1. < Transplants

Just wondering...sometimes after the call, it doesn't work out?

Posted by jodeej @jodeej, Jul 5, 2018

My husband is waiting for a liver. I've read and heard that sometimes you get the call only to find out after you get to the hospital that it won't work. Does this happen often? I don't remember being told this in any of our appointments. I want my husband to be prepared in case it happens to him.
Blessings,
JoDee

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 23, 2018
In reply to @myson "@jodee. Our son is at Mayo today for his 3 month evaluation (double lung). The first..." + (show)
@myson

@jodee. Our son is at Mayo today for his 3 month evaluation (double lung). The first checkup was April after a 6 month deferment. His lung breathing capacity had decreased 10% so we are curious to hear about today's findings. Getting back to you about using social media to get the word out that your husband needs a liver transplant. Also, there's your local newspaper. Don't be afraid to call a local reporter to ask about an article asking for help. After all, it takes a village, right? Also, notify the business your husband works/worked for. People are unaware that they can help, also unaware that their own liver will rejuvenate. There is so much to learn and the medical community with research beyond our comprehension is amazing every day. Have a blessed day.

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@myson, You are a good mom!
Is there someone who accompanies him to his appointments? his caregiver? This person might be the one to try to get him to adhere to his oxygen regiment.

REPLY
myson | @myson | Jul 25, 2018
In reply to @myson "@jodee. Our son is at Mayo today for his 3 month evaluation (double lung). The first..." + (show)
@myson

@jodee. Our son is at Mayo today for his 3 month evaluation (double lung). The first checkup was April after a 6 month deferment. His lung breathing capacity had decreased 10% so we are curious to hear about today's findings. Getting back to you about using social media to get the word out that your husband needs a liver transplant. Also, there's your local newspaper. Don't be afraid to call a local reporter to ask about an article asking for help. After all, it takes a village, right? Also, notify the business your husband works/worked for. People are unaware that they can help, also unaware that their own liver will rejuvenate. There is so much to learn and the medical community with research beyond our comprehension is amazing every day. Have a blessed day.

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@rosemarya. Thank you. His wife does accompany him, although during this visit he was dropped off at a hotel the night before and she left with the kids to take one child to a dance class/competition. She met him when the tests were over and he met with the final Doctor. They all did discuss him not using the oxygen often enough and talked about his memory loss. The doctor explained the urgency of using the oxygen. He just does what he wants. And I get that. But really it's not fair to his family for him to turn his back on help (oxygen). This may be how he reacts to fear. He was told he has a hiatal hernia too and maybe this would put him out of contention for lungs. Things feel like they are snowballing. We are down.

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myson | @myson | Jan 11, 2019

Sharing the news. Our son had a double lung transplant early November. What an amazing experience for all of the family. He is doing great. In fact, us caregivers came home yesterday. He wishes to handle things on his own. (You can only live with your parents so long!). When bronchs are scheduled, we will drive back to him to escort him for this procedure. He has been so strong. 10 weeks post surgery and he is self sufficient and DRIVING. God is great......all the time. We pray and honor his Donor constantly. The staff at Mayo are the best (in the world) and we appreciate them and will forever.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 11, 2019
In reply to @myson "Sharing the news. Our son had a double lung transplant early November. What an amazing experience..." + (show)
@myson

Sharing the news. Our son had a double lung transplant early November. What an amazing experience for all of the family. He is doing great. In fact, us caregivers came home yesterday. He wishes to handle things on his own. (You can only live with your parents so long!). When bronchs are scheduled, we will drive back to him to escort him for this procedure. He has been so strong. 10 weeks post surgery and he is self sufficient and DRIVING. God is great......all the time. We pray and honor his Donor constantly. The staff at Mayo are the best (in the world) and we appreciate them and will forever.

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@myson, I am very happy for your son! This is fantastic news.
I do not hear from many lung transplants, but it sounds like he is making good progress toward returning to a healthy life. I know that you are proud of him for his strength and his determination. I agree with everything that you have written in your message and I would 'double like' if possible.

How often will he go back to Mayo for bronch procedures?

Thank you for sharing: It is success stories like this that provide Hope and Encouragement for others. Miracles are happening.

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1 reply
jodeej | @jodeej | Jan 11, 2019
In reply to @myson "Sharing the news. Our son had a double lung transplant early November. What an amazing experience..." + (show)
@myson

Sharing the news. Our son had a double lung transplant early November. What an amazing experience for all of the family. He is doing great. In fact, us caregivers came home yesterday. He wishes to handle things on his own. (You can only live with your parents so long!). When bronchs are scheduled, we will drive back to him to escort him for this procedure. He has been so strong. 10 weeks post surgery and he is self sufficient and DRIVING. God is great......all the time. We pray and honor his Donor constantly. The staff at Mayo are the best (in the world) and we appreciate them and will forever.

