1. < Transplants
Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

JK | @contentandwell | May 29, 2019
In reply to @jeanne5009 "Not ignoring you...had heart catherizatuon all good. 2days later I fell on the hospital side walk..." + (show)
@jeanne5009

Not ignoring you...had heart catherizatuon all good. 2days later I fell on the hospital side walk and broke 3 bones in my hand and wrist my elbow and rib. How convenient it was at the emergency room entrance! Lol you cant make it up! Wont be texting much but please know I am reading everything and thinking of all of you...

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@jeanne5009 Oh my! I'm happy that the heart catheterization went well, and how considerate and convenient of you to have your accident right there! I hope you are not too uncomfortable, just take it easy and read. Too bad you can't dictate to the forum.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 30, 2019
In reply to @jeanne5009 "Not ignoring you...had heart catherizatuon all good. 2days later I fell on the hospital side walk..." + (show)
@jeanne5009

Not ignoring you...had heart catherizatuon all good. 2days later I fell on the hospital side walk and broke 3 bones in my hand and wrist my elbow and rib. How convenient it was at the emergency room entrance! Lol you cant make it up! Wont be texting much but please know I am reading everything and thinking of all of you...

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Love, prayers and a virtual hug are on the way.
Rosemary

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rodney9999 | @rodney9999 | May 31, 2019

Anybody experiencing low magnesium levels post transplant? Possibly PPI medication protonix, which I am currently on, drives down the level?

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2 replies
@tbirdmunchkin | @glinda | May 31, 2019
In reply to @rodney9999 "Anybody experiencing low magnesium levels post transplant? Possibly PPI medication protonix, which I am currently on,..." + (show)
@rodney9999

Anybody experiencing low magnesium levels post transplant? Possibly PPI medication protonix, which I am currently on, drives down the level?

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Hi Rodney,
I'm Glinda and I am a heart transplant patient 8 years and 5 months post transplant and I have had to take magnesium since my transplant and I also take protonix

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1 reply
luckonetj | @luckonetj | May 31, 2019
In reply to @glinda "Hi Rodney, I'm Glinda and I am a heart transplant patient 8 years and 5 months..." + (show)
@glinda

Hi Rodney,
I'm Glinda and I am a heart transplant patient 8 years and 5 months post transplant and I have had to take magnesium since my transplant and I also take protonix

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I was taken off protonix when I no longer needed nystatin. I do tja magnesium. 400 mil twice a day. I read that Profraf depletes magnesium.

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jolinda | @jolinda | May 31, 2019

@rodney9999 I was put on a Protein Pump Inhibiter as a protocol medication post transplant to prevent acid reflux and heartburn symptoms. I was told the lack of stomach acid can then produce lower GI concerns so then was given Senna to prevent those problems. I did not experience heartburn or acid reflux so I started researching the medication prescribed and discovered that there was a 20mg version rather than the 40mg version prescribed, so I called the pharmacy and asked if they could work with the doctor to change the dose. Once on 20mg I still didn't have acid reflux or heartburn so I asked at my next visit if I could remove the medication and my doctor agreed. As soon as I stopped the Protein Pump Inhibitor (PPI) meds I also was able to stop using Senna for the GI side effects. If you are symptom free check with your team to see if you can change things up. I have found that doctors are very receptive to trying things out if you present a compelling case for yourself. Good luck.

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1 reply
luckonetj | @luckonetj | May 31, 2019

Fyi- I looked up what all the meds were for and then requested to be taken off when appropriate. I am down from 10 meds to three meds in 11 months. URSO, PROGRAF AND MAGNISIUM OXIDE. THATS IT.

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rodney9999 | @rodney9999 | May 31, 2019
In reply to @jolinda "@Rodney9999 I was put on a Protein Pump Inhibiter as a protocol medication post transplant to..." + (show)
@jolinda

@rodney9999 I was put on a Protein Pump Inhibiter as a protocol medication post transplant to prevent acid reflux and heartburn symptoms. I was told the lack of stomach acid can then produce lower GI concerns so then was given Senna to prevent those problems. I did not experience heartburn or acid reflux so I started researching the medication prescribed and discovered that there was a 20mg version rather than the 40mg version prescribed, so I called the pharmacy and asked if they could work with the doctor to change the dose. Once on 20mg I still didn't have acid reflux or heartburn so I asked at my next visit if I could remove the medication and my doctor agreed. As soon as I stopped the Protein Pump Inhibitor (PPI) meds I also was able to stop using Senna for the GI side effects. If you are symptom free check with your team to see if you can change things up. I have found that doctors are very receptive to trying things out if you present a compelling case for yourself. Good luck.

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Very useful information...thank you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 31, 2019
In reply to @charicen "I usually schedule my annual checkups in November/December depending on who is in the Transplant Clinic..." + (show)
@charicen

I usually schedule my annual checkups in November/December depending on who is in the Transplant Clinic at the time. I have a strong preference as to who I will work with by this time since I have been around there for over 20 years now. I schedule the two together so that I only have to make one trip and also save on the cost for insurance purposes. There is no sense in wasting time or insurance money repeating tests that both transplant followups order. I am all about being a cost effective person when it comes to those resources.

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@charicen, I also have a liver and a kidney transplant. However they were transplanted at the same time, and from the same donor (simultaneous liver and kidney transplant). So I naturally have both evaluations at the same appointment. I am happy that you can do both evaluations at the same time. I think that a lot of the tests overlap anyway.

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JK | @contentandwell | May 31, 2019
In reply to @rodney9999 "Anybody experiencing low magnesium levels post transplant? Possibly PPI medication protonix, which I am currently on,..." + (show)
@rodney9999

Anybody experiencing low magnesium levels post transplant? Possibly PPI medication protonix, which I am currently on, drives down the level?

Jump to this post

@rodney9999 I have had no problem with magnesium at all. I had been on magnesium prior to transplant but am not now. I take sirolimus and prednisone (small dose).
JK

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