1. < Transplants

Liver Transplant: Questions about heart burn and digestive issues

Posted by ltek128 @ltek128, Sep 6, 2022

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.

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

JK | @contentandwell | Sep 10, 2022
In reply to @ltek128 "I just wanted to add that sometimes I feel as if my team is sort of..." + (show)
@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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1 reply
ltek128 | @ltek128 | Sep 10, 2022
In reply to @contentandwell "Hi, @Itek128 My transplant center keeps the patient with the transplant team forever I think. I..." + (show)
@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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myfablife | @myfablife | Sep 11, 2022

Hi,
My TP team is the same also. I am almost 2years LT I still have blood work once a month also.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 18, 2022

@ltek128, I want to Welcome you to Connect and to Congratulate you on your recent liver transplant. And I sincerely apologize if I have already done so. I have been traveling and I think that my mind is still playing 'catch up' as I am trying to rea thru the Transplant Discussion posts.
I have had my transplant longer than you, and I want to emphasize to you, and to ALL patients with a recent transplant, that you are NOT bothering your coordinator with your questions.

Cramps and diarrhea can be a normal condition for most people. However for a transplant patient, it is not something to take lightly. It could require a simple medication adjustment that your team will need to oversee. Please do not add any over-the-counter meds or remedies unless you get approval from your team. The 'harmless' over-the-counter remedies that our normal friends/family take are not for us anymore.

I see that your original post was Sept. 6. Have you contacted tour coordinator? How are you doing now?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 18, 2022
In reply to @btg "Hello! First congrats on your transplant! Second, you should never worry about reaching out to your..." + (show)
@btg

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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@btg, Bryan, I just read that you have received a new liver transplant. I do hope that you are experiencing a complete and comfortable recovery. I can't imaging going for a 2nd transplant procedure, and I agree that the transplant teams at Mayo are the absolute best! My coordinators (My 1st one retired) have always been my first source of information. Even my PCP has told me to check with her if there is any uncertainty of his recommended treatment for a minor issue.

Bryan, how is recovery going? How are you feeling?

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1 reply
btg | @btg | Sep 18, 2022
In reply to @rosemarya "@btg, Bryan, I just read that you have received a new liver transplant. I do hope..." + (show)
@rosemarya

@btg, Bryan, I just read that you have received a new liver transplant. I do hope that you are experiencing a complete and comfortable recovery. I can't imaging going for a 2nd transplant procedure, and I agree that the transplant teams at Mayo are the absolute best! My coordinators (My 1st one retired) have always been my first source of information. Even my PCP has told me to check with her if there is any uncertainty of his recommended treatment for a minor issue.

Bryan, how is recovery going? How are you feeling?

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Hi Rosemary! It’s been a while since we chatted (my first transplant!), so thanks for reaching out.

I am day 21 post op and this time everything is looking really good. After five months of living in Arizona we may actually be headed home to California within a couple of weeks if things continue the way they are. My lab numbers have never looked as good as they do now so we are very hopeful.

Yes, having to go through it a second time was definitely not my preferred choice, but due to an unseen biliary issue with the first transplant it was absolutely necessary. I am incredibly thankful to the Mayo crew for tackling this thing early on as it could have had an outcome that was less than desirable! They applied for and I received a MELD exception due to the condition of the liver, and my condition which thankfully sped up the process. I was blessed with a new liver much younger than me so I am expecting to feel like a twenty something year old again any day!

I think one thing we can all agree on is that our Mayo transplant teams are amazing. I have nothing but great things to say about them, and I feel incredibly blessed every day that I was fortunate enough to land in their care.

I hope all is well in your world as also! Take care, be safe and again thanks for reaching out.

Bryan

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 24, 2022
In reply to @btg "Hi Rosemary! It’s been a while since we chatted (my first transplant!), so thanks for reaching..." + (show)
@btg

Hi Rosemary! It’s been a while since we chatted (my first transplant!), so thanks for reaching out.

I am day 21 post op and this time everything is looking really good. After five months of living in Arizona we may actually be headed home to California within a couple of weeks if things continue the way they are. My lab numbers have never looked as good as they do now so we are very hopeful.

Yes, having to go through it a second time was definitely not my preferred choice, but due to an unseen biliary issue with the first transplant it was absolutely necessary. I am incredibly thankful to the Mayo crew for tackling this thing early on as it could have had an outcome that was less than desirable! They applied for and I received a MELD exception due to the condition of the liver, and my condition which thankfully sped up the process. I was blessed with a new liver much younger than me so I am expecting to feel like a twenty something year old again any day!

I think one thing we can all agree on is that our Mayo transplant teams are amazing. I have nothing but great things to say about them, and I feel incredibly blessed every day that I was fortunate enough to land in their care.

I hope all is well in your world as also! Take care, be safe and again thanks for reaching out.

Bryan

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@btg - Bryan, I hope that you have been able to return home, or are getting closer to that special day! I was at Mayo Rochester for 11 weeks during my transplant experience in 2009. To this day, I can remember how wonderful it felt as my husband drove into our home town after an 800 mile drive. I held back tears because it was in May and I wanted to see the flowers and trees that were always my favorites. And then...to sleep in my own bed!!!
I am doing well. Hubby and I have recently returned home from a trip to Crater Lake in Oregon. Today will be with our sons and families for the afternoon.
I am forever blessed by the generosity of my donor, and by the excellent care that I received at the Mayo Clinic.
When you are settled, I want to hear more from you about your new life.

Bryan - after I posted this, I realized that this discussion is about heart burn and digestive issues. Did you have heartburn or digestive issues prior to transplant? Have they been remedied?

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