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Are there any other pre-liver transplant caregivers out there?
Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!
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Is Xifaxan usually covered by insurance? (we have bc/bs federal.) And if not, what is the general cost per month. Seems I saw somewhere that it was very expensive.
Holy moly I just googled it. $1,500/ month! Wow! I did see that there are coupons and etc available.
@jodeej I guess I had you confused with someone else, for whom the closest transplant center was Oschner, 4 hours away. Which center is close to you?
I hope your husband's cognition continues to not be severe, and if it does get worse I hope it will only be in isolated episodes like mine was. The episodes were bad and I woke up every morning worrying that day would bring one, but thankfully most days did not. Knowing you are confused and not making any sense is really miserable. I was on lactulose first but when I went to the hepatologist she was able to prescribe the xifaxan and that made a huge difference until after almost a year I had to resume taking the lactulose along with the xifaxan.
JK
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1 Reaction@bamagirlgina xifaxan cost about $2400 a month when I was taking it. To find out which drugstores close to you have the best prices there are a couple of free apps, GoodRx and LowestMed. I am on Medicare and generally paid between $700 and $800 a month but when I got beyond the "donut hole" it went down to under $100 a month. I understand that depending on your financial circumstances you can get it for a hugely reduced price from the drug company that makes it. I think it's made by Salix, you can google it and perhaps get it for a much better price. If you are dealing with HE and can afford it, it's definitely worth it.
JK
@jodeej that's sure a better price than what it was when I was taking it, from June of 2015 until September of 2016. I hated that I had a whole bottle not used but other than sending it to a person online I couldn't find anyway to get it to someone who could use it. Not sending it to someone I had met online was a difficult decision but from what I understand that can be risky.
JK
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1 Reaction@contentandwell we are only a half hour from UNMC in Omaha, NE.
I'm hoping HE doesn't get worse also. Here's trying to work as long as possible so when he gets his transplant he can return to his job. If he uses more than his short term disability they don't have to hold it for him.
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1 Reaction@jodeej, Our insurance covered travel and lodging for i year after transplant. We were able to do our 4 month followup and we scheduled our 1st annual visit within that time frame.
Rosemary
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2 Reactions@gaylea1, Welcome to Mayo Connect. I am happy that you have joined us today. I am a liver/kidney recipient, and a volunteer mentor and I want to let you know that you are always welcome to enter into any conversation that interests you. I also invite you to look thru the Transplant Discussion Groups and the Transplant Pages sections that you can find by clicking on the "Groups" and the "Pages" at the top of this page.
We welcome your questions. And we are happy to provide resources if you need any.
I look forward to continued conversation with you.
Rosemary
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1 Reaction@gaylea1, I walked in your shoes once. And I know how frustrating it is with the failing health and the bothersome symptoms. I did not have HE, but I had more than I needed of the miserable symptoms. The good thought to hold on to is that these are temporary. I know that it seems impossible now, but to quote one of my doctors, "It will happen when the right donor organ is available."
I used to like to work soduku number puzzles, and jigsaw puzzles as a mind occupier. That worked for a while. Holding the laptop and/or keyboarding became too difficult, so I would dictate to my husband messages to my friends and relatives (a group email) and i return I was able to read and hear about life in the 'normal' world. I stopped looking at the clock because it just didn't seem to move at all. And I stopped counting the days that I was listed.
Instead I tried to take it one day at a time.
I do hope that you will get your call in the near future. When you do, Please, come back and tell us about it!.
Rosemary
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1 Reaction@jodeej, @bamagirlgina, @gaylea1, @contentandwell
I did not experience HE. I do not know what you mean by "brain fog".
I got very fatigued and lethargic. Also had ascites and nausea, jaundice. I describe what I experienced as "Living in a world where the entire atmosphere had turned heavy and thick. Breathing, movement, thinking became slow and tiring." Trust me when I say, Yes, it goes away after transplant when that new organ begins to clear those toxins from the body.
Take care of yourselves, listen to your doctors, and follow their advise. Call them when you have questions, and do not delay in seeking treatment when needed.
I was able to return to hiking 6 months after my transplant. Would have been 5 months, but had son's wedding to attend:-)
Hold on to Hope,
Rosemary
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