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Liver transplant - Let's support each other
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?
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I’m glad you had nothing serious going on Rosemary!
I have Sjogren’s Syndrome, which is causing peripheral neuropathy and pain. I was told by a rheumatology PA I could consider taking hydroxychloroquine. I informed him I had already looked into it as a potential treatment. However, it has a major interaction with Tacrolimus. To which he responded, “so does Mycophenolate, so it would be okay.”
To which I stated, yes, technically, it does. However, that’s the point of taking them together, as that’s how they work to keep our bodies from developing antibodies that may cause us to reject our transplanted organ(s). And, it’s critical that we do not take anything that may interfere with this process.
Needless to say, since I hadn’t received any real help from him anyway, I stopped seeing him.
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3 ReactionsI was told by the transplant doctors to only use Tylenol, nothing else.
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1 ReactionI can't say that it has happened to me. I've been incredibly lucky so far and have had a very close relationship with my post-transplant nurse practitionerat Mayo, so the one time I had a temperature, she was right on top of it. Her advice, I trust implicitly.
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1 ReactionTylenol and over the counter medicines for transplant recipients is something that many of my nontransplant friends do not understand. Although they have the best intentions, they have occasionally given me unsolicited advice. Has that ever happened to you? I am extremely thankful for this Mayo Connect online Community where we can openly share, support, learn together while always adhering to the advice of our own transplant team.
@marilynwhitlock, I am so glad that you brought up the question about Tylenol to the attention of this group! I don't know how long ago you had your transplant, but you are absolutely correct to ask questions when there is any doubt or uncertainty.
I had a recent experience that I want to share because it relates to this topic. 2 weeks ago, on a Sunday morning I went to my local ER due to a quickly rising temperature and intense shivering. . Since I was a transplant recipient, I was immediately tended to (I had called in advance, and surprisingly the ER was not busy at 6AM) I was given IV Tylenol to bring down 103 fever, and had all kinds of lab tests that all came back negative according to the doctor. When the discharge nurse removing the IV and getting me ready for discharge, she told me that I could continue to take Tylenol, or - Motrim (for some leg soreness from previous day yardwork). She acted surprised when I said no to the Motrim, I did not consider her to be qualified to tell me that, plus I did not need it.
@kathycaudle, @jerrynord, @silverwoman,@marilynwhitlock @ronromo - Has anything like that ever happened to you when being seen by a nontransplant health provider? How did you respond?
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3 ReactionsI was told only Tylenol and up to 2000 mg./day.
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1 ReactionI agree with Rosemary. I was told only Tylenol. How often you can take it per day I don't remember.
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2 ReactionsYes, Thank you!
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2 ReactionsHi...I received my liver transplant 11/10/19 and was told to take tylenol only...hope this helps🤗
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1 Reaction@marilynwhitlock, Hi Marilyn and welcome to Connect.
My post transplant takehome notebook says that we, transplant recipients can take Tylenol.
It also says that we should NOT take aspirin or other pain relivers (Advil, Aleve, Ibuprofen, Motrim, Excedrine, etc) - UNLESS your transplant physician ordered it.
Remember to read and observe the allowed dosage on the package. Don't exceed the maximum.
I hope this helps.
Is this a sudden or a chronic pain?
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4 ReactionsI cant remember, for liver transplant patients, which is better to take when need for back pain? Ibuprofen or Tylenol ?
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2 Reactions