Tiffany's Thread (updates and prayers, and a place where she can smack Joe in public when he needs it :)

#3,430
#3,430
Dr just sent her a bunch of information a little bit ago. Reading through it, and it's amazing what Drs can do. I don't know the order of anyone else who has been selected, but if she does this, she's going to be one of the faces of a ground breaking procedure.
 
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#3,431
#3,431


4 minutes on this video, it was in the info he sent her, and that's one of the two Drs who would do this. I've been so caught up, IDK if I explained a couple of things. They have done this, but only on living body patients. Meaning, the patient was completely brain dead, but had agreed prior to donate their body to the university for research. Also, everything in their body functioned perfect, except the brain. Each time they performed it, it worked, so they now feel confident moving forward. He explained all that on the phone, and the risks, and also that part of the reason for her staying so long, would be to make a neo bladder if something went wrong. So we completely understand the risks, like I have said if it's going to hurt her, then I pray it doesn't happen. That said, be it the bladder working, or neo bladder, he said the main thing is to close her stoma, undo her bowels from her urinary system, and it should stop the infection.
 
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#3,433
#3,433
joevol33 said:


4 minutes on this video, it was in the info he sent her, and that's one of the two Drs who would do this. I've been so caught up, IDK if I explained a couple of things. They have done this, but only on living body patients. Meaning, the patient was completely brain dead, but had agreed prior to donate their body to the university for research. Also, everything in their body functioned perfect, except the brain. Each time they performed it, it worked, so they now feel confident moving forward. He explained all that on the phone, and the risks, and also that part of the reason for her staying so long, would be to make a neo bladder if something went wrong. So we completely understand the risks, like I have said if it's going to hurt her, then I pray it doesn't happen. That said, be it the bladder working, or neo bladder, he said the main thing is to close her stoma, undo her bowels from her urinary system, and it should stop the infection.
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WOW....like you said Joe, its amazing what Drs can do and yet it is so hopeful for Tiffany and scary at the same time, but I am praying that if it is the best thing for Tiffany that it will happen.
 
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#3,435
#3,435
Little update, we've been back and forth on the phone, and texting with the dr. this morning. So far so good, they've set up a zoom call with us, and the team that will do it next week. After that, we'll go out there for a couple of days to sit and talk. They want to go over everything, get to know us, and us get to know them, so we'll all be more comfortable with each other. They will likely have some preliminary tests done here, and have the results sent to them. Here's the biggie, the others in this study need a bladder, and kidney, Tiffany is the only one who just needs a bladder. What that means, she will be the first person ever to have this surgery. I'm not sure about when we'll go out there, I guess we may find out during the zoom next week. He did say they were aiming to try to do it within the next 3 months. Idk, I'll ask at the zoom, if a bladder is like other transplants, like we'll have to have a bag packed and be ready when they call. We'll see about that next week, but he did say that there'll be zero cost, and that will apply to all care. They will cover our travel, and hotel during all of this. Something I really liked, he wanted to do the zoom Monday, but she has a heart test for her port Monday morning. When she told him that, he was like "we have to get you fixed, there's no way you should have to live life like this at your age ". Lordy, I'm excited, nervous, but so hopeful.
 
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#3,436
#3,436
joevol33 said:
Little update, we've been back and forth on the phone, and texting with the dr. this morning. So far so good, they've set up a zoom call with us, and the team that will do it next week. After that, we'll go out there for a couple of days to sit and talk. They want to go over everything, get to know us, and us get to know them, so we'll all be more comfortable with each other. They will likely have some preliminary tests done here, and have the results sent to them. Here's the biggie, the others in this study need a bladder, and kidney, Tiffany is the only one who just needs a bladder. What that means, she will be the first person ever to have this surgery. I'm not sure about when we'll go out there, I guess we may find out during the zoom next week. He did say they were aiming to try to do it within the next 3 months. Idk, I'll ask at the zoom, if a bladder is like other transplants, like we'll have to have a bag packed and be ready when they call. We'll see about that next week, but he did say that there'll be zero cost, and that will apply to all care. They will cover our travel, and hotel during all of this. Something I really liked, he wanted to do the zoom Monday, but she has a heart test for her port Monday morning. When she told him that, he was like "we have to get you fixed, there's no way you should have to live life like this at your age ". Lordy, I'm excited, nervous, but so hopeful.
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Covering all costs. That is amazing.
 
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#3,438
#3,438
I do think my favorite thing is he did Billy the Kid her, he said "I'm going to make you famous "🤣. He was talking about her being the first ever, she will be a part of medical history.
 
