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

@sandyblair, if you are comfortable to share, I have a couple of questions. Did you know that you had PSC before you needed a transplant?
and – I don’t know how long ago the living organ transplant program began, but you must have been a pretty early one – Am I right or wrong about that?
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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You asked me about my dreams after transplant and I never answered it. I love life. I have done a lot of traveling throughout the world. Love my job, but I am going to retire next year to enjoy golfing and riding that big Harley of mine.

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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, Wow! What an exciting future, and what fun awaits you!! (my brother and wife are Harley owners, so I can feel your excitement) My dream was to be able to go hiking again. I am happy to add that I am living my dream, too!

I look forward to hearing more from you as you move closer to the big day.
Rosemary

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Absolutely! I had a Liver Transplant on September 10 , 2001 . My son , 23 years old, gave me 60% of his Liver! He hasn’t had any health problems since then !
I have had a couple of Health issues , but God has blessed me 16 extra years and counting !
My surgery was at Mayo hospital Phoenix
And I assure you they are the best !

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@sandyblair

Absolutely! I had a Liver Transplant on September 10 , 2001 . My son , 23 years old, gave me 60% of his Liver! He hasn’t had any health problems since then !
I have had a couple of Health issues , but God has blessed me 16 extra years and counting !
My surgery was at Mayo hospital Phoenix
And I assure you they are the best !

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@sandyblair, You have an amazing story! But then, I think that all of us transplant recipients have amazing stories! I am of the opinion that by sharing our stories, that we are promoting organ donation. Thank you for sharing.
I enjoy hearing from you. And I look forward to hearing more from you.
Rosemary

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Where do I go to read sandyblair’s transplany story as I have PSC ? I have my appointment next Monday at Mayo Clinic, Rochester

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@sandyblair

Absolutely! I had a Liver Transplant on September 10 , 2001 . My son , 23 years old, gave me 60% of his Liver! He hasn’t had any health problems since then !
I have had a couple of Health issues , but God has blessed me 16 extra years and counting !
My surgery was at Mayo hospital Phoenix
And I assure you they are the best !

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Next week, I go to Mayo Clinic in Rochester for a second evaluation for a partial Liver transplant. Like you I have PSC. I have it since 1990. Over the years, I have detoriated and was told I need a partial Liver transplant.

I have a Donor. I’m just a little concerned about the surgery. Where you glad you had it done ? How sick were you after the transplant.

Any words of wisdom ?

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@jacinta

Where do I go to read sandyblair’s transplany story as I have PSC ? I have my appointment next Monday at Mayo Clinic, Rochester

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@jacinta, If you are referring to my reference to @sandyblair story, I’m my earlier reply, I am speaking of the information that she has shared on this PSC forum. You can scroll up to the beginning of this discussion and look for her entries. Or you can click on @sandyblair and read what she has shared with us.

Jacinta, you can direct your questions to anyone by clicking on the @name, as I have done above to alert @sandyblair that you have mentioned her.

It is good to hear from you. I hope that your visit goes well next week.
Rosemary

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@sandyblair

Absolutely! I had a Liver Transplant on September 10 , 2001 . My son , 23 years old, gave me 60% of his Liver! He hasn’t had any health problems since then !
I have had a couple of Health issues , but God has blessed me 16 extra years and counting !
My surgery was at Mayo hospital Phoenix
And I assure you they are the best !

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@sandyblair, I believe that the above post by @jacinta is meant for you.

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@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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You make me feel good about going to Mayo and accepting that I may need the surgery. Plus you had it done 2001, which means that surgeries have come along way since then. . . Meaning even more success.

Thank You

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

@jacinta, I hope that you will find the answers that you are looking for when you visit Mayo. If you take your questions, they will be able to give you answers. I am also happy that our members have been able to help you to feel better about your surgery.
I continue to learn and to be amazed by the inspiring stories shared by out members. I hope to hear more from you.
Sending you a hug and prayers for your journey,
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

Thank You so much. Im on the bus to Rochester from the Airport

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

@jacinta, Stay warm:-)
If you get the opportunity, You might want to check out the Gift of Life House – for transplant patients.
Rosemary

REPLY

@jacinta, I want to send you this note to say that I’m thinking about you. I sincerely hope that you are feeling okay.

I want to share with you a conversation that is currently active among some members who are in the process of being tested to be living kidney donors. Even though you are a liver patient, I feel that you might enjoy reading or participating in this group – different organ + similar concerns.
If you click on this link, it will take you to the discussion, “Living Donor”. https://connect.mayoclinic.org/discussion/living-donor/

Let me know if you need help getting to it.
Rosemary

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If you have Primary Sclerosing Cholangitis (PSC), or if you are a family member or friend of someone with PSC, then you must have lots of questions about the disease. I know I did when I was diagnosed with it in early 2000's, and I still do have lots of questions. I am a transplant recipient, and I remain dedicated to sharing my own experience to walk with you, to talk with you, and to hold your hand through your journey. But there is more that I have to share with you –

Mayo Connect has created a new Page that is dedicated to Primary Sclerosing Cholangitis (PSC). You can follow the PSC page and stay up-to-date with news about advances in PSC research, clinical trials, and available resources.
https://connect.mayoclinic.org/page/psc/
What is your PSC experience?

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