New Transplant Blog Posts

Hello everyone,
We hope this finds everyone well today! We have started this discussion today to announce a new blog post. Every week, we will reply to this discussion to let you know when something new is published. Watch for new information often!

Have a productive and enjoyable week!
– Kristin

@contentandwell

@jeanne5009 With such a low MELD what symptoms do you have, and how was it caught so early? Maybe if you are lucky it will never get to the point where you do need a transplant. The mother of a woman I know had cirrhosis for 10 years and was fine with it.

You mention the shingles shot in a different post. The reason I am not supposed to get it has something to do with my immunosuppressants and of course you are not on them yet. I know that Mayo says it's OK to get post-transplant but MGH, my transplant center, is still being very cautious.
JK

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@jk volunteer mentor

Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!

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@jeanne5009

@jk volunteer mentor

Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!

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@jeanne5009, I am happy to see your response, because I had been wondering about how you are doing. I remember reading and sharing with you while you were struggling with so many bothersome symptoms like itching, nausea, fatigue. Have these things eased for you?

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Yes depending on the day or week…I still have itch, nausea, and the never ending fatigue. My life is much more limited. I was looking forward to the trip to Mayo but it took me 3 days to recover. Most of my days I struggle to get to PT for my shoulder and foot….The fall this summer changed everything even though unrelated to the liver. LOL…somehow the liver rules! Im making great progress with my PT and am looking forward to getting back to 99.9%.

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@jeanne5009

Yes depending on the day or week…I still have itch, nausea, and the never ending fatigue. My life is much more limited. I was looking forward to the trip to Mayo but it took me 3 days to recover. Most of my days I struggle to get to PT for my shoulder and foot….The fall this summer changed everything even though unrelated to the liver. LOL…somehow the liver rules! Im making great progress with my PT and am looking forward to getting back to 99.9%.

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@jeanne5009, The liver sure does rule. And I realize from my experience how tired I used to get with liver disease. You are doing the very best thing for yourself by accepting it (not easy to do) and by allowing yourself the recovery time.
I bet that you are encouraged by your progress with the PT. 99.9% is a fantastic goal and an amazing accomplishment for you since you are having fatigue, So, how often do you see your local docs, and how often do you go to Mayo? I can see that you are being closely monitored, and that is a good thing.
I have some questions for you, and please only answer if you are comfortable to do so. Are you on the transplant list yet? Have the doctors given you any thoughts on whether you will remain at a steady Stage 4 level, or do they think that you will eventually need a transplant?

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@jeanne5009

@jk volunteer mentor

Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!

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@jeanne5009 Thanks for your response. I was curious because the first symptom I had that really alerted my doctor that something was wrong was HE episodes. Prior to that I did have symptoms — low platelets, shaky hands, and more — but they didn't cause much concern. I presume the blood work tests that were troublesome were ALT and AST. Oddly, mine were never very high! My cirrhosis was also from NAFLD which of course progressed to NASH. I never had ascites until the very end before I had my transplant, but I did have edema. I never really had ascites either.
As you go through this journey please feel free to ask questions to any of us who have been there. It sounds as if your cause and mine were similar but once it becomes cirrhosis I think the differences disappear. I hope your HE stays mild. Mine was more serious but not nearly as serious as some people have it, and there are of course some people who never have it at all. It's a pretty scary thing to be so confused.
Through it I too learned a lot, I never really knew just how important the liver is. I sure know now.
JK

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Hello everyone,
Cholangiocarcinoma (CCA) is a diagnosis that can be scary for patients. This cancer in the bile ducts can occur without a lot of symptoms as warning and can have several different treatment options, one of which is liver transplant. Because this diagnosis is complex, we thought a blog post might be appropriate to help patients understand the types and treatment options of this liver disease. Check out the blog today, and let us know if you have information for your fellow transplant group members about your treatment and transplant for CCA.
https://mayocl.in/37nf16L

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Hello from the frozen tundra that is Minnesota today! I wish we had a warmer blog topic for you such as hot cocoa or fireplaces, but instead, today's topic is about education! Even before we started Mayo Clinic Connect for transplant patients, we have been working to educate transplant patients and caregivers through various efforts. In today's blog, you can review some of those educational resources and learn how to easily share that educational information with your friends, family and followers. Maybe you can read and learn with a cup of hot cocoa in your hand and a warmth in your heart!
Stay safe, friends!
-Kristin
https://mayocl.in/2YBtZCd

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@keggebraaten

Hello from the frozen tundra that is Minnesota today! I wish we had a warmer blog topic for you such as hot cocoa or fireplaces, but instead, today's topic is about education! Even before we started Mayo Clinic Connect for transplant patients, we have been working to educate transplant patients and caregivers through various efforts. In today's blog, you can review some of those educational resources and learn how to easily share that educational information with your friends, family and followers. Maybe you can read and learn with a cup of hot cocoa in your hand and a warmth in your heart!
Stay safe, friends!
-Kristin
https://mayocl.in/2YBtZCd

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@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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@cehunt57

@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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@keggebraaten I reported this as inappropriate.
Carol

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@cehunt57

@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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I reported this yesterday. I believe it's been taken care of already. It was very disturbing to see!

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@cehunt57

@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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Hi @cehunt57, thank you for posting about your concern. Several members reported the post and it was removed within minutes of it being posted. The member has been banned. You'll also notice that I edited your message to remove the quoted offending post.

Thank you everyone for reporting the post. The best way to report an inappropriate message, when you have concern about a member's safety or query the validity of a health claim, simply click Report at the bottom right of the message. That expedites a message to the moderating team. Together we keep the community safe.

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@cehunt57

@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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@cehunt57 I immediately went to it with the intention of reporting it but it had already been deleted. That was just very weird.
JK

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Thanks everybody for acting on this before I did. I saw it today 1/7/2020. I wonder how it made it through to my email notifications yesterday? 🤔

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@cehunt57

@keggebraaten I woke up to an alarming post by a new member as of yesterday. It was an email notification that came to me of a new post to this discussion. When I clicked view or reply it was not here. I tried to copy it and want to paste it here:

This is Bunk. It needs to be flagged and reported. This Dr Mark is implying that he is affiliated with Mayo and Mayo buys kidneys! Can you or someone else get rid of this guy and his posts before some desperate member falls for this?

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@cehunt57 You can report a post yourself, by clicking on the little flag on lower right of a post, and alerting the moderators of this forum. I also saw this post, albeit later in the day, and by the time i went to report it, it had already been removed.
Good job, everyone!
Ginger

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@colleenyoung

Hi @cehunt57, thank you for posting about your concern. Several members reported the post and it was removed within minutes of it being posted. The member has been banned. You'll also notice that I edited your message to remove the quoted offending post.

Thank you everyone for reporting the post. The best way to report an inappropriate message, when you have concern about a member's safety or query the validity of a health claim, simply click Report at the bottom right of the message. That expedites a message to the moderating team. Together we keep the community safe.

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I just want to say how much I appreciate the moderation on this site. My daughter has been on an infertility forum on Reddit and had issues with them not being very helpful. Based on my experience here, I was able to suggest the Mayo Connect forums and she found the tone and supportiveness to be much better. I know it's a lot of work to moderate all this activity and wanted to let you know it's appreciated.

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