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#3,442
#3,442
joevol33 said:
No kidding, after the past few years, all the heartache, stress, and depression, I have no way to rightly express my feelings, except thank you Jesus for a feeling of hope.
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This would be a world wide Jesus praise. I just can't even... if anybody ever deserved the opportunity to share their faith, it's her.
 
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#3,445
#3,445
joevol33 said:
Little update, we've been back and forth on the phone, and texting with the dr. this morning. So far so good, they've set up a zoom call with us, and the team that will do it next week. After that, we'll go out there for a couple of days to sit and talk. They want to go over everything, get to know us, and us get to know them, so we'll all be more comfortable with each other. They will likely have some preliminary tests done here, and have the results sent to them. Here's the biggie, the others in this study need a bladder, and kidney, Tiffany is the only one who just needs a bladder. What that means, she will be the first person ever to have this surgery. I'm not sure about when we'll go out there, I guess we may find out during the zoom next week. He did say they were aiming to try to do it within the next 3 months. Idk, I'll ask at the zoom, if a bladder is like other transplants, like we'll have to have a bag packed and be ready when they call. We'll see about that next week, but he did say that there'll be zero cost, and that will apply to all care. They will cover our travel, and hotel during all of this. Something I really liked, he wanted to do the zoom Monday, but she has a heart test for her port Monday morning. When she told him that, he was like "we have to get you fixed, there's no way you should have to live life like this at your age ". Lordy, I'm excited, nervous, but so hopeful.
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Wait, so she's actually accepted into the transplant program? Or you're going out there to determine if she will be accepted? What a whirlwind!!
 
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#3,446
#3,446
VolNExile said:
Wait, so she's actually accepted into the transplant program? Or you're going out there to determine if she will be accepted? What a whirlwind!!
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She's their pick, unless something crazy happens, he said she fits the best criteria. She's needing something done bad, she's on the IVIG already, on immune suppression already. He said she's the perfect candidate to be the first one. She did find out, other than being on a waiting list, it's like any normal transplant. We'll have to be ready to go as soon as they get a bladder. On their end they're already approved to go ahead, we just have to go through the process of meeting them, doing tests and labs, then we wait on a bladder. As soon as everything is done on her end, the first match they get we're on our way.
 
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#3,447
#3,447
Also, I love my boss. Came in and went straight to talk with her, because I've never been through this process of using FMLA, or anything. She gave me all the information, explained to apply for the new caregiver days, because that's like 2 and a half weeks of paid time on my schedule (no pay for FMLA. So if they do it this year I can use those 10 days, then she'll likely be coming home after the first of the year, (sometime next year) and I can use those 10 days again. She said apply for both, because if something is going on and I have to go there, or get her home and need time to help her with anything. That's awesome, but her joy for Tiffany, she cried when I told her everything, dang made me cry 🤣.
 
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#3,448
#3,448
joevol33 said:
She's their pick, unless something crazy happens, he said she fits the best criteria. She's needing something done bad, she's on the IVIG already, on immune suppression already. He said she's the perfect candidate to be the first one. She did find out, other than being on a waiting list, it's like any normal transplant. We'll have to be ready to go as soon as they get a bladder. On their end they're already approved to go ahead, we just have to go through the process of meeting them, doing tests and labs, then we wait on a bladder. As soon as everything is done on her end, the first match they get we're on our way.
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That is so, so, so amazing! OMG! - I'm adding/ updating her on the prayer list Sunday.

Anyone maybe thinking about whether to check the organ donor and/or research boxes on your driver's license: this is what that's all about. You must follow what you feel is right, obviously, but this is why they call it the Gift of Life. Wow.
 
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#3,449
#3,449
news.keckmedicine.org

Urologists to perform world’s first bladder transplant

LOS ANGELES — No one has ever performed a bladder transplant in humans. But that may be about to change.Urologists with Keck Medicine of USC have launched a clinical trial to perform the world’s first human bladder transplant.The trial is actively screening potential participants for this...
news.keckmedicine.org news.keckmedicine.org

From April 30. They're ready.
 
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#3,450
#3,450
joevol33 said:
Also, I love my boss. Came in and went straight to talk with her, because I've never been through this process of using FMLA, or anything. She gave me all the information, explained to apply for the new caregiver days, because that's like 2 and a half weeks of paid time on my schedule (no pay for FMLA. So if they do it this year I can use those 10 days, then she'll likely be coming home after the first of the year, (sometime next year) and I can use those 10 days again. She said apply for both, because if something is going on and I have to go there, or get her home and need time to help her with anything. That's awesome, but her joy for Tiffany, she cried when I told her everything, dang made me cry 🤣.
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That is so wonderful. Good bosses, at good companies.
 
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