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.

@tbirdmunchkin | @glinda | May 26, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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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Hi @myson, I'm glinda I have had a heart transplant but I also understand about the sarcoidosis as I have sarcoidosis of the skin and my transplant team from mato Rochester MN. Keeps a close eye on my lungs as a precaution from the sarcoidosis they want to make sure it doesn't move to my lungs and the same thing with my eyes I see a specialist for my eyes do to the sarcoidosis I was actually diagnosed with it right after I learned that I would need a heart transplant so for me I check my skin everyday for a breakout of the sarcoidosis to make sure I'm clear I use steroid creams everyday also so to keep the sarcoidosis under control so I do understand how your son must feel but to be clear my heart transplant wasn't do to the sarcoidosis than good it was do to a cold but my heart is watched very carefully so I don't develope the sarcoidosis in it also I understand how he felt with not wanting the transplant as I felt the same way when I found out I figured I had done everything I could to make sure my son and daughter were taken care of along with my mom but my doctor's in Rochester gave me no choice they told me they were puttinge on the list as soon as they could as physically I was healthy enough and young enough to handle it .all I can say is to give your son all the support and love you can. Anytime you would like to talk or even your son I'm always willing to listen you can find me here on Mayo connect along with a lot of other people willing to help and talk or just willing to listen if you need it.
Glinda

REPLY
myson | @myson | May 27, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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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Thank you Glinda. I was stunned reading your message and your daily worries about sarcoidosis. I find it unbelievable that you have to monitor your eyes, heart, skin, and lungs. And I don't know if our son's lung sarcoidosis can show up in other organs. So far, his overall health is good. Mayo told him in April that the disease has caused his lungs to shrink -- causing his chest cavity to get smaller and his diaphragm to move up. This means that even though he's 5'8" tall, they will search for lungs of a person 5'2" tall or around 12 years old. He is 45.
Thank God, he has an extremely good attitude. He tells me that he is "living the dream." He tries to look strong when we visit (3 hrs away) by not using his oxygen when we first get there or if we go to dinner. Then, at night he needs it badly. I want him to stop doing this. Makes me so nervous. Any advice on how to tell him that?
I read a story about a young man (with Mayo) that got his lungs (2) last November. He provided a photo of himself and his daughter out fishing with no oxygen. He has 75% lung capacity (our son is 40%). This story gave me hope.
Thanks for being on this blog and I hope to talk to you again.

REPLY
@tbirdmunchkin | @glinda | May 27, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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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@myson, I do know that sarcoidosis can spread to other organs and so far your son is lucky and I'm lucky that it hasn't while I was in Rochester MN. After my transplant I picked up some pamphlets on sarcoidosis as I wanted to learn everything I could on it and how it would affect me and my new heart. My suggestion is to have your son talk to the doctors and get all the information you can on sarcoidosis. And I never had to have oxygen before my transplant and the doctors could never figure out why when my heart was only getting an eighth of my blood that was oxygenated to my organs. But my suggestion on that would be to have a sit down face to face with your son and tell him how you feel about him straning his lungs by not using the oxygen when you are there or go out to a restaurant let him know that even with the oxygen he is still strong and just because he has to use it doesn't make him look frail or sick in your eyes I would also talk to hi wife and see if he does the same thing with her when the go out let him know that there is nothing to be ashamed of with having to have oxygen right now that after his transplant he won't need it anymore that the oxygen is only temporary until he gets his new lungs don't let him give up on believing that his new lungs will come because I have faith that they will and he will feel great when he gets them I'm sorry I wasn't much help but as long said before any time you want to talk I'm always willing to listen and try to help.
Glinda

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 28, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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.

Jump to this post

@myson, I think that our kids like to protect Mom from worry by being strong. I also did this in reverse - I tried to protect my sons when they came to visit me by acting strong! The caught on to my act, when my symptoms became to obvious to hide.
I'm happy that you have joined this discussion.
Rosemary

REPLY
JK | @contentandwell | May 28, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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.

Jump to this post

@myson it is scary to pursue a transplant of any kind. For a long time I was on the list but not sure I would go through with it, and then as things progressed and got worse I welcomed that call that they had a liver for me. I don't know much about lung transplants but I just happened to be talking to someone this past weekend who had a friend who had one recently and he was doing fabulously, and so happy to have had it. Poor guy, he lives in Bar Harbor, Maine so he had to go to Boston for the transplant which is five hours from there when there is no traffic! When he got close he had to live down there for a while to be close to the hospital.
What is the wait generally for a lung transplant? Livers are over a year, I think generally about 1.5 years, and kidneys are much longer than that.
As I said, it is scary, but I'm sure when it is done your son will feel so much better and be so happy to have done it.
JK

REPLY
JK | @contentandwell | May 28, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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.

Jump to this post

@rosemarya same as my son and daughter. My son expressed his concern and worry, mainly to my husband, and my daughter holds more inside but I know she was very concerned also. She tried to act like what I was going through was no big deal and I would be fine. I know that was her way of trying to make me feel less worried, but honestly, I didn't worry that much overall. I figured whatever happened would happen.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 30, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

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.

Jump to this post

@myson, I want to share this with you.
https://connect.mayoclinic.org/newsfeed-post/caregiver-qa-with-steve-vorseth-l-m-s-w/
What else would you like to know about caregiving?
Rosemary

REPLY
myson | @myson | Jun 6, 2018

Good morning ... And it's a hot one today in SC. My husband and I are discussing driving to Jacksonville for a few days and going to a support group meeting and maybe meeting with a nutritionist. We want to stay connected and show our son our continued commitment to him. Is this doable?

REPLY
8 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 6, 2018
In reply to @myson "Good morning ... And it's a hot one today in SC. My husband and I are..." + (show)
@myson

Good morning ... And it's a hot one today in SC. My husband and I are discussing driving to Jacksonville for a few days and going to a support group meeting and maybe meeting with a nutritionist. We want to stay connected and show our son our continued commitment to him. Is this doable?

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@myson, I want to introduce you to Terri, @windwalker . Terri is one of our mentors, and she has a remarkable story of her own. I know she will be able to help you on this!
Rosemary

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