Peth test: Waiting for transplant

Posted by srcroll1 @srcroll1, Mar 1 4:30pm

Has anyone had a peth test that was positive that hardly is decreasing? My husband had one positive (he was told he could drink for the weekend one last time..long story) so he doesn’t Drink normally but had 6/7 drinks 2 nights before the test it was positive at 30 then 9 days later it was at 28 (he absolutely has not had anything to drink) they told us he has to be drinking because it should have been negative that it drops on half every 4.5 days….makes no sense!!! How is that possible his levels are not dropping? He is trying to get listed for a double lung transplant

Hi @srcroll1, welcome to the Transplants group. I'm afraid I can't answer your question about PEth testing. At Mayo Clinic, consideration for getting listed for transplant is based on multiple factors including length of abstinence, support system, and input from all of the medical and surgical team members and doesn't rely solely on the results of one test.

I'm confused. If his doctors had ordered a PEth test, why would he have been told he could drink one last time before the test? Might there be alcohol in any medication he is taking that would give a positive reading? Have you and your husband been able to talk with a transplant social worker? They can help.

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@colleenyoung

Hi @srcroll1, welcome to the Transplants group. I'm afraid I can't answer your question about PEth testing. At Mayo Clinic, consideration for getting listed for transplant is based on multiple factors including length of abstinence, support system, and input from all of the medical and surgical team members and doesn't rely solely on the results of one test.

I'm confused. If his doctors had ordered a PEth test, why would he have been told he could drink one last time before the test? Might there be alcohol in any medication he is taking that would give a positive reading? Have you and your husband been able to talk with a transplant social worker? They can help.

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We were listed at another center and decided to switch due to we weren’t getting answers on medical questions they weren’t responding to medical issues. We really only went there because my husband was impatient and they told us he wouldn’t make it out of the hospital and they refused to transfer him to any other hospital so it was the only decision at the time to save him. so we went off the list there and had everything transferred. They had us do an online zoom meeting as an introduction (others were there also) they said in the meeting if your going to drink do so this weekend as they require abstinence after that but it would not hurt you if you tested positive on Monday. It was really meant for patients just starting the process they could test positive and then test negative for the few months all the testing takes (they said you only stay positive for 2 weeks even if heavy alcoholism drinking) my husband had already had all the tests done He was honest with them about drinking when we went for clinical and how much etc..honestly he had a few more than he should the one and only night but that was it. He tested positive 2 days later on Monday at 30 and then 8 days later at 28 they said he had to still be drinking even though 1000% he has not. We offered to let them have access to our cameras and gps etc.. as that’s the only way I can think to prove he hasn’t Had anything else is for them to watch him and be able to track everywhere he has been and see he couldn’t have had anything. (They said he had to be consuming 4-5 drinks at least once a week for that level so it should be able to be traced when everything we do is logged or recorded) But they said the test has no false positives and that he has to still be drinking! He is completely healthy other than his lungs (they even said one of the best hearts and swallow tests they had seen) so no reason other than the peth test not take him. We haven’t met the social worker yet as all that was put on hold when he failed the test the second time. It honestly just makes no sense we asked for the second test..we drove 4 hours pulling our kids out of school and dealing with them in the car lol and we can’t adopt our 15 month old son we have had since birth if he doesn’t get the surgery..why would he jeopardize all that for one night of drinking. we asked for an everyday urine test I just don’t know what else to try…sorry I am rambling just so hard because our only option is to go back to the other center and I just have absolutely no faith or trust in them anymore. They did say if he gets treatment and stays sober for 6 months then he would qualify but he doesn’t have 6 months he barely made it out of the hospital and every time we would go to clinic they really feel he should still be in the hospital. Sorry for all the ranting

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@srcroll1, that's a lot to bear. I can hear and feel your anguish and time nipping at your heels. You want to do everything you can to help your partner and family. My recommendation would be to seek counsel from a transplant social worker. You mention that was put on hold. Is it possible for you to request an appointment with the social worker? Consultations may be possible via phone or video conferencing so you and your husband wouldn't even have to leave the house. I don't know if that is an option where he is listed. At Mayo Clinic, phone and video conferencing have become a seamless part of our clinical interactions where appropriate. It's worth inquiring about. Can you do that?

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@colleenyoung

@srcroll1, that's a lot to bear. I can hear and feel your anguish and time nipping at your heels. You want to do everything you can to help your partner and family. My recommendation would be to seek counsel from a transplant social worker. You mention that was put on hold. Is it possible for you to request an appointment with the social worker? Consultations may be possible via phone or video conferencing so you and your husband wouldn't even have to leave the house. I don't know if that is an option where he is listed. At Mayo Clinic, phone and video conferencing have become a seamless part of our clinical interactions where appropriate. It's worth inquiring about. Can you do that?

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I will reach out and see we have done video visits with them so that’s fine and we will drive to whatever it takes..

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@srcroll1

I will reach out and see we have done video visits with them so that’s fine and we will drive to whatever it takes..

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@scroll1, I agree that connecting with the transplant social worker is appropriate. That way you can have a Q & A that is specific to your husband’s situation.
I am a liver/kidney recipient and my experience has been that results over time are important, too.
I wonder if there are other health issues in addition to this one peth test result that are involved here. Has this been discussed with you during his hospitalization?
I’m hoping that you can get your questions answered in a timely manner.

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@rosemarya

@scroll1, I agree that connecting with the transplant social worker is appropriate. That way you can have a Q & A that is specific to your husband’s situation.
I am a liver/kidney recipient and my experience has been that results over time are important, too.
I wonder if there are other health issues in addition to this one peth test result that are involved here. Has this been discussed with you during his hospitalization?
I’m hoping that you can get your questions answered in a timely manner.

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I am not sure they didn’t do any of this test when he was in the hospital he has only had the one night of drinks since mid November..no other alcohol what so ever

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