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

@jacinta

26 Sept for 4 Days. They told me I wouldn’t leave their hospital until I was absolutely sure of their plans

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@jacinta, I’m sending my thoughts and my prayers. I hope that your visit and appointments go well for you this week. You are in good hands at Mayo.
Hugs,
Rosemary – remember that we are here and we will be happy to walk with you and help you by sharing our experiences.

REPLY
@rosemarya

@jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately, because PSC is the reason for my transplant in 2009 at Mayo, Rochester. My donor was an anonymous deceased donor.

I would like to share the following link with you. You can access the living donor and living recipient toolkits that contain the Mayo Clinic information for living donation.
https://connect.mayoclinic.org/page/transplant/
I want to let you know that I am happy that you have an appointment at Mayo. Mayo Clinic is the expert for PSC – Primary Sclerosing Cholangitis. My local transplant team sent me to Mayo in Rochester when complications developed that they could not diagnose locally.

I can honestly say that you will have ample opportunity to discuss the living transplant issue with them.

Are you currently on the transplant list? When is your appointment?

I look forward to reading what others, who have had living donation have to say.
Rosemary

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Your response makes me feel great. I have my appointment rescheduled for 30 October. I do have a Donor ready to go

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@rosemarya

@jacinta, I remember when I heard of my diagnosis of PSC, I thought that my world was falling apart. I had never even heard of it. And since I felt ‘normal’ I was completely confused, as well as frightened.

How long have you had this diagnosis? How are you feeling?

Please let me know if I can be of any assistance with PSC questions.
Rosemary

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I have it since 1989. I’ve been very sick over the years.

I rescheduled my appointment for 30 October

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@jacinta

26 Sept for 4 Days. They told me I wouldn’t leave their hospital until I was absolutely sure of their plans

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Yes, they do a MELD score and I didn’t qualify for a full Liver Transplant. I was advised to go for the partial liver transplant. I have a Donor ready to go.

I just needed a second opinion and that’s why I contacted and set up an appointment with Mayo Clinic

REPLY
@rosemarya

@jacinta, Here is a link to a featured patient with PSC and living donor. You can find her full story there. Very inspiring!
https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/
Rosemary

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Clinic at Rochester

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@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

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Welcome to Connect, @monty49. We would love to hear more about your transplant story. Perhaps you could share it on this discussion thread:

– At home with my new liver transplant https://connect.mayoclinic.org/discussion/at-home-with-my-new-liver-transplant/

REPLY
@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

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@monty49, Hi Julianne. I extend a delayed Welcome to Mayo Connect. I am thrilled to see that you have joined this conversation about PSC. Congratulations on your transplant!

I, too received my transplant at Mayo, Rochester (2009) I was sent to Mayo from Kentucky because of the complications that developed with my PSC. They are the #1 experts for PSC.

When I was first diagnosed with PSC, I was frightened, and alone. I would have welcomed the opportunity to chat with people like yourself. So, I invite you to look thru our discussion threads, and share any information that you are comfortable to share.

Julianne, we have recently experienced an increase in activity relating to PSC. Would you mind sharing the link to the PSC Partners group?

How has your life changed since your transplant?
Rosemary

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@rosemarya

@jacinta, I remember when I heard of my diagnosis of PSC, I thought that my world was falling apart. I had never even heard of it. And since I felt ‘normal’ I was completely confused, as well as frightened.

How long have you had this diagnosis? How are you feeling?

Please let me know if I can be of any assistance with PSC questions.
Rosemary

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@jacinta, I am sorry for you to be feeling sick. But, unfortunately that is the course of the PSC journey. I hope that the time until your appointment passes easily for you.

When I was waiting for my transplant, I used to ‘dream’ about my life after the transplant – what I wanted to do, where I wanted to go, etc.

Jacinta, What are some of your ‘dreams’ your life after the transplant?

Hugs,
Rosemary

REPLY
@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

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I was diagnosed with PSC also ! Diagnose in 1993 ! Liver transplant 2001 , Live donor , my23 year old son !
It has been an amazing journey , a couple of valleys but have done so well for most of it ! God has truly blessed me !

REPLY
@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

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@sandyblair, Good Morning! I feel like I’m answering the phone – your message popped up just now. I am smiling, and feel such peace and happiness right now because of your reply. Thank youI

What are a few of the blessings that you have experienced as a result of your son’s loving living liver donation?

