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hogan_g1937
@hogan_g1937

Posts: 33
Joined: Jan 09, 2018

Sick Gall Bladder

Posted by @hogan_g1937, Feb 27, 2018

Good morning all, I really enjoy reading all the discussions. My question is my husband is waiting on a liver due to alcohol abuse and Hep-C. He is being treated for HCC. He also has a bad gal bladder that is giving him the blues and he is always in pain. The doctors have said it is too dangerous to remove the gall bladder and they are waiting to remove it when he has the transplant. I am afraid he will get gain green which I have been told can happen. Any suggestions/

Liked by jodeej

REPLY

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

When he had his TACE done 12/27/17, it essentially removed one of the two cysts/tumors that he had, but one of them has a small amount of residual left that needs to be removed. The committee prescribed another procedure, called an RFA (radio frequency ablation) for this remaining portion of the tumor. That is what is going to be done. This radio frequency intervention essentially “burns” up what’s left. This residual being “left” after initial therapy happens in the process of getting rid of the tumors, it’s not an unusual event to have a patient go for further intervention(s) until it’s all removed. What ultimately happens is there is no residual left, and sometimes there is a small residual cavity present that can be seen on the scans. Yes he has been moved up but we don't know how far. I guess we will find out after this next procedure which is scheduled on the 27th of this month.

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

Good morning, his doctors stated that due to the HCC he was moved up on the list. We don't know where he is just yet. He is going in to have another procedure on the 27 of this month, When he had his TACE done 12/27/17, it essentially removed one of the two cysts/tumors that he had, but one of them has a small amount of residual left that needs to be removed. The committee prescribed another procedure, called an RFA (radio frequency ablation) for this remaining portion of the tumor. That is what is going to be done. This radio frequency intervention essentially “burns” up what’s left. This residual being “left” after initial therapy happens in the process of getting rid of the tumors, it’s not an unusual event to have a patient go for further intervention(s) until it’s all removed. What ultimately happens is there is no residual left, and sometimes there is a small residual cavity present that can be seen on the scans.

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@hogan_g1937 RFA was what I had, they just referred to it as ablation though. My lesions were right at the wall of my liver so it made the ablation more difficult because they pump air (or water?) in to separate the liver from other organs. It made it a bit more painful after the ablation, generally they say most people have no pain.
JK

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@contentandwell and @hogan_g1937 I asked where my husband was on the list when he was activated last month and all they would tell me was his score and that there were other people with higher scores than him. I think they may tell you when you are at the top, but before then they don't say much since it is so fluid.

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@hogan_g1937 the list is dynamic so I don’t think they ever tell you exactly where you are. They could say #5 and people could come along in greater need putting you back. In August of 2016 I got two letters from two different people. One said my MELD was 18, the other said 28, so I called to find which was correct. The person I spoke to confirmed that it was now 28 and said I should have my bag packed and make arrangements for any pets or children because at that point it could be weeks or 2 or 3 months. It was just less than a month. Prior to transplant, at MGH, you are a patient of a hepatologist. When they found out that I had my transplant they were thrilled, they did not expect it to come so soon. They were so excited for me that I think they might have feared that I wasn’t going to make it, I had really gone downhill.
What is your husband’s MELD? Depending on your region and blood type the MELD at which you get called can vary a lot. If you are not on Facebook you may want to get on it just to get the updates fromCompare Transplant Centers, they are very helpful in keeping updates on the wait lists in different regions.
JK

@jodeej, @contentandwell and @hogan_g1937, I noticed a very interesting conversation that you were having about MELD scores. I want to share this link with you:The MELD Score: Definitions and Frequently Asked Questions

https://connect.mayoclinic.org/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

If you have not already discovered the Pages section on Connect, I would like to point it out to you. The Newsfeed section should be especially informative for you.
https://connect.mayoclinic.org/page/transplant/

Rosemary

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@jodeej, I only knew my MELD score when I was first listed. My husband would often inquire about it, but I did not want to know because the thought of surgery scared me beyond belief. My transplant nurse did tell me to make sure that my bags were ready because I was (at that moment) top of list at that transplant center. Long story summary – it did not happen. I was flown to Mayo out of ICU with acute kidney failure and possible cholangiocarcinoma that could not be diagnosed at home.

At Mayo I had to be relisted and I never did know my MELD until I read my surgery summary many months afterwards. My doctors at Mayo assured my that I would get a transplant when there was a suitable match for me. They did tell us to stay in the immediate area and were happy that we told them we were already at Gift of Life.

