Liver Transplant: Questions about heart burn and digestive issues

Posted by ltek128 @ltek128, Sep 6 9:16am

Hi I am a newly transplanted liver patient. I received my transplant on 6/3/2022. I have a couple of questions for the group. I know I can always reach out to my transplant coordinator and she has been more than great to me but sometimes I feel like such an annoyance !
I have had diarrhea almost every morning after my AM meds but within the last few weeks I’ve been getting cramps along with the diarrhea every morning ? I know it’s common but I don’t know if I should point that out to them. The other thing is that I’ve recently started getting terrible heartburn pretty much all day. I’m on protonix but started adding TUMS ?
It offers a slight relief but nothing long term.

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Hello! First congrats on your transplant! Second, you should never worry about reaching out to your coordinator about anything, that is what they are there for for sure. You definitely want to let them know about any reactions you have to meds regardless of what it is, and diarrhea is absolutely one of them. As far as the heartburn goes, I can empathize with you 100%. I have found that Protonix did absolutely nothing for me in terms of heartburn relief so they were fine letting me take Omeprazole, aka Prilosec. For me it works much better. Just make sure you run it by them first, along with ANYTHING else you take before taking it. That includes TUMS. In fact in some cases they will tell you NOT to take TUMS, or any other antacid that is similar. Write your coordinator soon to check on these things and I guarantee you she’ll have you on track quick and you will be good to go! My rule, as it is for many, is that NOTHING goes in my mouth unless it is approved by them.

Incidentally, I was originally transplanted in early May, but due to an unforeseen biliary issue with the liver I just went through my second transplant about 10 days ago. Since I’m on round two it has absolutely affirmed my belief that the Mayo crew are there for us, in anyway we need them. Use them whenever you have access to them, they have critical knowledge to help keep you going!!

Again, congrats and here is to your great health. I hope to hear back on your progress, hang in there!!

Bryan

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You must be diligent about calling your coordinator w/symptoms such as u r having. It is so easy for u to end up back in the hospital.
Congratulations on your LT wish u nothing but the best to u and Bryan💚
I myself am almost 2years!
Keep us posted w/your progress.

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So I contacted my transplant coordinator she told me to cut the cellcept dose
Hopefully that will help !
Thank you 💚

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I just wanted to add that sometimes I feel as if my team is sort of done with me . It could be just me but seems now they are quick to tell me to follow up with my pcp ?
Anyone else feel like this ?

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I can relate to u, I had similar situation. I had to come off celcept and switch to myfortic.
You are on your LT journey, lots of peaks and valleys but it is all worth it.
😊😊

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What! My surgeon followed me for 6 months and then transferred me to my liver doc. whom still follows me to this day. I have bloods draw once a month to make sure meds are working and see them every 6 months, I am almost 2yrs. LT.
The only time I need my pcp is if it not related to my liver. You are only 3 months so u should be seeing your LT doc every 3months and blood once month or more. Are u on prograf to.

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@myfablife

What! My surgeon followed me for 6 months and then transferred me to my liver doc. whom still follows me to this day. I have bloods draw once a month to make sure meds are working and see them every 6 months, I am almost 2yrs. LT.
The only time I need my pcp is if it not related to my liver. You are only 3 months so u should be seeing your LT doc every 3months and blood once month or more. Are u on prograf to.

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Yes I’m on prograf
I saw the surgeon last on 8/17 and he referred me to a plastic surgeon because the incision healed badly
I had an infection at the incision site along with a seroma
But I have no further follow ups with the surgeon ?

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Wow, they must do things different at Mayo! I am sorry to hear that about your incision.
Are you getting blood test on a regular bases, I’m sure u must still be on a lot of meds still.. 3 mths. Post LT is still very early.

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@myfablife

Wow, they must do things different at Mayo! I am sorry to hear that about your incision.
Are you getting blood test on a regular bases, I’m sure u must still be on a lot of meds still.. 3 mths. Post LT is still very early.

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I had my transplant at Mt Sinai in New York

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Gotcha, should never assume😊
Good luck on your LT journey. Hope all goes well w/the surgeon visit to.

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@ltek128

I just wanted to add that sometimes I feel as if my team is sort of done with me . It could be just me but seems now they are quick to tell me to follow up with my pcp ?
Anyone else feel like this ?

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Hi, @Itek128
My transplant center keeps the patient with the transplant team forever I think. I will be six years post-transplant this month and they are still who I turn to. They do only handle anything that is directly related to my transplant though but they are very responsive. I always check with them before I begin a new prescription that a different doctor has prescribed and for occasional other things.

I think they just feel that transplant is their specialty and that the other areas are better handled by the doctors who deal with those issues on a regular basis. They may also feel (this is just my own thought) that they don't want to step on the toes of my other doctors.

Your "name" makes me wonder if you were in the tech industry in a company off of Route 128. Were you? I ask because that's sort of my area also, although I do live in southern NH.
JK

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@contentandwell

Hi, @Itek128
My transplant center keeps the patient with the transplant team forever I think. I will be six years post-transplant this month and they are still who I turn to. They do only handle anything that is directly related to my transplant though but they are very responsive. I always check with them before I begin a new prescription that a different doctor has prescribed and for occasional other things.

I think they just feel that transplant is their specialty and that the other areas are better handled by the doctors who deal with those issues on a regular basis. They may also feel (this is just my own thought) that they don't want to step on the toes of my other doctors.

Your "name" makes me wonder if you were in the tech industry in a company off of Route 128. Were you? I ask because that's sort of my area also, although I do live in southern NH.
JK

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No to the name 😉

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