I look forward to hearing from you.
Rosemary

REPLY
@rosemarya

@jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately, because PSC is the reason for my transplant in 2009 at Mayo, Rochester. My donor was an anonymous deceased donor.

I would like to share the following link with you. You can access the living donor and living recipient toolkits that contain the Mayo Clinic information for living donation.
https://connect.mayoclinic.org/page/transplant/
I want to let you know that I am happy that you have an appointment at Mayo. Mayo Clinic is the expert for PSC – Primary Sclerosing Cholangitis. My local transplant team sent me to Mayo in Rochester when complications developed that they could not diagnose locally.

I can honestly say that you will have ample opportunity to discuss the living transplant issue with them.

Are you currently on the transplant list? When is your appointment?

I look forward to reading what others, who have had living donation have to say.
Rosemary

Jump to this post

Before I retired from work , I would take a basket of candy and give it out and tell new people my story! And I always called my son , my donor and thanked him for my life ! A lot of times I give him a gift !
Since retirement, I talk to a coordinator and ask them to thank everyone at the Mayo Phoenix! Still call my son !

REPLY
@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

Jump to this post

I had 3 grandkids when I had my transplant in 2001 ! I now have 10 grandchildren and have watched them grow ! The oldest is 17 and a senior in high school ! The youngest are 3 year olds , 2 of them , separate parents !
I have traveled with sisters on trips we call sisters reunions !
I have worked til I retired in 2014 at Walmart amidst being exposed to possible germs ! I have truly been blessed !

REPLY
@rosemarya

@jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately, because PSC is the reason for my transplant in 2009 at Mayo, Rochester. My donor was an anonymous deceased donor.

I would like to share the following link with you. You can access the living donor and living recipient toolkits that contain the Mayo Clinic information for living donation.
https://connect.mayoclinic.org/page/transplant/
I want to let you know that I am happy that you have an appointment at Mayo. Mayo Clinic is the expert for PSC – Primary Sclerosing Cholangitis. My local transplant team sent me to Mayo in Rochester when complications developed that they could not diagnose locally.

I can honestly say that you will have ample opportunity to discuss the living transplant issue with them.

Are you currently on the transplant list? When is your appointment?

I look forward to reading what others, who have had living donation have to say.
Rosemary

Jump to this post

@sandyblair, That is a wonderful act of kindness that you are doing by sharing your blessing with others. I am sure that they enjoy the candy! And I know that your story is amazing – and will encourage other people to think about Living Donation.

I wish that I had known you back in 2001. I did not know anyone with PSC, and I did not know anyone with an organ donation. You would have been able to help me understand what I was going thru. But, I am happy to meet you now, and I getting to know you.

@sandyblair, I want to share a helpful hint with you in case you want to direct your reply to a particular person. Just highlight their @name, then do a copy then past in the reply box. It took me a little practice before I could do it because my hands still get shaky from my meds.

Do you get shaky or have the trembles after taking your transplant medications?

Rosemary

REPLY
@rosemarya

@jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately, because PSC is the reason for my transplant in 2009 at Mayo, Rochester. My donor was an anonymous deceased donor.

I would like to share the following link with you. You can access the living donor and living recipient toolkits that contain the Mayo Clinic information for living donation.
https://connect.mayoclinic.org/page/transplant/
I want to let you know that I am happy that you have an appointment at Mayo. Mayo Clinic is the expert for PSC – Primary Sclerosing Cholangitis. My local transplant team sent me to Mayo in Rochester when complications developed that they could not diagnose locally.

I can honestly say that you will have ample opportunity to discuss the living transplant issue with them.

Are you currently on the transplant list? When is your appointment?

I look forward to reading what others, who have had living donation have to say.
Rosemary

Jump to this post

@rosemarya
It is a blessing to get to share my story ! I have been on Prograf since 2001 and have never had any side affects ! What do you take ?

REPLY
@monty49

Hi Jacinta,

I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.

I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.

My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.

I wish you the best and please continue to ask questions.

Julianne (in Minnesota)

Jump to this post

@sandyblair, You are amazing! So many beautiful grandchildren to enjoy. I have 1 granddaughter who will be 5 in December. My son, her dad/mom got married 4 months after my transplant in 2009. One of my blessings was to get to be at the wedding.

I, too enjoy travel now that I am well and we have retired. We like to hike, and we plan our visits to the National Parks. Where do you and your sisters like to go for your sisters reunions?
Rosemary

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