Primary Sclerosing Cholangitis (PSC)

Posted by jacinta @jacinta, Aug 21, 2017

I’m told I need to have a partial liver transplant. I do have a Donor. My question is: should I get a second opinion ? I have an appointment with Mayo Clinic. I heard that they are the best.

I’d love to hear from people that had the partial liver transplant. Are you glad that you had it done? And are you getting a better quality of life.

Jacinta

Hi, Jacinta. In case you didn't know, there is a great resource via PSC Partners. Not only is there good info. on our website (pscpartner.org), but we also have PSC discussion groups on Facebook. That would be a great place to get additional opinions. @jacinta

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@jenchavez

Hi, Jacinta. In case you didn't know, there is a great resource via PSC Partners. Not only is there good info. on our website (pscpartner.org), but we also have PSC discussion groups on Facebook. That would be a great place to get additional opinions. @jacinta

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I tried logging on and had difficult in getting into it. I’d love to know more as I have it since 1989 . . . with bad days, good days . . . many, many ERCPs

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@jacinta

I tried logging on and had difficult in getting into it. I’d love to know more as I have it since 1989 . . . with bad days, good days . . . many, many ERCPs

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Welcome back, @jacinta
Here is the link to the PSC blog by Mayo Clinic experts https://connect.mayoclinic.org/page/psc/
The blog is right here on Connect, so you don't need to login again.

We would love to get an update from you. You mentioned that you had a donor. Is a partial transplant still in your future?

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Sorry. I forgot the "s" http://www.PSCPartners.org

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@jenchavez

Hi, jenchavez. I would like to welcome you to Mayo Connect. My own PSC history is what brought me to Connect. After my transplant in 2009, I was looking others who shared my own transplant experience. That is when I discovered Mayo Connect. I enjoy being able to learn from others and to share transplant experiences that we have in common. I am in awe over the amount of caring and support transplant patients offer to each other. I appreciate what you have shared about the PSC Partners. We PSC'ers know what a lonely disease we share.
I am also excited to share the new PSC Pages that the Mayo Experts have recently opened. Have you seen it yet? https://connect.mayoclinic.org/page/psc/

jenchavez, In addition to your group affiliation with the PSC Partners, would you share a little about your own personal connection with PSC? Are you a patient? Cargiver? Family member?…

I look forward to hearing more from you.

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My daughter has just been diagnosed with this illness. It is also known as PSC. A couple of years ago her liver enzymes became erratic. This past fall, the readings were too eratic and her BP suggested she go to a gastroenterologist. She has had every test imaginable and her liver biopsy confirms this diagnosis. Of course I am heartbroken. She and I have read everything we can find on this. Now it is a reality and I feel frozen. I do not know what I can do. I want to load her into a plane and go to the Mayo Clinic. At this point, I do not think they would even deal with her. Can anyone give me some insight on this diagnosis and/or their experience with Mayo and when they should be contacted. Immunology has become a treatment for cancer, has it been tested on this disease? She also has Crohn’s disease.

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@sandyjr

My daughter has just been diagnosed with this illness. It is also known as PSC. A couple of years ago her liver enzymes became erratic. This past fall, the readings were too eratic and her BP suggested she go to a gastroenterologist. She has had every test imaginable and her liver biopsy confirms this diagnosis. Of course I am heartbroken. She and I have read everything we can find on this. Now it is a reality and I feel frozen. I do not know what I can do. I want to load her into a plane and go to the Mayo Clinic. At this point, I do not think they would even deal with her. Can anyone give me some insight on this diagnosis and/or their experience with Mayo and when they should be contacted. Immunology has become a treatment for cancer, has it been tested on this disease? She also has Crohn’s disease.

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Hi @sandyjr, I moved your message to the Primary Sclerosing Cholangitis (PSC) discussion in the Digestive Health group so that you can meet other members talking about PSC, like @rosemarya @jacinta @monty49 @sandyblair and @jenchavez. Many have been treated for PSC at Mayo Clinic.

You might wish to also follow the PSC Page by Mayo Expert on Connect, including clinical trials and treatment advancements: https://connect.mayoclinic.org/page/psc/

You can call Mayo Clinic any time to inquire about seeking a second opinion and treatment options. No obligation. Sandy your daughter can self refer to Mayo or get her specialist to refer her. You'll find the contact information here: http://mayocl.in/1mtmR63

It is such a shock to receive a diagnosis like PSC. We're here to offer a virtual hand, answer question where we can and direct to resources that might help. Sandy, may I ask how old your daughter is? Does she live close to you?

