1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

jeanne5009 | @jeanne5009 | May 13, 2020
In reply to @jerrynord "I am having trouble getting my Tacrolinus medicine. My CVS Drug Store is out as are..." + (show)
@jerrynord

I am having trouble getting my Tacrolinus medicine. My CVS Drug Store is out as are others. They are still trying to get it. Told me to call other pharmacies and then have my doctor write an order at that store. Been trying to get hold of my coordinator at Mayo Jacksonville for 2 days no reply. Anyone else is this situation or have any helpful info,

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Who is your coordinator at Mayo JaX? Mine is Meghan and she is out this week. See if you can reach Will
He is very helpful. Have you tried to reach them thru your portal messages?

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1 reply
jerrynord | @jerrynord | May 13, 2020
In reply to @tjgisewhite "@jerrynord have you tried the pharmacy at the Mayo building? I have also gotten them from..." + (show)
@tjgisewhite

@jerrynord have you tried the pharmacy at the Mayo building? I have also gotten them from Walgreen's here in Jacksonville. Good luck.

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Thanks.

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jerrynord | @jerrynord | May 13, 2020
In reply to @jeanne5009 "Who is your coordinator at Mayo JaX? Mine is Meghan and she is out this week...." + (show)
@jeanne5009

Who is your coordinator at Mayo JaX? Mine is Meghan and she is out this week. See if you can reach Will
He is very helpful. Have you tried to reach them thru your portal messages?

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Haven't tried the Portal yet.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 13, 2020
In reply to @jerrynord "Haven't tried the Portal yet." + (show)
@jerrynord

Haven't tried the Portal yet.

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@jerrynord, yes, use the portal. Send it now and it will be there for someone to see on the morning. When my nurse coordinator is away there is always someone to cover for her.

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JK | @contentandwell | May 14, 2020
In reply to @jerrynord "I am having trouble getting my Tacrolinus medicine. My CVS Drug Store is out as are..." + (show)
@jerrynord

I am having trouble getting my Tacrolinus medicine. My CVS Drug Store is out as are others. They are still trying to get it. Told me to call other pharmacies and then have my doctor write an order at that store. Been trying to get hold of my coordinator at Mayo Jacksonville for 2 days no reply. Anyone else is this situation or have any helpful info,

Jump to this post

@jerrynord That's scary. I am on sirolimus and worried about that happening. Medicare will not allow them to fill a prescription for more than one month at a time. Otherwise, they would prescribe it for three months for me, but that's what the CVS specialty pharmacy that I use told me.
I hope the same does not happen with sirolimus.
MGH wants me to use the same generic all of the time but I presume if things did get desperate that they would be OK with any brand of sirolimus.
JK

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1 reply
jerrynord | @jerrynord | May 14, 2020
In reply to @contentandwell "@jerrynord That's scary. I am on sirolimus and worried about that happening. Medicare will not allow..." + (show)
@contentandwell

@jerrynord That's scary. I am on sirolimus and worried about that happening. Medicare will not allow them to fill a prescription for more than one month at a time. Otherwise, they would prescribe it for three months for me, but that's what the CVS specialty pharmacy that I use told me.
I hope the same does not happen with sirolimus.
MGH wants me to use the same generic all of the time but I presume if things did get desperate that they would be OK with any brand of sirolimus.
JK

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I found a supply if 20 capsules near me but not associated with medicare part 2. My coordinator put an order in for me but will cost me $76 for it. Meanwhile my coordinarmtor called and said he placed an order to CareMart. Supposed to be shipped out overnight. Getting to not like Medicare.

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benlam11 | @benlam11 | May 14, 2020

I have received Tacrolimus from my local CVS before (even though I now order from the Mayo Pharmacy in Rochester) the CVS must call Medicare to get approved to dispense the medication under Medicare Part B - it took mine one day. The CVS specialty pharmacy, for me, has been a disaster and I would NEVER use them again. They have several locations across the U.S. and I was passed from one to another every few days without satisfactory results.

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1 reply
Tammy | @tjgisewhite | May 15, 2020

Also try Osteen's here in Jacksonville. They are a local pharmacy and they also do home delivery. They are who does all the initial deliveries of medications to Mayo for transplant patients. They are sure to have it.

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JK | @contentandwell | May 16, 2020
In reply to @benlam11 "I have received Tacrolimus from my local CVS before (even though I now order from the..." + (show)
@benlam11

I have received Tacrolimus from my local CVS before (even though I now order from the Mayo Pharmacy in Rochester) the CVS must call Medicare to get approved to dispense the medication under Medicare Part B - it took mine one day. The CVS specialty pharmacy, for me, has been a disaster and I would NEVER use them again. They have several locations across the U.S. and I was passed from one to another every few days without satisfactory results.

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@benlam That's terrible that you have had problems with the CVS Specialty pharmacy. I have nothing but praise for the one in Boston. They call me in advance of shipping my prescription and most of the time I have them ship it to my local CVS so I don't have to be home to sign for it. Now, since I am home all of the time anyway, they are shipping it to my home. They know I want the same generic all of the time and have always abided by that. One time they did ship a different generic and when I called they rushed the correct one up here.
I have never used any other than the one in Boston, they have not passed me to other CVS pharmacies.
JK

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