@julie3258, I have experience with liver disease and liver transplant. I am happy that I have been tagged to meet you, and I am available to share any information from my own experience. I successfully transplanted 10 years ago, and my doctors always told me that there are some commonalities with all liver diseases, so even though I didn't have either AIH or fatty liver disease, I am here.
How can I help you?
Hi my sister has the same liver problem since 5 years but her doctor says till now she doesn’t need transplanting
Tell me please what was your liver status? when you did the transplanting
Thanks
Hi my sister has the same liver problem since 5 years but her doctor says till now she doesn’t need transplanting
Tell me please what was your liver status? when you did the transplanting
Thanks
@mahdi123, I was diagnosed with liver disease nearly 8 years (2002?)before my gastroenterologist sent me to the transplant department for transplant evaluation. During those years, he monitored my condition thru routine (4 month) labs and office appointments.
My liver function numbers were stable for the most part, then a slow steady rise in liver function labs began at the same time as bothersome symptoms -itching, nausea, more fatigue.
In September 2008, I had my 1st appointment with transplant dept. They examined me and did some scans and labs. The transplant doctor said I would be eligible for a liver transplant because my MELD score of 15 was the minimum to be listed for a liver at that particular time. My evaluation tests were in November, and I was added to the transplant list. Then (in my case) I declined steadily. I transplanted in April 2009. Not everyone follows the same path. I think that my fast decline surprised my doctors.
What has your sister's doctor said about when/if she will need transplant? How is she feeling?
@mahdi123, I was diagnosed with liver disease nearly 8 years (2002?)before my gastroenterologist sent me to the transplant department for transplant evaluation. During those years, he monitored my condition thru routine (4 month) labs and office appointments.
My liver function numbers were stable for the most part, then a slow steady rise in liver function labs began at the same time as bothersome symptoms -itching, nausea, more fatigue.
In September 2008, I had my 1st appointment with transplant dept. They examined me and did some scans and labs. The transplant doctor said I would be eligible for a liver transplant because my MELD score of 15 was the minimum to be listed for a liver at that particular time. My evaluation tests were in November, and I was added to the transplant list. Then (in my case) I declined steadily. I transplanted in April 2009. Not everyone follows the same path. I think that my fast decline surprised my doctors.
What has your sister's doctor said about when/if she will need transplant? How is she feeling?
The doctor of my sister says symbtoms should come up like stomach size and other cannot remember
Now she feels fattiuq and pain in west and legs started three days ago
Rosemary, Volunteer Mentor | @rosemarya | May 6, 2019
@mahdi123, I know that you must be frightened and confused. I am sorry that your sister has liver disease and the symptoms. Like her, I am a patient and I do not know the answer to when the doctor will determine when to send her for transplant testing. The symptoms that your doctor are all listed in this link that I want to share with you. I hope that you find it helpful as your sister wait for the next step. It can be a long slow process, so reading and learning will be to your advantage as you and the doctor take care of your sister. https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Is her doctor doing routine labs? That is how my doctor knew when to send me to the transplant center.
When is her next appointment? It is okay to call the doctor in between appointments when you have any concern.
Do you live near your sister?
@mahdi123, I know that you must be frightened and confused. I am sorry that your sister has liver disease and the symptoms. Like her, I am a patient and I do not know the answer to when the doctor will determine when to send her for transplant testing. The symptoms that your doctor are all listed in this link that I want to share with you. I hope that you find it helpful as your sister wait for the next step. It can be a long slow process, so reading and learning will be to your advantage as you and the doctor take care of your sister. https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Is her doctor doing routine labs? That is how my doctor knew when to send me to the transplant center.
When is her next appointment? It is okay to call the doctor in between appointments when you have any concern.
Do you live near your sister?
@mahdi123, That is how often my labs were drawn.
In the US, MELD score is used as an indicator for when to evaluate a patient for posible liver transplantation. MELD is an acronym for model for end-stage liver disease, and MELD score is the score provided to patients based on how urgently they need a liver transplant in the next three months. It’s used by hospitals and the government to prioritize allocation of deceased donor livers for transplant. The MELD score can range from 6 (less ill) to 40 (gravely ill). The same MELD score definition and calculation are used by all transplant centers in the U.S. - https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
Here is a discussion where other members are talking about their 'wait' until they can be referred for a liver transplant. There are many different experiences and things being shared. I tthink that is you read thru the responses you will see that everyone is on a different timeline.
