lived with PSC!

Each person/case/story really does vary from the next. I look forward to positively contributing to yours in any way I can. This week being PSC Awareness Week (10/23 - 10/29) I hope you get to read the good stuff out there not just the overly frightening and outdated stuff.

Cheers to you taking steps to actively participate in finding help for yourself and your family.

.

MarLena,
Welcome to this PSC community. I am glad you found us yet I’m sorry for your diagnosis. One of the biggest goals right now you need to have is for you educate yourself all you can about this disease. I know how scared you are and all the things that can go through your mind as you think about your children, your family, etc. Stop and take a breath, there is hope, there is a future for you and you can live to see those children marry and hold your grand babies in your arms. We have been where you are and I am here to tell you that you can make it. One of my first recommendations to you is to educate yourself all you can about PSC. Ask questions of the group, research the disease, etc. Another first step I will encourage you to take if you are not already under the care of a hepatologist you need to do that as soon as possible. I’m sure you love your GI doctor but 90+% of them just are not qualified to diagnose and treat liver disease properly. Find a good one at any hospital that does liver transplants. Many clinics at transplant centers do not even require a referral. Also, with the ERCP’s make sure the person doing it does this every day not just occasionally. It’s a very invasive procedure and needs to be done in the hands of a specialist that does this all the time, not just your local GI. Let us know how we can help, we are here for you.
-Regarding the pain you are experiencing, it may be right now due to the two ERCP’s you just had. Ask your doctor for some pain medication if you need it. They should have discharged you with some as well as an antibiotic after the procedure as the risks for infection are there.

Mark
PSC 2011 / Liver Transplant 7-2015

I’m sorry to hear you have PSC, but would encourage you to listen to the people on this site and read past posts. I was diagnosed with small duct PSC and just last month was told it is not small duct, but large duct. I have also recently had 2 ERCPs trying to put in a stint, however I have an abnormal entry to my ducts so no stint yet. They are sending me to Indiana to someone higher in the field to try one last time. It is very scary and at times overwhelming. Anytime I have a question, I come here first to see if I can find an answer or to see if anyone else has felt the way I have felt. It’s good to know your not alone. I encourage you to find a doctor that you are comfortable with; I knew my doctor was the right one when he gave me his personal cell phone and told me to use it anytime I had any questions or concerns. He even comes to see me anytime I am in the ER. :slight_smile: Best of luck and as others have said - never be afraid to post any questions. All the best.

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Welcome!! I know how scary it can be at first…but there is HOPE! Read all that you can. Do not worry.
You will be referred to a hepatologist-try to find a good one! We also have a specialist who does the ERCP’s…I agree you want someone good to do that.
Everyone is different- but I believe your outlook makes a huge difference in how you percieve your disease.

Be hopeful! Read as much as you can about the disease and take each step day by day.

My one piece of advice financially is to look at your healthcare plan and deductible. You will most likely be having ercp’s frequently.

This disease has not controlled our lives. We have found happiness has continued on in our life. It HAS made us more thankful!!

Maris

Hi Marlena. My husband was diagnosed in June. , like you we never expected this and everything is still unknown. I spend a lot of time reading what everyone says here and at Inspire. He is at stage 4 cirrhosis. He has had a biopsy, ERCP, 2 mri’ so so much blood work. He is mostly fatigued and itchy. We watch his diet and lots of walking. I hope we can stay in contact. You will learn alot. Best of luck everyone cares

MarLena,
So sorry to hear your diagnosis of PSC. I’m sure you have many questions and may not know where to go to ask questions. Please know you found a great group of caring people at this site.
Mike

Thanks so much everyone! I was feeling depressed and very scared, but your encouragement has pulled me out of the funk I was in and I’m doing much better now emotionally. :blush: I appreciate all the advice and information you’ve all shared. It’s good to know I have this as a resource and I’m so glad I found this group!

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Marie-12, I’m so sorry to hear about your husband. Will he have a transplant? Do transplants have to be from an organ donor or can it be from a live donor with a partial transplant? I hope I don’t overwhelm you by asking, I’m sure you go through a lot as a caregiver and his spouse.

Hi. We don’t go again to the dr until December 8. We were told at the last
visit that they treat the complications as they happen. I have the same
questions for the care team as you do. It is a teaching hospital so we are
lucky to have the Dr’s we do.

MarLena
October 27

Marie-12, I’m so sorry to hear about your husband. Will he have a
transplant? Do transplants have to be from an organ donor or can it be from
a live donor with a partial transplant? I hope I don’t overwhelm you by
asking, I’m sure you go through a lot as a caregiver and his spouse.


