1. < Transplants

Are there any other pre-liver transplant caregivers out there?

Posted by jodeej @jodeej, Jan 29, 2018

Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!

Interested in more discussions like this? Go to the Transplants Support Group.

gaylea1 | @gaylea1 | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

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My MELD score is 25 to 26 and has been that way since Jan 2017.

REPLY
JK | @contentandwell | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

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@gayleaf What region are you in? In some regions that would be the average MELD of patients transplanted. If you are on Facebook you should connect with Compare Transplant Centers, they put out some really good information on all of that, and they help people find a region where they can get a transplant sooner. Of course if you do have them work with you individually there is some type of charge for that but it could be worth it. The information they provide on Facebook though is of course free. Regions 3, 10 and 11 have an average MELD of about 26 or 27 at time of transplant. From what I have heard on here many insurance companies pay for the expenses associated with traveling to a different region to have a transplant sooner. Interestingly Mayo in MN and Mayo in FL are both in those regions. I looked into them myself and I believe that overall the cost of living in those places is more reasonable than in many other places also, and for me, flights from Boston would have generally been reasonable.
I was very fortunate to get my transplant in Boston while I was still MELD 28, the average there is 31.
I had it in my mind that they automatically increased your MELD every three months, probably because my MELD went up every three months. I guess it's just that they evaluate and if things have gotten worse they increase it. I know mine was due to be increased in October and I was transplanted in the end of September.
JK

REPLY
gaylea1 | @gaylea1 | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

Jump to this post

Hi I am actually in London Ontario Canada and my transplant team is at the University Hospital. I don't have to worry about costs as they are all covered by OHIP here. I am interested in your idea of my MELD score moving up. I will have to check that out. Thank you.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

Jump to this post

@gaylea1, @contentandwell,
I want to add another dimension to your interesting conversation by sharing this additional resource about MELD scores.
https://connect.mayoclinic.org/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
Rosemary

REPLY
JK | @contentandwell | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

Jump to this post

@rosemarya Thanks for the refresher, Rosemary. This was also posted in November at which point I did respond to it. I still have never found out if the transplant center does have some discretion in choosing who gets an available liver. For instance if the MELD has not yet been recalculated but they know the patient has gone downhill, are they able to choose that patient over someone else?
Following are my comments that I posted in November about this article:

Interesting article.
Another component of who gets the next liver is Blood Type of course. Being a B was in my favor.
I thought the doctors basically had to abide by the list, what type of input/discretion are they allowed? I was never told I was near the top of the list, at 28 in Boston I was under the impresssion it would be at least a couple of more months. My husband thinks I got it sooner because I worked hard at getting in better shape and losing weight so I was a promising candidate, and would do well after a transplant, which I did.
I think if I thought I was near the top of the list I would have been nervous. As it was, the call was a huge suprise and we took off for Boston, perfectly calm! No time to be nervous. It seems so long ago in some ways and just like yesterday in others. I feel so extremely fortunate.

The other thing I wonder about now is just how often do they recalculate the MELD?

I mentioned in November that a cousin of my new son-in-law was one of the people who created the MELD score system. I had hoped to speak to him at my daughter's wedding but never did get around to it.
JK

REPLY
JK | @contentandwell | Mar 12, 2018
In reply to @bamagirlgina "My husband was just diagnosed and we are still trying to process everything. So glad I..." + (show)
@bamagirlgina

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

Jump to this post

@gaylea1 Things of course may be totally different in Canada, they may not even use the MELD score. The MELD really is a good way to know where you stand though, without it I don't know how you would know.
JK

REPLY
jeanne5009 | @jeanne5009 | Apr 22, 2018
In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)
@colleenyoung

Hi JoDee,
I’m so glad that you started this discussion specific to transplant caregivers. You have a unique journey to forge along side the transplant recipient. Please meet @hogan_g1937 who talks about being a caregiver to her husband waiting a liver transplant. See this discussion:

- Liver Transplant https://connect.mayoclinic.org/discussion/liver-transplant-1/

Also meet @grammyx4 @gaybinator and @fauneconner who are accompanying a family member is waiting for or has had a kidney transplant. While we wait for others to join the discussion, we look forward to learning more about you. What is causing you the most stress during this waiting period?

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Hang in JoDee....you have a long path and your talking about the struggles you are having is actually helping me
I was diagnosed 2 years ago and am trying to get listed.at Mayo in Jax. Lots to learn and yes my caregivers are just as eager to learn more.
This is a wonderful group and even if you dont write in..it is helpful to read what others are facing.
Good luck ...be strong.

REPLY
jodeej | @jodeej | Apr 22, 2018
In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)
@colleenyoung

Hi JoDee,
I’m so glad that you started this discussion specific to transplant caregivers. You have a unique journey to forge along side the transplant recipient. Please meet @hogan_g1937 who talks about being a caregiver to her husband waiting a liver transplant. See this discussion:

- Liver Transplant https://connect.mayoclinic.org/discussion/liver-transplant-1/

Also meet @grammyx4 @gaybinator and @fauneconner who are accompanying a family member is waiting for or has had a kidney transplant. While we wait for others to join the discussion, we look forward to learning more about you. What is causing you the most stress during this waiting period?

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@gaylea1 I just saw this, sorry! I deal with the stress by exercising and prayer. Talking to God really helps me and gives me strength. The people on here are great, too. I hope this helps!

REPLY
jodeej | @jodeej | Apr 22, 2018

@jeanne5009 thank you. This group is wonderful. I've learned so much from them.

REPLY
gaylea1 | @gaylea1 | Apr 22, 2018
In reply to @colleenyoung "Hi JoDee, I’m so glad that you started this discussion specific to transplant caregivers. You have..." + (show)
@colleenyoung

Hi JoDee,
I’m so glad that you started this discussion specific to transplant caregivers. You have a unique journey to forge along side the transplant recipient. Please meet @hogan_g1937 who talks about being a caregiver to her husband waiting a liver transplant. See this discussion:

- Liver Transplant https://connect.mayoclinic.org/discussion/liver-transplant-1/

Also meet @grammyx4 @gaybinator and @fauneconner who are accompanying a family member is waiting for or has had a kidney transplant. While we wait for others to join the discussion, we look forward to learning more about you. What is causing you the most stress during this waiting period?

Jump to this post

@jodeej Thank you for sharing with me. I also meditate and pray. Our transplant clinic has a physio program for both pre and post op transplant patients. I attend every week and work out at home. This does help but every now and then the anxiety sets in. Did you ever get scared closer to the operation? Not of the outcome but the surgery itself?

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