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jodeej
@jodeej

Posts: 344
Joined: Jan 13, 2018

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

Posted by @jodeej, Mon, Jan 29 1:12pm

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!

REPLY

Hi I’m Stephanie. 43 years old waiting to get on the registry. I have many questions as well. I’m going through U of M. I live in Michigan. There website is very informative. Maybe even a little scary for me. I going to an appointment this afternoon to see if I’m ready for the registry. I’ll update later

Liked by @tbirdmunchkin

@jodeej
Hi JoDee. Welcome to Mayo Clinic Connect. You are among friends here on Mayo Connect. Connect is an online support community where patients from all over, share and support each other from their own experiences.
My name is Rosemary and I am a liver/kidney transplant recipient. I also live at a great distance from Mayo Rochester where I transplanted in 2009. That is why I became active in this community as a volunteer mentor-to be able to talk to and share with others. I am happy to help you in any way I can.

I extend my hand (virtually) and I understand what you and your husband are going thru.
How long has your husband been listed for a liver?

I look forward to talking with you.
Rosemary

@steffib

Hi I’m Stephanie. 43 years old waiting to get on the registry. I have many questions as well. I’m going through U of M. I live in Michigan. There website is very informative. Maybe even a little scary for me. I going to an appointment this afternoon to see if I’m ready for the registry. I’ll update later

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@steffib, Hi and welcome to Connect. I am happy to meet you. We are here to support and encourage and learn from each other by sharing from our own experiences. I only can wish that this kind of group had been available to me when I first learned that I would need a liver transplant.
I am a liver/kidney transplant recipient. I had an anonymous deceased donor in 2009.
Questions are always welcome and encouraged!

I hope that your appointment goes favorably for you today. I look forward to hearing from you.
Rosemary

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?

@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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Hi Colleen,
Thank you for the connections. I’ll read the links.What is causing me the most stress? Tough question. I’m not sure if it is the uncertainty of the call for surgery, the planning for the trips back to Rochester for the check-ups or my husbands encephalopathy. I think it is the combo of everything. It just gets so over-whelming and all consuming.

@rosemarya

@jodeej
Hi JoDee. Welcome to Mayo Clinic Connect. You are among friends here on Mayo Connect. Connect is an online support community where patients from all over, share and support each other from their own experiences.
My name is Rosemary and I am a liver/kidney transplant recipient. I also live at a great distance from Mayo Rochester where I transplanted in 2009. That is why I became active in this community as a volunteer mentor-to be able to talk to and share with others. I am happy to help you in any way I can.

I extend my hand (virtually) and I understand what you and your husband are going thru.
How long has your husband been listed for a liver?

I look forward to talking with you.
Rosemary

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Hi Rosemary,
He was just listed this past July, so we are only beginning the journey. It can be so over-whelming at times. We are very thankful for the Gift of Life house! It’s so helpful with cost, but also the other people staying there are so kind and helpful.

Liked by @tbirdmunchkin

@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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Well those three are a good place to start. I think talking about the uncertainty, logistics and how the changes and ups and downs of your husband’s medical status affect you are all good things to talk about here on Connect. Members of the group have been there and you can lean on the knowledge and experience of people who have walked the path before you.

When will you be returning to Rochester? Have you ever used the free concierge services to make travel and accommodation arrangements?

@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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We go back in April for his 3 month check-up. He was diagnosed last May and was officially put on the list in July, so we are relative “newbies”. We have been staying at one of the Gift of Life houses when we go, so I just give them a call when we know when we will be coming. That can be a bit stressful as you don’t know if you’ll be able to have a room until the day before. We’ve only had to stay in a hotel once due to a lack of room, thankfully.

I hate the uncertainty of if or when he will get a liver. Our youngest daughter and myself have tried to be donors but our liver anatomy wouldn’t work. Our son is going to have a work-up, but I highly doubt it will work as he is also smaller than my husband. I feel guilty sometimes when we talk about wanting a deceased donor liver because that means someone has to die in order for him to get one. It’s such a hard thing to wrap your head around.

I’ve been praying for someone to come into my life near by that I can get together with just to talk. (and maybe cry. Lol) We do have a couple from church that immediately came up to us and asked what they can do to help. Thankfully they are also dog lovers, so they have been dog sitting for us when we are gone. I’ve been thinking about asking her if she’d like to go for coffee or supper after work some time.

We are so thankful that my husband can still work and is feeling quite well so far. There are little things like he gets cold quickly, his appetite has changed, (food is another challenge…what will he eat today) and his concentration and reasoning are struggles for him. God is certainly working on my patience!!

