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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.

Profile picture for benlam11
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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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)
Profile picture for JK @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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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)
Profile picture for jerrynord @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

REPLY
1 reply
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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 13, 2020
In reply to @jerrynord "Haven't tried the Portal yet." + (show)
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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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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)
Profile picture for jeanne5009 @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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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)
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@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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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)
Profile picture for jerrynord @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

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
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Tammy | @tjgisewhite | May 13, 2020

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

REPLY
1 reply
Profile picture for jerrynord
jerrynord | @jerrynord | May 13, 2020

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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