1. < Transplants

Sick Gall Bladder

Posted by hogan_g1937 @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/

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 28, 2018
In reply to @jodeej "@hogan_g1937 the way my husband learned he had Hep C was because he had his gall..." + (show)
@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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@jodeej, You are so-o-o right to always check with the doctor:before taking anything 🙂
Rosemary

REPLY
hogan_g1937 | @hogan_g1937 | Mar 1, 2018
In reply to @jodeej "@hogan_g1937 the way my husband learned he had Hep C was because he had his gall..." + (show)
@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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I do feel hopeless and wish I could take some of his pain just to give him some relief. I too am sick with breast cancer, however I have not been sick from the chemo and radiation, thank God just a little pain in my feet from the chemo.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 1, 2018

@hogan_g1937, I care and I am concerned about you, too. My husband has told me that he always wished there was someone he could talk to during his caregiving time. You do not have to do this alone.

Have you looked at the Pre-transplant caregiver discussion that Colleen referred to? I think you will find some peace and companionship within that conversation with others who are currently care-giving for their pre transplant loved ones.
Click. Read, Join the conversation.
If you want to direct your response to a particular individual: Copy and Paste their @name and they just like I did yours.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/
I also want to share our Caregiver Discussion Group where our mentor @IndianaScott will be there to meet you if you would like that. https://connect.mayoclinic.org/group/caregivers/

@hogan_g1937, I want to continue this conversation with you. I hope that some of these suggestions will help you along the way.

Take care of yourself, Give your husband a hug. Keep in touch.
Rosemary

REPLY
1 reply
hogan_g1937 | @hogan_g1937 | Mar 2, 2018
In reply to @rosemarya "@hogan_g1937, I care and I am concerned about you, too. My husband has told me that..." + (show)
@rosemarya

@hogan_g1937, I care and I am concerned about you, too. My husband has told me that he always wished there was someone he could talk to during his caregiving time. You do not have to do this alone.

Have you looked at the Pre-transplant caregiver discussion that Colleen referred to? I think you will find some peace and companionship within that conversation with others who are currently care-giving for their pre transplant loved ones.
Click. Read, Join the conversation.
If you want to direct your response to a particular individual: Copy and Paste their @name and they just like I did yours.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/
I also want to share our Caregiver Discussion Group where our mentor @IndianaScott will be there to meet you if you would like that. https://connect.mayoclinic.org/group/caregivers/

@hogan_g1937, I want to continue this conversation with you. I hope that some of these suggestions will help you along the way.

Take care of yourself, Give your husband a hug. Keep in touch.
Rosemary

Jump to this post

yes I have read all and yes it is so helpful I appreciate all the information and discussions. Thanks a million

REPLY
JK | @contentandwell | Mar 4, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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

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@hogan_g1937 Where is he on the list now? I too had malignant lesions in my liver. When they discovered them the doctor basically said it was good news and bad news. Good because it moved me up on the list by a few points, bad because I had to go through an ablation to get rid of them.
Thankfully the ablation seemed to take care of them, although they did discover some lingering malignancy when they dissected my liver so I will need to have MRIs for a while to make sure they did not metastasize. I choose to believe that they are all gone now.
JK

REPLY
hogan_g1937 | @hogan_g1937 | Mar 5, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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.

REPLY
hogan_g1937 | @hogan_g1937 | Mar 5, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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.

REPLY
JK | @contentandwell | Mar 5, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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

REPLY
jodeej | @jodeej | Mar 6, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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.

REPLY
JK | @contentandwell | Mar 6, 2018
In reply to @rosemarya "@hogan_g1937, I am sorry to hear of your husband's continuing pain. Has it become worse since..." + (show)
@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

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