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Thank you for your quick reply. I am in shock even though I think I knew this was coming. I am new to this website so do not know how to navigate it well. My daughter turned 43 yesterday…I am so glad she had a great/and happy birthday. This is probably too much information, but her husband is psychologically abusive and everyone wants her to leave him, but I think she is afraid as well as he holds the health insurance. She is in a very bad place with a lot of stress. I do not know if the health insurance would cover her out of state. I do not think her disease has progressed too far and that is why I would like for her to be able to get information/opinions from Mayo. The liver biopsy was done at our local hospital and a second opinion was received from Mount Sinai Hospital, so I think the diagnosis is accurate. She lives only about 5 miles from me and this year has been hard for both of us. I was diagnosed with breast cancer for the second time in April and she started her journey about that same time….just blood work then. The first specialist she went to could not seem to get approval for the tests that she needed and she ended up in the ER with a Crohn’s attack and the doctor that took care of her is excellent. He has ordered and gotten approval for every test possible as far as I know. She and I support each other…she took me for my surgery and to my Dr appointments. No wonder her Crohn’s flared up. Of course I would do anything for her. We live in NJ and none of the Mayo sights are remotely close. I did read that they have places that work with them and maybe act as intermediaries, but I cannot find any information. Please forward me info and websites so that I can at least feel like I am helping. Thanks Colleen. I am on your website, only in the breast cancer part.

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@sandyjr

My daughter has just been diagnosed with this illness. It is also known as PSC. A couple of years ago her liver enzymes became erratic. This past fall, the readings were too eratic and her BP suggested she go to a gastroenterologist. She has had every test imaginable and her liver biopsy confirms this diagnosis. Of course I am heartbroken. She and I have read everything we can find on this. Now it is a reality and I feel frozen. I do not know what I can do. I want to load her into a plane and go to the Mayo Clinic. At this point, I do not think they would even deal with her. Can anyone give me some insight on this diagnosis and/or their experience with Mayo and when they should be contacted. Immunology has become a treatment for cancer, has it been tested on this disease? She also has Crohn’s disease.

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Hi, sandyjr. I would like to reach out across the miles and offer my hand, my ears, and my willingness to walk with you and your daughter.

I know exactly how you feel right now. I was diagnosed with PSC in early 2000's, and i also had the elevated liver enzymes, the endless tests, and procedures to determine my diagnosis. I know your heartbreak and your fear.
For right now, your daughter is doing the right thing by being under the care of a gastroenterologist (GI). He/she will be the one to keep watch on her condition as he initiates routine check-ups. Mine were scheduled with labs and visits every 4 months. When my PSC began to develop to cirrhosis, he referred me to the transplant center in my home state. By knowing that she has this disease, she can begin now to take action to practice healthy living. Healthy eating, physical activity, avoiding any alcohol, asking GI about over the counter medications are some that come immediately to mind. By being proactive in her health care she will be best prepared for whatever lies ahead.
Crohns Disease is common with PSC.
The PSC Page that Colleen shared will give you a view of the depth of research that is happening.

How is your daughter dealing with this diagnosis? How does she feel healthwise?

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@sandyjr

Thank you for your quick reply. I am in shock even though I think I knew this was coming. I am new to this website so do not know how to navigate it well. My daughter turned 43 yesterday…I am so glad she had a great/and happy birthday. This is probably too much information, but her husband is psychologically abusive and everyone wants her to leave him, but I think she is afraid as well as he holds the health insurance. She is in a very bad place with a lot of stress. I do not know if the health insurance would cover her out of state. I do not think her disease has progressed too far and that is why I would like for her to be able to get information/opinions from Mayo. The liver biopsy was done at our local hospital and a second opinion was received from Mount Sinai Hospital, so I think the diagnosis is accurate. She lives only about 5 miles from me and this year has been hard for both of us. I was diagnosed with breast cancer for the second time in April and she started her journey about that same time….just blood work then. The first specialist she went to could not seem to get approval for the tests that she needed and she ended up in the ER with a Crohn’s attack and the doctor that took care of her is excellent. He has ordered and gotten approval for every test possible as far as I know. She and I support each other…she took me for my surgery and to my Dr appointments. No wonder her Crohn’s flared up. Of course I would do anything for her. We live in NJ and none of the Mayo sights are remotely close. I did read that they have places that work with them and maybe act as intermediaries, but I cannot find any information. Please forward me info and websites so that I can at least feel like I am helping. Thanks Colleen. I am on your website, only in the breast cancer part.