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In Reply To
Marie-12
October 26
Hi Marlena. My husband was diagnosed in June. , like you we never
expected this and everything is still unknown. I spend a lot of time
reading what everyone says here and at Inspire. He is at stage 4 cirrhosis.
He has had a biopsy, ERCP, 2 mri’ so so much blood work. He is mostly
fatigued and itchy…

Hi Marlena,

Welcome to the world of PSC! As you can already see there is so much hope and good on this site. I was diagnosed in 2009 with PSC and had two stents put in in 2010. I did not have this site to refer to when I was diagnosed and my doctors didn’t give me much to go on. I researched a lot and really tried to find things that were helpful. I have been able to manage my symptoms with a lot of different natural things. There are many diet changes, supplements and essential oils that can be helpful. As always check with your doctor first, and yes as mentioned in other posts, everyone’s body is different. Just know that there is hope and options. Keep your head up.

Hi Marlena,
I’m sorry to hear of your diagnosis. Two things come to mind. I’m 49 and was diagnosed with PSC in 1998. It’s hard to be grateful at this moment, but I’d be grateful that you didn’t know that you had PSC all this time. The psychological impact of PSC has been very difficult for me all these years. It’s like living under a cloud. I’m so happy you have kids. I chose not to because I thought I’d die by the time they would be twelve. Instead, I’ve had a way better life than I thought I would. You can see in my other posts.

Have they opened up your common bile duct? I would ask about that. For me, it stopped all the pain. It’s worth mentioning to the doctor. They basically cut my common bile duct open in 1998, so any stones could fall through. It saved my life. Prior to that I had lost a lot of weight, but now I’m back to normal weight and play tennis etc.

Try to take things one day at a time. Hope for the best, it may actually happen.

Hi Lara. Thanks for the perspective, I am grateful.:blush:
I can’t imagine what you’ve went through with this looming for so long.
No, I haven’t had my common bile duct opened up other than the stent they put in. Someone suggested pain from the 2ERCP’s that were recent and only a month apart. I see the GI doc on Tuesday for my follow-up appointment to the last ERCP and hope to gain a lot more information and discuss the pain. I’ve been compiling a list for 2 weeks now, I hope he has enough time scheduled for me! LOL

MarLena, welcome to the club!

About the only good thing about psc is that is usually develops very slowly. Once diagnosed, it took quite a while for the diagnosis to sink in. So do your research that you have been doing, for knowledge is power.

PSC will test your flexibility, your stamina and your sense of humor. Think long term.

Be sure to keep in touch, ask questions, and research this website too.
Jeff

Thanks, Jeff. Love that … “Welcome to the club”! :joy:
I’m still reading and making my list for the doctor next week. I agree that knowledge is power and I am so happy I found such a valuable resource in this group!

Hi Mar lena. Just wanted to check in with you to see how you are doing?

Hi Marie! I’m doing well, thanks for asking! My visit with the GI was good. He did a colonoscopy on Tuesday and I don’t have UC or polyps, so that was great news. I see the surgeon on Monday to schedule gallbladder removal and he will biopsy my liver at that time and I’ll know what stage of PSC. My PSC is intrahepatic, not sure what that means in the long run? I’m feeling pretty good. I told him about the pain in the URQ which goes around my side and to the back. He said I shouldn’t be having pain, so after the gallbladder is removed if I still do he will reassess. I’m pretty sure it’s my gallbladder, so I’m hoping once it’s removed I’ll have a significant difference.
I feel like I have a lot of joint pain. I was walking 3 miles a day before I had my hospital stay in September. I’ve worked myself back up to 2 miles almost every day. I know I have arthritis in my knees, but my hips feel sore all the time. I take a multivitamin and osteo biflex each day, but don’t know if they’re really helping.
I’ve had 2 days of total fatigue where I just feel like I can’t function. The GI doc said I shouldn’t be fatigued and that if I read things like that I might be having it for that reason. Since it’s not everyday or all the time, I doubt it’s psychosomatic. My platelets have been high and my iron low for at least ten years, so I have felt tired on and off for that length of time anyway. This just seems a little more extreme.

Anyway, other than that I’m good emotionally and moving forward with whatever is thrown at me! :blush:

How are you doing? Any new news on your husband?

MarLena,
Just a question for you. Are you under the care of a hepatologist for your PSC? If not, I would really encourage you see one “first” before you proceed with your gallbladder removal unless you are in an emergency state that demands it come out now. Any abdominal surgery with liver disease can further decompensate the liver and cause big problems for you. You really need to consult with a hepatologist first. Most GI doctors are not specialists in the treatment of liver diseases especially PSC. You can find a hepatolgoist at any major hospital that does liver transplants. If you can’t get a referral from your doctor, do a self referral by walking in and making an appointment. Just a word of caution before you proceed. I wish you the very best though in whatever decision you make.

Mark
PSC 2011 / Liver Transplant 7-2015

2 Likes

I’ll second the recommendation to see a PSC specialist. Your GI’s statements are concerning as URQ pain and fatigue are very common PSC symptoms. I also question the need for a liver biopsy unless AIH overlap is suspect. Try to get a second opinion before removing any hardware.

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Do I want to see a hepatologist or a liver transplant specialist? Looking online, I see both listed at Emory. When I talked to the receptionist, I guess there’s not a doctor that specifically sees patients with PSC?
Thank you for the advice too. I really appreciate it!