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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@jodeej, Yes it is possible that you could arrive at the hospital and not have the transplant surgery. A recipient could be deferred for surgery on that day if something shows up during the pre-surgery evaluation. I think that would be a great disappointment, but it can happen.

It is my understanding that a back-up patient is also alerted, just in the event that the #1 patient needs to be deferred.

When I got my call, I was first asked, "How are you feeling?, Any elevated temperatures? " I was also informed that the surgery wasn't 100% until my surgeon saw and inspected the organs. But she was 99% certain it would proceed.

I met a woman who waited only 2 weeks for a kidney transplant, because the 1st person on the list and called to hospital had an infection and temperature. So she, being #2 got the kidney, because it was a match for her.

Rosemary

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@jodeej, I know that this pre-transplant waiting period is extremely stressful for both you, the caregiver and spouse, and for your dear husband, the patient. And I also know by way of my own experience that it is even more difficult due to progression of symptoms related to the liver condition. So I want to encourage you both to think and to pray positive. Keep in mind that the focus of your transplant team is to find the best matched organ for your husband to give him the best possible outcomes.
Hugs and prayers,
Rosemary

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@jodee, I have been thinking about you and praying that you hear something soon. I have a dear friend in Pittsburgh that has been doctoring with a bad liver for many years and just got listed with UNOS a few weeks ago. His daughter reached out on Facebook asking friends and family to be tested to save her Dad. Have you considered this option to get the word out? My friend is awaiting results from 8 people. A lot of people don't know that they can help. I will keep you both in my prayers. We are waiting for double lungs for our son (age 45) who Mayo had as #2 and now #4. He goes back on July 16 for his 3 month checkup. Looking forward to that. He has been listed only since 4/16/18 but it already seems like an eternity. Blesses.

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@rosemarya thank you. I've been praying for God to bring him the perfect liver at the perfect time. I mentioned to him that when we get the call that the surgeon may not transplant and he knew that. So, we shall see what happens. It's out of our hands.
Physically he is still doing quite well. It's the cognition that is still his biggest struggle.

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@myson

@jodee, I have been thinking about you and praying that you hear something soon. I have a dear friend in Pittsburgh that has been doctoring with a bad liver for many years and just got listed with UNOS a few weeks ago. His daughter reached out on Facebook asking friends and family to be tested to save her Dad. Have you considered this option to get the word out? My friend is awaiting results from 8 people. A lot of people don't know that they can help. I will keep you both in my prayers. We are waiting for double lungs for our son (age 45) who Mayo had as #2 and now #4. He goes back on July 16 for his 3 month checkup. Looking forward to that. He has been listed only since 4/16/18 but it already seems like an eternity. Blesses.

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@myson social media does work! I happened across a post randomly and i know it was there for awhile but I saw it & signed up. There are so many reasons why it may not work to donate but with the huge amount of people that use social media, the odds work with you

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@myson

@jodee, I have been thinking about you and praying that you hear something soon. I have a dear friend in Pittsburgh that has been doctoring with a bad liver for many years and just got listed with UNOS a few weeks ago. His daughter reached out on Facebook asking friends and family to be tested to save her Dad. Have you considered this option to get the word out? My friend is awaiting results from 8 people. A lot of people don't know that they can help. I will keep you both in my prayers. We are waiting for double lungs for our son (age 45) who Mayo had as #2 and now #4. He goes back on July 16 for his 3 month checkup. Looking forward to that. He has been listed only since 4/16/18 but it already seems like an eternity. Blesses.

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@myson and @mauraacro
Thank you for the prayers! I always pray for everyone on here as these boards are such a blessing.
I've posted on FB about what is going on, but haven't specifically asked for a donor. We have head a couple people ask what they need to do, though. I haven't heard more from them after that. He is still doing quite well at this point so we will keep waiting.
Blessings,
JoDee

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@jodeej My father had a heart transplant a year ago (7/12/17). This was something they did tell us was a possibility, that he could be called and then not receive the transplant. He had already been in the hospital for about 2 weeks when the call did come. (listed for about 6 weeks) It was probably the longest day ever! We had to wait for everything to align so the surgeon could get the heart. We don't know anything about the donor except the donor was a young female outside of our area and our surgeon had to fly to pick up the heart. Once our surgeon arrived at the donor's hospital and saw the heart he called our other surgeon to say the surgery was a go. They then relayed the information to us that the heart was confirmed. It had been 20 hours from the time we received the call to the time we received confirmation the heart was good. We did not tell extended family or friends that we received the "call" until the heart was confirmed. It seemed easier to us in the event the transplant wouldn't happen. I also know one heart was passed up because my dad had an infection and his doctors and surgeons didn't feel it was the best time or best heart for him. The wait seems so long and can be very difficult. My dad doesn't remember much from the time he went in the hospital to a few months after the transplant. He seems surprised when I tell him things. Just remember you want the best match at the best time! The doctors and surgeons will see to that. I, personally, also believe God does too. Take care and best wishes for a perfect transplant soon!

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@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

@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 my husband got his transplant on the 7th! It's day 10 and he is doing fantastic!
Blessings,
JoDee

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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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@jodeej, Oh My Goodness. My chin about hit the floor. That is fantastic. I am so happy for him and you and your family. I wish you many happy and healthy years with this gift of life. God Bless You.

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