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@myson what fantastic news! I am so happy for all of you! I remember all the emotions of that day. It is such a humbling experience. Many blessings for all of you,
JoDee

REPLY
myson | @myson | Jan 12, 2019
In reply to @rosemarya "@myson, I am very happy for your son! This is fantastic news. I do not hear..." + (show)
@rosemarya

@myson, I am very happy for your son! This is fantastic news.
I do not hear from many lung transplants, but it sounds like he is making good progress toward returning to a healthy life. I know that you are proud of him for his strength and his determination. I agree with everything that you have written in your message and I would 'double like' if possible.

How often will he go back to Mayo for bronch procedures?

Thank you for sharing: It is success stories like this that provide Hope and Encouragement for others. Miracles are happening.

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There have already been so many bronchs. All tests come back good, which is great. There is an issue with the left "connection" being weak and needing ballooning...which they may have to stent. So, every week a bronch is scheduled but can be deleted as long as his daily spirometer tests stay good. There is so much to do every day -- forever. God bless him. We were so nervous because he began coughing more and just didn't sound good. Turns out to either be medication or most recently this weak connection. So scary.
If there's one recommendation I can make to anyone coming to Jacksonville for a lengthy stay ... Avoid the Mayo Inn. The rooms are filthy. Needs shut down and renovated. The filth is shocking.

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 12, 2019
In reply to @myson "There have already been so many bronchs. All tests come back good, which is great. There..." + (show)
@myson

There have already been so many bronchs. All tests come back good, which is great. There is an issue with the left "connection" being weak and needing ballooning...which they may have to stent. So, every week a bronch is scheduled but can be deleted as long as his daily spirometer tests stay good. There is so much to do every day -- forever. God bless him. We were so nervous because he began coughing more and just didn't sound good. Turns out to either be medication or most recently this weak connection. So scary.
If there's one recommendation I can make to anyone coming to Jacksonville for a lengthy stay ... Avoid the Mayo Inn. The rooms are filthy. Needs shut down and renovated. The filth is shocking.

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It sounds like your son is doing well. I know that as a mother, you are happy and proud of him.

I want you to know that all of us transplant recipients and families share many of the same concerns about the new life after transplantation. I want you to feel welcome to browse any of the discussions on Connect and you are invited to join in anywhere, anytime, with comments or questions.
Here is some information that you will find useful as you support youir son: Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
I would like you to look at the Liver transplant support group and you will meet another mother (@stella25) who is supporting her son as he gets closer to his transplant.
https://connect.mayoclinic.org/discussion/liver-support-group/?pg=4#chv4-comment-stream-header
I look forward to your next update.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 12, 2019
In reply to @myson "There have already been so many bronchs. All tests come back good, which is great. There..." + (show)
@myson

There have already been so many bronchs. All tests come back good, which is great. There is an issue with the left "connection" being weak and needing ballooning...which they may have to stent. So, every week a bronch is scheduled but can be deleted as long as his daily spirometer tests stay good. There is so much to do every day -- forever. God bless him. We were so nervous because he began coughing more and just didn't sound good. Turns out to either be medication or most recently this weak connection. So scary.
If there's one recommendation I can make to anyone coming to Jacksonville for a lengthy stay ... Avoid the Mayo Inn. The rooms are filthy. Needs shut down and renovated. The filth is shocking.

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I hope that you mentioned the room condition to the management of the motel. I have never been in Jacksonville so I am unfamiliar with it. You are correct in stressing the need for safe environment for transplant patients. I want to add that this motel is not associated with the Mayo Clinic, other than locational name.

REPLY
1 reply
jodeej | @jodeej | Jan 12, 2019
In reply to @myson "There have already been so many bronchs. All tests come back good, which is great. There..." + (show)
@myson

There have already been so many bronchs. All tests come back good, which is great. There is an issue with the left "connection" being weak and needing ballooning...which they may have to stent. So, every week a bronch is scheduled but can be deleted as long as his daily spirometer tests stay good. There is so much to do every day -- forever. God bless him. We were so nervous because he began coughing more and just didn't sound good. Turns out to either be medication or most recently this weak connection. So scary.
If there's one recommendation I can make to anyone coming to Jacksonville for a lengthy stay ... Avoid the Mayo Inn. The rooms are filthy. Needs shut down and renovated. The filth is shocking.

Jump to this post

@myson I'm glad he's doing so well. It's sad and scary that you lodging was so bad. When you need so much cleanliness, a dirty room is the last thing you need.

REPLY
jeanne5009 | @jeanne5009 | Jan 12, 2019

Where in Jax did you stay?

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