My hubby is currently listed for a liver at Rochester. We live in Kansas City. We were told we have 8-10 hours to arrive when we get the call. We have a 5.5 hour drive with no stops, our plan is to get on the road within 1 hour of the call and make short quick potty breaks.
I’m assuming that you are asking if the diagnosed liver condition will affect the amount of time to arrive at transplant center when you get the Call. So from my patient experience, the answer is no , the diagnosed liver disease does not directly affect the time to arrive. However, that does not rule out the possibility based on a patients condition and transplant team decision.
I my particular situation, I was given 1 hour because I was only 45 min away (Kentucky). After emergency transport to Mayo Rochester, I was hospitalized for 2 weeks. When discharged, the transplant team told me and husband to remain in the immediate area. We were living at the Gift of Life House, 7 blocks away! And since I was ambulatory at that time, we rode on the patient shuttle to the Clinic.
I have read that some patients have needed to arrange transportation from a distance. Please speak to the transplant team about your specific situation. They will be able to provide some guidance about your timing. And have a backup plan- just in case.
He is a pancreatic cancer survivor, 2012. He was 39 years old when diagnosed and we had 4 young children. He had a fatty liver and the chemo he received before his Whipple surgery caused liver damage. He was diagnosed with stage 4 cirrhosis in 2021 and listed with UNOS 10/2022. Unfortunately, his Meld score does not reflect how sick he is. He struggles with hepatic encephalopathy, daily nausea, constant pain, and severe muscle wasting, he is deficient in just about every vitamin and mineral (A, D, B, calcium, copper, iron). He deals with major edema and gets weekly albumin infusions. He now has osteoporosis (just diagnosed) with multiple compression fractures in his back. So all the side effects of the liver failure except the metabolic side that he needs for a transplant. His Meld is very liable ranging 14-18 right now. At his last appointment in April they found 2 lesions in his liver (graded LR3). The lesions are trending towards HCC. The only good thing about that is a new cancer diagnosis will allow for exception Meld points.
Things are pretty rough right now, we have reached the point that we feel like we are hanging on by our finger nails. We have big family support and that helps. Praying for another miracle.
I’m assuming that you are asking if the diagnosed liver condition will affect the amount of time to arrive at transplant center when you get the Call. So from my patient experience, the answer is no , the diagnosed liver disease does not directly affect the time to arrive. However, that does not rule out the possibility based on a patients condition and transplant team decision.
I my particular situation, I was given 1 hour because I was only 45 min away (Kentucky). After emergency transport to Mayo Rochester, I was hospitalized for 2 weeks. When discharged, the transplant team told me and husband to remain in the immediate area. We were living at the Gift of Life House, 7 blocks away! And since I was ambulatory at that time, we rode on the patient shuttle to the Clinic.
I have read that some patients have needed to arrange transportation from a distance. Please speak to the transplant team about your specific situation. They will be able to provide some guidance about your timing. And have a backup plan- just in case.
I was told to temporarily move close to Mayo Phoenix once I became so sick that it was evident I wouldn't survive very long without a liver transplant. I did and within a month of arriving and being listed I received a dual liver/kidney transplant. The MELD score primarily determines the priority of patients for liver transplant. The higher your MELD score the sicker you are and the sooner you will get a transplant. However, you have to be well enough that they believe you will survive the surgery. I went through probably a hundred tests to determine I was healthy enough to survive yet sick enough to need a transplant. My MELD score varied between 25 to 30. Most people are transplanted only if their MELD score is above 25 (30 in some centers). https://connect.mayoclinic.org/blog/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
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No committe decision today want to check lymph nodes committe decision 5-8 the eating game begins very frustrating
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1 ReactionHi @brenny and welcome. It sounds like you're ready for the call and have bags packed.
May I ask what liver condition led to your husband being listed for transplant? How is he doing? How are you doing?
Does the time depend on how the liver condition developed?
What do you mean by eating game begins?
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1 ReactionSorry that should be waiting game begins
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2 ReactionsI’m assuming that you are asking if the diagnosed liver condition will affect the amount of time to arrive at transplant center when you get the Call. So from my patient experience, the answer is no , the diagnosed liver disease does not directly affect the time to arrive. However, that does not rule out the possibility based on a patients condition and transplant team decision.
I my particular situation, I was given 1 hour because I was only 45 min away (Kentucky). After emergency transport to Mayo Rochester, I was hospitalized for 2 weeks. When discharged, the transplant team told me and husband to remain in the immediate area. We were living at the Gift of Life House, 7 blocks away! And since I was ambulatory at that time, we rode on the patient shuttle to the Clinic.
I have read that some patients have needed to arrange transportation from a distance. Please speak to the transplant team about your specific situation. They will be able to provide some guidance about your timing. And have a backup plan- just in case.
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1 ReactionHe is a pancreatic cancer survivor, 2012. He was 39 years old when diagnosed and we had 4 young children. He had a fatty liver and the chemo he received before his Whipple surgery caused liver damage. He was diagnosed with stage 4 cirrhosis in 2021 and listed with UNOS 10/2022. Unfortunately, his Meld score does not reflect how sick he is. He struggles with hepatic encephalopathy, daily nausea, constant pain, and severe muscle wasting, he is deficient in just about every vitamin and mineral (A, D, B, calcium, copper, iron). He deals with major edema and gets weekly albumin infusions. He now has osteoporosis (just diagnosed) with multiple compression fractures in his back. So all the side effects of the liver failure except the metabolic side that he needs for a transplant. His Meld is very liable ranging 14-18 right now. At his last appointment in April they found 2 lesions in his liver (graded LR3). The lesions are trending towards HCC. The only good thing about that is a new cancer diagnosis will allow for exception Meld points.
Things are pretty rough right now, we have reached the point that we feel like we are hanging on by our finger nails. We have big family support and that helps. Praying for another miracle.
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2 ReactionsI am under 45 minute drive from Mayo Jacksonville. So, so fortunate.
I was told to temporarily move close to Mayo Phoenix once I became so sick that it was evident I wouldn't survive very long without a liver transplant. I did and within a month of arriving and being listed I received a dual liver/kidney transplant. The MELD score primarily determines the priority of patients for liver transplant. The higher your MELD score the sicker you are and the sooner you will get a transplant. However, you have to be well enough that they believe you will survive the surgery. I went through probably a hundred tests to determine I was healthy enough to survive yet sick enough to need a transplant. My MELD score varied between 25 to 30. Most people are transplanted only if their MELD score is above 25 (30 in some centers).
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
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