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.

jeanne5009 | @jeanne5009 | May 11, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@ro@semaryra

REPLY
jeanne5009 | @jeanne5009 | May 11, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@rosemarya
Sorry about the blank reply....lol. Sometimes my brain doesnt want to work.
Yes I have my schedule and was able to add a Mammogram while Im there. Thats always a scary one since my Mom passed away from breast cancer at 53 and Ive had a non malignant lump removed.
Otherwise...plans are going well. I was an executive secretary amongst other things so Im not happy until the last detail is nailed down.
I have an insurance coordinator that is dealing with that end of it. She said they used to give $10000 loaded credit cards to use for travel / lodging...per lifetime. She tells me FL just changed that so Im going to hear today what new plan they have...some things I have no control of...
Its a huge help to have this group to direct us through the maze. As I am reading it is encouraging to see how positive the post transplant graduates are. There is hope.
And...as my luck would have it..my last bloodwork dropped me back to meld 6..Wont get listed with that...! If anything..Im feeling worse. The hepatologist at Mayo says I have complicating issues so that is why they are considering me. Can we just get back to normal already??? lol
What is normal....hmmm????

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 11, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@jeanne5009, - I know that you will receive a very complete medical exam. My advice is: Do not concern yourself with your MELD score. Your only concern needs to be to follow what the doctors advise you to do to take care of YOU.

Normal sounds boring! So, think of your condition as Challenging! I sounds better, don't you think?
Rosemary

REPLY
jeanne5009 | @jeanne5009 | May 11, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@rosemarya
You are right..my life is way more challenging than it is boring...lol

REPLY
JK | @contentandwell | May 12, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@jeanne5009 hi Jeanne. Things sound as if they are going well except got your MELD going in the wrong direction. I guess you should be happy because that means that your health and condition have improved but if you don’t feel well it must be discouraging. I have a hard time understanding how some people who seem so sick have low MELDS and others like me who had higher MELDS were able to live almost normal lives through most of the waiting time. I guess I was just extremely fortunate to have been able to function so well.
JK

REPLY
hullsar | @hullsar | May 19, 2018

This group appeared in my Facebook feed just when I realized I was going to need more support than I know how to ask for. My boyfriend went into the hospital to be evaluated for a liver transplant--testing to verify if he is strong enough for surgery before he gets added to the registry. It was supposed to be 2-3 days. We are now on Day 10 and, though he passed all of those tests with seeming flying colors, there is no plan to discharge in sight as his kidney function has deteriorated from trying to handle the fluid in his legs and abdomen, despite multiple taps during his stay.

I am 3 hours away, and am struggling with not knowing how to be useful. His original plan was to leave after testing and get all of his affairs (long-term disability, his rental property, wills, etc) in order. But this twist with the kidneys is making us fearful that he won't be discharged at all while he waits for a liver.

In a lovely (for us) coincidence, for several days, he was sharing a room with a post-transplant patient who lives in our area. He and his wife were able to share so much of their experience and practical advice with us that I thought, "Okay, I can prepare for that. Having bags to pack, and plans to make will take my mind off of the stress of the unknown and the surgery and recovery." But I wasn't prepared for the possibility that he is worse off than we thought, and that there may be no time to prepare ourselves, emotionally, financially, legally, practically, logistically.

I am afraid. And that fear adds to my feeling of uselessness. So I am off to pack a bag.

REPLY
2 replies
jodeej | @jodeej | May 19, 2018

@hullsar you are at the right place. Everyone here has been in some variation of your shoes at some point in this journey. Read posts and ask questions. We're all here to help. Blessings and I wish you the best. JoDee

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 19, 2018
In reply to @hullsar "This group appeared in my Facebook feed just when I realized I was going to need..." + (show)
@hullsar

This group appeared in my Facebook feed just when I realized I was going to need more support than I know how to ask for. My boyfriend went into the hospital to be evaluated for a liver transplant--testing to verify if he is strong enough for surgery before he gets added to the registry. It was supposed to be 2-3 days. We are now on Day 10 and, though he passed all of those tests with seeming flying colors, there is no plan to discharge in sight as his kidney function has deteriorated from trying to handle the fluid in his legs and abdomen, despite multiple taps during his stay.

I am 3 hours away, and am struggling with not knowing how to be useful. His original plan was to leave after testing and get all of his affairs (long-term disability, his rental property, wills, etc) in order. But this twist with the kidneys is making us fearful that he won't be discharged at all while he waits for a liver.

In a lovely (for us) coincidence, for several days, he was sharing a room with a post-transplant patient who lives in our area. He and his wife were able to share so much of their experience and practical advice with us that I thought, "Okay, I can prepare for that. Having bags to pack, and plans to make will take my mind off of the stress of the unknown and the surgery and recovery." But I wasn't prepared for the possibility that he is worse off than we thought, and that there may be no time to prepare ourselves, emotionally, financially, legally, practically, logistically.

I am afraid. And that fear adds to my feeling of uselessness. So I am off to pack a bag.

Jump to this post

@hullsar, I want to welcome you to Connect. I am happy that you found us. I send my best thoughts and wishes to you and your boyfriend. I also send both of you my prayers for strength on this journey.

I am a liver/kidney recipient (2009). I can honestly say that I know what he is feeling right now. It is a good thing that he was right there at the hospital to receive the medical care that he needs.
I will share from my experience, that it is a frightening experience, and changes can happen rapidly. My own advice to you is to accept that it is Okay to ask for help from others: Nurses; family; friends; social worker; chaplain....

We are here, anytime. Do not concern yourself about feeling useless - my husband also had similar feelings at various times while I was receiving care. I want you to know that your presence at his bedside, is what he needs right now.

I will be checking in on this conversation, and I will be available to suppoprt you and to answer your questions.
Rosemary

REPLY
myson | @myson | May 26, 2018
In reply to @steffib "Hi I'm Stephanie. 43 years old waiting to get on the registry. I have many questions..." + (show)
@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

Jump to this post

Hi. We waited to get on the registry for 9 months. I will pray for you today.

REPLY
myson | @myson | May 26, 2018

Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma). He was getting worse and losing a lot of weight from trying to eat clean and from excessive coughing. Last July, after much begging, he agreed and went to Mayo JAX for evaluation. He thought he would come home with new medication but instead found out he needs a double lung transplant. He had more testing in September which resulted in him "not really wanting" to pursue surgery. Denial is probably the best way to describe it. This April though, after hearing that his lungs have gotten smaller, he has agreed to Mayo's terms. He has been listed. My husband is his main caregiver with help from me to take care of "both of them." I read a lot of the posts here and am witnessing the knowledge and compassion among the patients and caregivers. Every time the phone rings we jump. I know we've only been waiting about 6 weeks but the anxiety is sometimes tremendous. Great family and friends helps so much with prayer and good thoughts. Our son is still working, has a loving wife and 3 daughters, all of whom are the apples of his eye. We know the outcome will be good. I welcome any conversation. God bless us all.

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