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

Liked by jerrydrennan

@rosemarya My dad had his one year heart birthday/anniversary on July 12th. We celebrated with a nice dinner and his buddies got him a birthday cake with one candle and sang "happy heart birthday". We also celebrated the all the health care professionals including everybody in CVICU with birthday cake. We do not know anything about the donor so just a special thank you to up above.

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@fatherscaregiver

@rosemarya My dad had his one year heart birthday/anniversary on July 12th. We celebrated with a nice dinner and his buddies got him a birthday cake with one candle and sang "happy heart birthday". We also celebrated the all the health care professionals including everybody in CVICU with birthday cake. We do not know anything about the donor so just a special thank you to up above.

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@fatherscaregiver – Happy Heart Birthday to your Dad!
Thank you for sharing this beautiful tribute!
Rosemary

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@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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@jodee
Such good news..this gives all of us waiting renewed hope for such a special day
Give him a big kiss and a pat on the back for you
There could be some bumps in the road ahead but have faith in yourselves.
You made it this far..be proud@

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@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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A bit of an update on my son. He told us that Mayo said he hasn't changed much in the past 3 months. But, he has told his wife and us that he feels he is getting worse. He still does not wear his oxygen 24/7. Takes it off when he feels like it — especially when he's around people that he doesn't want them to see him that way. Very frustrating. Apparently Mayo told him to think of the oxygen as medicine and that his body needs it. He told us that he's concerned about his memory. He will start to tell you something and then just shuts down and tries to think about what he wanted to say. He presses his lips together, thinking hard. 9 times out of 10 he cannot remember what he was saying. We are going to have a heart to heart with him "again" about this tonight. He won't show us his test results that are on his I Phone too. Makes us feel he's hiding something.

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Wow, sometimes life is a rollercoaster! I am so happy that your husband received a liver transplant, that's just great. On the other hand your son's struggles must be difficult to take. It will be very important for his primary (or authorized) caregiver bring up these new memory concerns to his care team at Mayo as soon as they can. Non-compliance with something as important as prescribed oxygen is something the Mayo team will know how to address. These people are wonderful and seem to have seen everything over the years, call them I promise they'll have great ideas.

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@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.

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@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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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

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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@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

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@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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@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.

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@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.

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@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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@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.

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Where in Jax did you stay?

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