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Sandy. I was treated locally in my state of Kentucky. And I received excellent care here, and after 8 years, I had to be listed for for a transplant here. When some some complications developed, my local transplant team arranged for me to be seen at Mayo, where I transplanted in 2009.
It sounds to me like your daughter has a supportive doctor who will answer her questions about this.

How does that sound to you?

@stella25, with your PSC experience, do you have any ideas to help Sandy deal with her daughter's new PSC diagnosis?

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@sandyjr

Thank you for your quick reply. I am in shock even though I think I knew this was coming. I am new to this website so do not know how to navigate it well. My daughter turned 43 yesterday…I am so glad she had a great/and happy birthday. This is probably too much information, but her husband is psychologically abusive and everyone wants her to leave him, but I think she is afraid as well as he holds the health insurance. She is in a very bad place with a lot of stress. I do not know if the health insurance would cover her out of state. I do not think her disease has progressed too far and that is why I would like for her to be able to get information/opinions from Mayo. The liver biopsy was done at our local hospital and a second opinion was received from Mount Sinai Hospital, so I think the diagnosis is accurate. She lives only about 5 miles from me and this year has been hard for both of us. I was diagnosed with breast cancer for the second time in April and she started her journey about that same time….just blood work then. The first specialist she went to could not seem to get approval for the tests that she needed and she ended up in the ER with a Crohn’s attack and the doctor that took care of her is excellent. He has ordered and gotten approval for every test possible as far as I know. She and I support each other…she took me for my surgery and to my Dr appointments. No wonder her Crohn’s flared up. Of course I would do anything for her. We live in NJ and none of the Mayo sights are remotely close. I did read that they have places that work with them and maybe act as intermediaries, but I cannot find any information. Please forward me info and websites so that I can at least feel like I am helping. Thanks Colleen. I am on your website, only in the breast cancer part.

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Sandy, when you say that Mayo has "places that work with them and maybe act as intermediaries", I believe you are referring to the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network

Excerpt from the website
"Mayo Clinic is deeply committed to caring for all those who need hope and healing, but we recognize that not everyone wants or needs to travel to Mayo Clinic for care. Today, innovations in the delivery of care can ensure that people have access to Mayo Clinic medical expertise no matter where they live.
The Mayo Clinic Care Network uses technology and physician collaboration to deliver a full spectrum of medical expertise to communities across the country and throughout the world. Through the network, Mayo Clinic collaborates with local providers, complementing local expertise and providing additional peace of mind."

It doesn't look like there is an official Care Network partner in NJ. But as Rosemary says, many patients of Mayo Clinic return home and Mayo experts coordinate care with local providers. If you call Mayo, they can answer these questions more knowledgeably, including information about out of state insurance etc.

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@rosemarya

Hi, jenchavez. I would like to welcome you to Mayo Connect. My own PSC history is what brought me to Connect. After my transplant in 2009, I was looking others who shared my own transplant experience. That is when I discovered Mayo Connect. I enjoy being able to learn from others and to share transplant experiences that we have in common. I am in awe over the amount of caring and support transplant patients offer to each other. I appreciate what you have shared about the PSC Partners. We PSC'ers know what a lonely disease we share.
I am also excited to share the new PSC Pages that the Mayo Experts have recently opened. Have you seen it yet? https://connect.mayoclinic.org/page/psc/

jenchavez, In addition to your group affiliation with the PSC Partners, would you share a little about your own personal connection with PSC? Are you a patient? Cargiver? Family member?…

I look forward to hearing more from you.

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Hi, @rosemarya. I'm sorry I didn't see this message until now. I am the communications director at PSC Partners. I am new to the organization and still learning about the disease, but I am thrilled to be a small part of moving the organization forward as we support the PSC community and search for a cure.

