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.

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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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

REPLY
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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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
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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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,

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?

REPLY
1 reply
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
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,

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 8, 2020
In reply to @xplantsister "@rosemaya, no one is allowed in the hospital due to Covid19. I talk with him and..." + (show)
@xplantsister

@rosemaya, no one is allowed in the hospital due to Covid19. I talk with him and his medical professionals several times a day. He was resting comfortably last time I spoke with him. They are looking at his kidney and bone marrow function, high creatinine and low WBCs and RBCs. Could be related to his medications. The MDs are adjusting meds and keeping an eye on him. Thank you for your kind wishes.

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@xplantsister, I did not even think of the no visitor policy. Sorry that I mentioned you being there with him. I am happy to hear that he is resting comfortably and that the doctors are looking into all possibilities.
Where did he get his transplant? I got mine at Mayo Rochester,

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