There is really no way to know because there are so very many variables involved. It is not like waiting in line or holding a ticket. Yes, it is frustrating to have to live with uncertainties.
Just remember that you are in good care. Keep the communication going with your transplant team. Keep on following their instructions and appointment schedules.
Rosemary

@rosemarya

@jodeej, @contentandwell and @hogan_g1937, I noticed a very interesting conversation that you were having about MELD scores. I want to share this link with you:The MELD Score: Definitions and Frequently Asked Questions

https://connect.mayoclinic.org/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

If you have not already discovered the Pages section on Connect, I would like to point it out to you. The Newsfeed section should be especially informative for you.
https://connect.mayoclinic.org/page/transplant/

Rosemary

Jump to this post

@rosemarya This is pretty similar to what I was saying, and of course it's impossible to know where you stand on the list until you are definitely at the top and even then you could be displaced by a person in greater need.

My MELD never went down, it just gradually went up. What I have wondered and have not seen answered anywhere, is does the transplant hospital have some discretion in deciding to whom they offer the liver? It seems as if they should. I realize that they can petition for additional points for a patient but if an appropriate liver comes in can they make a decision on whom will get it? I have always been curious about that because I was transplanted at a lower number than typical in Boston but was getting increasingly sicker. The apparently increase the MELD at set intervals and mine was not yet increased, but I suspect it would have been. I did mention that once to someone in the transplant unit but the answer was vague.
JK

@jodeej

@hogan_g1937 the way my husband learned he had Hep C was because he had his gall bladder removed. He also has HCC and his score was recently bumped up due to that. Unfortunately I do not have any ideas what you could do for pain control in the mean time other than to suggest yoga or deep breathing to get through it. I know this isn't much help.
JoDee

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@hogan_g1937 Have you tried meditation or deep breathing for the pain and sleep? Yoga is wonderful for that! 🙂

@jodeej

@hogan_g1937 the way my husband learned he had Hep C was because he had his gall bladder removed. He also has HCC and his score was recently bumped up due to that. Unfortunately I do not have any ideas what you could do for pain control in the mean time other than to suggest yoga or deep breathing to get through it. I know this isn't much help.
JoDee

Jump to this post

No he has not. Something I will definitely suggest to him. He does get plenty of exercise bike riding and walking. he was in excruciating pain last night and this morning. I felt bad because I had to leave him to come to work.

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

His last MELD score that I can remember was 12 but it has been as high 23. Since being diagnosed with HCC we were told it pushed the MELD score up, however we have not been told what it was pushed up to. He has a procedure on the 27th of this March to treat the HCC. Hopefully we will know more as the waiting list and his MELD score.

@jodeej

@hogan_g1937 the way my husband learned he had Hep C was because he had his gall bladder removed. He also has HCC and his score was recently bumped up due to that. Unfortunately I do not have any ideas what you could do for pain control in the mean time other than to suggest yoga or deep breathing to get through it. I know this isn't much help.
JoDee

Jump to this post

@jodeej When you say yoga, must it be done just before going to bed or does it help to make you more relaxed overall so you can get to sleep more easily? I have a lot of trouble getting to sleep, my mind picks that time to swirl around. If I take a nap during the day I go right to sleep but not at night at all.
JK

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@hogan_g1937 What caused his MELD to go down? That never happened to me so I just assumed at the time that as time went on it just continued to increase because the liver was getting worse.
JK

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

In the beginning my husband was very ill with ascites, jaundice, HE and everything else that comes with ESLD for about a year and a half. The HE episodes, ascites, and the jaundice just stopped. Where he was being drained every two weeks to not being drained in over a year now. He has not had an HE episode in over a year. So my guess is because he is overall doing well that his MELD score dropped and his labs numbers was fair to good. His only discomfort is the pain that he experiences daily.

@rosemarya

@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since your earlier post in January? I can understand him feeling 'blue' with the pain he is currently experiencing. I do not have any experience with the gall bladder issue. It sounds like his doctors have his best interest in mind by avoiding a surgical procedure that would be dangerous for him at this time. Try to take some comfort in knowing that they want what is in his best interest, and try to hold on to the hope that this is a temporary situation.

I have learned that we cannot prevent emergencies, but the good news is that we can do our part by taking immediate action if/when needed. In my own experience, while waiting for my liver transplant, when my kidneys failed suddenly, my husband took immediate action and got me to the ER.. I understand your fear. And I don't want to add fear, but are you aware of the signs of infection that would require immediate action?
Here is information about the gall bladder if you want to look at it.
https://www.mayoclinic.org/diseases-conditions/cholecystitis/symptoms-causes/syc-20364867

Is he currently active on the transplant list? What are they telling you about pain relief?
Rosemary

Jump to this post

@hogan_g1937 to what do they attribute the improvement? I never had jaundice and did not have ascites until very shortly before my transplant but my MELD did keep going up.
JK

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