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@rosemarya

Hi, jenchavez. I would like to welcome you to Mayo Connect. My own PSC history is what brought me to Connect. After my transplant in 2009, I was looking others who shared my own transplant experience. That is when I discovered Mayo Connect. I enjoy being able to learn from others and to share transplant experiences that we have in common. I am in awe over the amount of caring and support transplant patients offer to each other. I appreciate what you have shared about the PSC Partners. We PSC'ers know what a lonely disease we share.
I am also excited to share the new PSC Pages that the Mayo Experts have recently opened. Have you seen it yet? https://connect.mayoclinic.org/page/psc/

jenchavez, In addition to your group affiliation with the PSC Partners, would you share a little about your own personal connection with PSC? Are you a patient? Cargiver? Family member?…

I look forward to hearing more from you.

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@rosemarya I am wondering if this is a good platform for me to highlight some important news from PSC Partners. For example, PSC now has its own ICD-10 code. We are working to get the word out. Would that type of information fit on this platform?

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@jenchavez

@rosemarya I am wondering if this is a good platform for me to highlight some important news from PSC Partners. For example, PSC now has its own ICD-10 code. We are working to get the word out. Would that type of information fit on this platform?

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@jenchavez
You have responded to the Mayo Clinic Connect Group Discussion forum. This is a place where we share our experiences and support each other and fellow patients. Would you tell us a little about your connection with PSC? Are you a PSC patient? .

I am now preparing to honor 10 years of renewed health and life as an organ recipient. I wish I had know of such a group when I was experiencing my own liver failure with PSC. How did you become involved with PSC Partners?

Here is a newsfeed page about PSC Partners – I think that is the best place to post the news.
Q & A: Ricky Safer, CEO of PSC Partners Seeking a Cure
https://connect.mayoclinic.org/page/psc/newsfeed/q-a-ricky-safer-ceo-of-psc-partners-seeking-a-cure/

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@rosemarya

Hi, sandyjr. I would like to reach out across the miles and offer my hand, my ears, and my willingness to walk with you and your daughter.

I know exactly how you feel right now. I was diagnosed with PSC in early 2000's, and i also had the elevated liver enzymes, the endless tests, and procedures to determine my diagnosis. I know your heartbreak and your fear.
For right now, your daughter is doing the right thing by being under the care of a gastroenterologist (GI). He/she will be the one to keep watch on her condition as he initiates routine check-ups. Mine were scheduled with labs and visits every 4 months. When my PSC began to develop to cirrhosis, he referred me to the transplant center in my home state. By knowing that she has this disease, she can begin now to take action to practice healthy living. Healthy eating, physical activity, avoiding any alcohol, asking GI about over the counter medications are some that come immediately to mind. By being proactive in her health care she will be best prepared for whatever lies ahead.
Crohns Disease is common with PSC.
The PSC Page that Colleen shared will give you a view of the depth of research that is happening.

How is your daughter dealing with this diagnosis? How does she feel healthwise?

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My daughter is having difficulty dealing with this life setback. Her personal life is a mess. Her husband is abusive and she would like to leave him but he holds the health insurance, so she is trapped in that relationship. She was a stay at home mom and has not worked outside of the home much. Her husband had his own business which she did all the office work for, but never collected an income, so did not pay into SS. Now we have to think about how she is going to finance her illness, especially when she gets to the point of needing a transplant. She may not qualify for Medicare and I do not think you can get the best of the best on Medicaid. Can anyone suggest ways of getting financial assistanace. She works part time now, but she is ill and with the days of not feeling well and with the time used for medical tests etc, I doubt if any place would hire her full time. So, not only are we dealing with the illness, we have these other issues. I read somewhere that it is suggested that you clip coupons and rely on family help. Get real….how many coupons can you clip when you cannot afford to buy anything. Can anyone tell me any of their own difficult financial situations and how they overcame them?

Also, except for her liver enzymes being erratic, and not all of them, different ones at different times, the only test that diagnosis PSC is the liver biopsy. She has had CT scans, HIDA scan, MRI, ECRP and just went for a CT to see how much damage was done to her in testing with this last Crohn’s attack. Her doctor has mentioned surgery if enough damage was done. This is awful. Has anyone else been diagnose with just the liver biopsy being the deciding factor?

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