You and your sister are not alone. @mahdi123, I invite you to read and to participate with questions to anyone:
It's not all about the MELD Score - https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
Has your sister's doctor talked to you about whether there is a score to measure when your sister will be referred for transplant?
Hi, Mahdi. Welcome to Connect. Mayo Clinic Connect is an online community where you can share your experiences and find support from people like you. I would like to help you. Would you share what brought you to Connect? What question do you have about Primary Biliary Cholangitis or Autoimmune Hepatitis.
Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.
Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.
Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.
I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.
I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.
My MELD score is only 9, or was 9 the last time I checked.
How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.
Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.
Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.
Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.
I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.
I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.
My MELD score is only 9, or was 9 the last time I checked.
How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.
@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.
"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.
Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/
Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?
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Hi my sister has the same liver problem since 5 years but her doctor says till now she doesn’t need transplanting
Tell me please what was your liver status? when you did the transplanting
Thanks
@mahdi123, I was diagnosed with liver disease nearly 8 years (2002?)before my gastroenterologist sent me to the transplant department for transplant evaluation. During those years, he monitored my condition thru routine (4 month) labs and office appointments.
My liver function numbers were stable for the most part, then a slow steady rise in liver function labs began at the same time as bothersome symptoms -itching, nausea, more fatigue.
In September 2008, I had my 1st appointment with transplant dept. They examined me and did some scans and labs. The transplant doctor said I would be eligible for a liver transplant because my MELD score of 15 was the minimum to be listed for a liver at that particular time. My evaluation tests were in November, and I was added to the transplant list. Then (in my case) I declined steadily. I transplanted in April 2009. Not everyone follows the same path. I think that my fast decline surprised my doctors.
What has your sister's doctor said about when/if she will need transplant? How is she feeling?
-
Like -
Helpful -
Hug
1 ReactionThe doctor of my sister says symbtoms should come up like stomach size and other cannot remember
Now she feels fattiuq and pain in west and legs started three days ago
@mahdi123, I know that you must be frightened and confused. I am sorry that your sister has liver disease and the symptoms. Like her, I am a patient and I do not know the answer to when the doctor will determine when to send her for transplant testing. The symptoms that your doctor are all listed in this link that I want to share with you. I hope that you find it helpful as your sister wait for the next step. It can be a long slow process, so reading and learning will be to your advantage as you and the doctor take care of your sister.
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Is her doctor doing routine labs? That is how my doctor knew when to send me to the transplant center.
When is her next appointment? It is okay to call the doctor in between appointments when you have any concern.
Do you live near your sister?
-
Like -
Helpful -
Hug
3 ReactionsYes her doctor does lab tests every 4 months
@mahdi123, That is how often my labs were drawn.
In the US, MELD score is used as an indicator for when to evaluate a patient for posible liver transplantation. MELD is an acronym for model for end-stage liver disease, and MELD score is the score provided to patients based on how urgently they need a liver transplant in the next three months. It’s used by hospitals and the government to prioritize allocation of deceased donor livers for transplant. The MELD score can range from 6 (less ill) to 40 (gravely ill). The same MELD score definition and calculation are used by all transplant centers in the U.S. - https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
Here is a discussion where other members are talking about their 'wait' until they can be referred for a liver transplant. There are many different experiences and things being shared. I tthink that is you read thru the responses you will see that everyone is on a different timeline.
You and your sister are not alone.
@mahdi123, I invite you to read and to participate with questions to anyone:
It's not all about the MELD Score - https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
Has your sister's doctor talked to you about whether there is a score to measure when your sister will be referred for transplant?
-
Like -
Helpful -
Hug
2 ReactionsRosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.
Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.
Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.
I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.
I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.
My MELD score is only 9, or was 9 the last time I checked.
How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.
Any words of wisdom? What’s the next step for me.
I have horrible itching in the evening and fatigue during the day. Labs all good, and Meld of 12.
@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.
"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.
Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/
Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?
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1 Reaction@johnshaw, @jacinta,
You are not alone with itching. I want to invite you to the discussion, Liver disease itching, where you cwill meet other patients who also experience itching with liver disease.
https://connect.mayoclinic.org/discussion/liver-disease-itching/
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1 Reaction