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Are there any other pre-liver transplant caregivers out there?
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!
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@jodeej
JoDee, Three month check-up is pretty much a standard schedule. It can be modified as needed.
I am a firm believer in prayer. I would suggest, since you mentioned your church, that you request prayers for your husband and yourself during this trying time. My husband and I attend 2 separate churches, and each was most generous in their prayers, and emotional support. And a real hit to our egos, was that we had to learn to ask for help. I think you should ask that lady out for coffee - soon.
Getting cold, changing appetite, concentration issues all sound familiar to me. I imaging it is hard for you, just like it was for my husband. You do not have to be a Super Woman Caregiver! Just help him to follow the doctors directions and be available for him and spend time with him.
I want to share what my pastor told me about waiting for a deceased donor: "That person is not going to die because of you. That person is going to die anyway, any he/she has made a decision to give you that gift. That's why you should not feel any guilt."
I hope some of my chatter will give you a little bit of help.
Hugs,
Rosemary
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1 Reaction@chevynova67, During his evaluation process, all of his options will be presented to him/and you.
How to begin? My GI referred me to my regional liver transplant center. They guided me and gave me referrals and directions for everything. I just followed their 'orders'. Otherwise we would have been lost.
Rosemary
@jodeej, @chevynova67, It is right to ask, and ask, and ask! This is about your loved one:-)
At Mayo, they welcome questions. And will tell you, "There is no such thing as a dumb question".
Rosemary
Thank you Rosemary! That was what I needed to hear / read today. We are on the prayer list at our church, my dad's church and several others. I even had a Spanish speaking client that comes to our office put my husband on the prayer list at her church! One of my co-workers had told her where I was when we were at one of our appointments at Mayo. I didn't know about it until the wife of the minister there, who is a former client of ours, was talking to me and asked about him. Our prayer support is AMAZING!
I will ask the lady from our church out for coffee. She does understand what we are going through as her husband was diagnosed with lung cancer soon after they were married. That was 15 years ago! 🙂
I love what you pastor told you. I will remember that.
Thank you again,
JoDee
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1 Reaction@jodeej,
My girlfriend with ovarian cancer was the source of inspiration and support for me. She alone did not shy away from difficult conversations, and we could talk heart-to-heart, soul-to-soul. We also shared much laughter in between. Another support girlfriend was a nurse who was available to talk to me in a relaxed atmosphere about some of my own personal medical fears.
Rosemary
Hi everyone. My husband was just recently listed for liver transplant He is pretty low on the list right now but will get exception points after 6 month waiting period. He had the TACE procedure recently with partial response and course of action is now to do reimaging in 3 months. We are both very anxious about what can happen during this 3 month period as he was getting regular screenings prior to the HCC diagnosis and nothing was seen in the 3 months prior to the diagnosis. I agree this is all so overwhelming and would love to connect with others who understand what what we are going through as well. We also live 5 hours from transplant center and my husband will need to temp relocate once he is higher on the list. I will need to stay behind to continue working up until he is called for transplant and will join him. I am a planner so the uncertainty of when this will be makes it difficult. I’m thinking ahead and guess I will go to work everyday with a packed suitcase once he is higher on list? Are there any caregivers out there with current similar situation or post liver transplant recipient who experienced similar situation?
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2 Reactions@28snash, I want to welcome you to our transplant discussion group on Mayo Connect. I am happy that you have joined this discussion where you will be able to meet other transplant caregivers.
My husband was my caregiver. I received a liver/kidney in 2009. So I am always available to share with you from a recipients viewpoint. I think that you are already taking on the role be doing some preplanning and thinking ahead. That is so important because one thing that we learned is that things don't always go as planned, or according to a definite schedule.
One of the most important things that a caregiver can do is to be present/available. My husband was always 'there' for me when I needed. It even meant that he had to give up his own interests for a while. I know that it was difficult for him, and it pained me as I saw the fear in his eyes as my condition worsened over time. But then, it was a joy to see the sparkle and the smile after my transplant, as I recovered.
We took advantage of the transplant housing at the Mayo Clinic in Rochester, Gift of Life House. For 11 weeks that was our 'home' because we, too, are a great distance from Rochester. So I will suggest that you and your husband begin to investigate the transplant housing facility near your transplant center.
Where will your husband be transplanted?
Rosemary
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2 ReactionsHI @28snash! My husband is also on the liver transplant list. He was diagnosed with HCC May 30 of last year and "we" were listed on the transplant list August 3 with a score of 7. They added 21 to his score on the 3rd of the month and he should be activated this week, I'm guessing. We are also 5-6 hours from Rochester, where his surgery will take place. We were told we can stay home and drive there as we have 10 hours to report. I haven't packed a bag yet, but we do have lists hanging on our bulletin board and I've given maps and instructions of where to go to our children, as they are all grown and on their own. We have discussed the possibility of either staying at the GOL house in Rochester or possibly at our daughter's home, as she is only 3 hours from there, when he is higher on the list. We will see as time goes by what will be best for us. We are both still working full-time, but I think he may be needing to stop in the not to distant future. We shall see how his health goes. Right now his biggest frustration is the "brain fog" that causes confusion and forgetfulness. He's also very tired at the end of the day.
Hang in there! Together we can do this!! 🙂
JoDee
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3 ReactionsHi JoDee-They told us we have to be at transplant center within 6 hours rather than 10 so that is why he is having to relocate as that is cutting it very close for us. We also found a very reasonable place to rent close to the transplant center. Thanks so much for encouragement, needed to hear that! Hopefully you guys will get the call soon with the recent exception points added. Keep us posted:)
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3 ReactionsThanks For your response Rosemary, so good to talk to people who understand and so encouraging. He will be transplanted at Mayo in Phoenix. There is a transplant house there, but we don’t want to leave our Golden retriever behind for that long of a period so we needed a place that would allow pets.
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