Sorry this is so long….it’s just great to be able to bring this up with people that get it.
Have a great day!!
JoDee

Hello~
My husband got diagnosed on Halloween so we are very new to all this. I’m a mom of 5 kids and the stress of just them plus my hubs diagnosis is breaking me. He has had a meld score ranging from 22-24 since oct. only signs are jaundice, minor ascities and now a round of SBP. Dr said today for his evaluation to be coming soon. But he’s very against living donors. I on the other hand am very much for it. Our oldest son turns 18 on feb 16th so we are going to have him tested. I don’t even know where to begin with the transplant. Only thing I do know is that he has been sober since October 10.. and he has Medicaid insurance and dr said they will cover it?? Help??

Liked by jodeej, jeanne5009

Did I mention we are In Alaska and there is a shortage of GI drs.. I just want to know who is the first person I reach out to?? A caseworker? Financial worker? Lost in the wild frontier!

@chevynova67

Hello~
My husband got diagnosed on Halloween so we are very new to all this. I’m a mom of 5 kids and the stress of just them plus my hubs diagnosis is breaking me. He has had a meld score ranging from 22-24 since oct. only signs are jaundice, minor ascities and now a round of SBP. Dr said today for his evaluation to be coming soon. But he’s very against living donors. I on the other hand am very much for it. Our oldest son turns 18 on feb 16th so we are going to have him tested. I don’t even know where to begin with the transplant. Only thing I do know is that he has been sober since October 10.. and he has Medicaid insurance and dr said they will cover it?? Help??

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@chevynova67 …where are you doctoring? I know from what I have read that Mayo does accept Medicaid. When we did our initial work-up we met with a finance person who will explained it all to us.

I know some places do have age limits for living donors. Also, how does your son feel about being his donor? Our daughter spoke up immediately after hearing her dad needed a transplant, but our son is very apprehensive. He’s going to be 25 on Saturday, and we have left the decision totally up to him. My husband hates the thought of our kids doing this for him, but will accept the gift.

Prayer has been a great source of strength for me and I am finding lots of support on here. Virtual hugs to you!! Stay strong….you can do this!

@chevynova67

Did I mention we are In Alaska and there is a shortage of GI drs.. I just want to know who is the first person I reach out to?? A caseworker? Financial worker? Lost in the wild frontier!

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Oh wow….Alaska. Hmmmmm…..Does the doctor’s office you go to or the hospital have a social worker? If so, he or she would be a great resource for you.

Yea we are with providence. I talked to her during his detox but it was bad timing as he was in the middle of ripping his IV’s out. I never even thought about getting one here. Thought it had to be at the place of transplant. I will definitely look into that tomorrow or we’ll later today since it’s almost 530.. thank you! Btw my name is Lindsay

@chevynova67

Yea we are with providence. I talked to her during his detox but it was bad timing as he was in the middle of ripping his IV’s out. I never even thought about getting one here. Thought it had to be at the place of transplant. I will definitely look into that tomorrow or we’ll later today since it’s almost 530.. thank you! Btw my name is Lindsay

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Hi Lindsay, my name is JoDee. 🙂
It doesn’t hurt to ask. She can give you information and point you in the direction you need to go. Best of luck to you!!

@chevynova67

Hello~
My husband got diagnosed on Halloween so we are very new to all this. I’m a mom of 5 kids and the stress of just them plus my hubs diagnosis is breaking me. He has had a meld score ranging from 22-24 since oct. only signs are jaundice, minor ascities and now a round of SBP. Dr said today for his evaluation to be coming soon. But he’s very against living donors. I on the other hand am very much for it. Our oldest son turns 18 on feb 16th so we are going to have him tested. I don’t even know where to begin with the transplant. Only thing I do know is that he has been sober since October 10.. and he has Medicaid insurance and dr said they will cover it?? Help??

Jump to this post

I’ve heard that some people are uncomfortable with living donors but I haven’t heard why, do you know why your husband is opposed to it? Is it because it’s a family member or would he feel the same about any living donor?
I donated a kidney to a stranger (I know her now!) almost 3 weeks ago. Everyone has a different experience but this was very easy for me. The 2 full days of evaluation testing at Mayo was harder on me than the actual surgery. I was in the hospital for less than 30 hours and went back to a limited work schedule yesterday.
I may have this wrong but I thought a nurse told me that for the donor, a liver grows back to its full size within about 6 weeks, Would your husband feel better about a live donor with that knowledge? I don’t know if this site does private messages but if your husband (or son) want to talk to me about how I felt being a living donor, I would be happy to talk with either or both.

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