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?

@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.

REPLY

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.

REPLY
@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.

Jump to this post

Very useful information…thank you.

REPLY
@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.

Jump to this post

@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.

REPLY
@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

REPLY

@rodney999 I did have quite a problem with my magnesium levels post transplant (Nov 28 2018). They had me drink strong magnesium solutions twice a day and they were awful. Since then I've been taking magnesium supplements (pill form).
No idea what caused it but I seem to be levelling off now.

REPLY
@gaylea1

@rodney999 I did have quite a problem with my magnesium levels post transplant (Nov 28 2018). They had me drink strong magnesium solutions twice a day and they were awful. Since then I've been taking magnesium supplements (pill form).
No idea what caused it but I seem to be levelling off now.

Jump to this post

Hi, @gaylea1. I am so happy to see your reply! I hope and pray that by leveling off, you mean that you are feeling better.
Have you had to undergo any more ERCP's?

REPLY
@rosemarya

Hi, @gaylea1. I am so happy to see your reply! I hope and pray that by leveling off, you mean that you are feeling better.
Have you had to undergo any more ERCP's?

Jump to this post

It's been slow but I'm only 5 months in. I have an ERCP scheduled for tomorrow morning. My white blood cell count plummeted so they took me off cellcept and prednisone. I'm on 2mg tacrolimus daily. I really hope after tomorrow I start to feel better. Seems like it's taking forever lol.

REPLY
@gaylea1

It's been slow but I'm only 5 months in. I have an ERCP scheduled for tomorrow morning. My white blood cell count plummeted so they took me off cellcept and prednisone. I'm on 2mg tacrolimus daily. I really hope after tomorrow I start to feel better. Seems like it's taking forever lol.

Jump to this post

Keep the faith..you are making progress..easy for me to say…you are a hero to many of us.

REPLY
@gaylea1

It's been slow but I'm only 5 months in. I have an ERCP scheduled for tomorrow morning. My white blood cell count plummeted so they took me off cellcept and prednisone. I'm on 2mg tacrolimus daily. I really hope after tomorrow I start to feel better. Seems like it's taking forever lol.

Jump to this post

@gaylea1
I know that one of these days they are going to find the right combination of meds and treatment for you. And then we will celebrate, all of us together doing a virtual happy dance.
I'm sending prayers for you and your doctors. And a gentle hug to you.
Send a note when you are feelong up to it, and let me know how you are doing.

REPLY
@gaylea1

It's been slow but I'm only 5 months in. I have an ERCP scheduled for tomorrow morning. My white blood cell count plummeted so they took me off cellcept and prednisone. I'm on 2mg tacrolimus daily. I really hope after tomorrow I start to feel better. Seems like it's taking forever lol.

Jump to this post

@gaylea1 Since each person is so different, it seems the journey is unique for each one. I join in, in wishing you a speedy remedy to the right combination of meds, and to feeling better soon. Gentle cyber hugs, and your place at the table is waiting for you!
Ginger

REPLY

Hi

I am from Scotland and I had my liver transplant five years ago. My first year was quite tough as I seemed to react badly to many of my meds but now, five years on, I am fit and healthy. I am on only 0.5 mg Prograf ( tacrolimus) twice a day and take nothing else except Adcal for my Vitamin D. Some doctors have been surprised that I am on so few meds but I am very well and my liver results are excellent. I've been 'stable' on these meds for four years now and I've never had a rejection episode.

So, take heart, it is difficult in the beginning but your team will eventually find the right combination of meds for you.

May I also say 'thank you' to the Mayo Clinic for providing this very welcome forum for transplant patients. I was a student in St Paul many years ago and I have used your Mayo Clinic website for many years.When I got sick, it was invaluable. The transplant experience is very different here, not least because I didn't have any financial worries at all but we share many common problems and it's always good to talk….

REPLY
@wildcat

Hi

I am from Scotland and I had my liver transplant five years ago. My first year was quite tough as I seemed to react badly to many of my meds but now, five years on, I am fit and healthy. I am on only 0.5 mg Prograf ( tacrolimus) twice a day and take nothing else except Adcal for my Vitamin D. Some doctors have been surprised that I am on so few meds but I am very well and my liver results are excellent. I've been 'stable' on these meds for four years now and I've never had a rejection episode.

So, take heart, it is difficult in the beginning but your team will eventually find the right combination of meds for you.

May I also say 'thank you' to the Mayo Clinic for providing this very welcome forum for transplant patients. I was a student in St Paul many years ago and I have used your Mayo Clinic website for many years.When I got sick, it was invaluable. The transplant experience is very different here, not least because I didn't have any financial worries at all but we share many common problems and it's always good to talk….

Jump to this post

@wildcat, Please accept my sincere welcome to Mayo Connect. Mayo Connect exists so that patients like you, me, and all of our members can share their own health experiences as a way to help others. We are all in this transplant journey together. Like you have so well expressed, "…we share many common problems and it's always good to talk…"

Before your transplant, when you were sick, what did you find to be most helpful to you, on the Mayo Clinic website? When did you find Mayo Connect?

REPLY

Thank you for your warm welcome, Rosemary.

I was an exchange student at Macalester College,St Paul in the late 1970's when I first heard about the Mayo Clinic. One of my fellow students hoped to train there and he often sang its praises.

Many years later, and with the growth of the internet, I often found myself looking at your website for information on the usual ailments that beset us as we get older and, although most doctors then were reluctant to encourage patients to seek help on the interenet, the Mayo Clinic was always respected.

It was invaluable when my liver failed and in the weeks before and after my transplant and it remains one of my first resources for information.

I came across Mayo Connect quite by accident when I was looking at another part of the Mayo Clinic website.Some hospitals in the UK have patient groups but mine (Edinburgh) has only a Facebook page. I think Mayo Connect is wonderful especially as it allows people like me to re-assure others who are facing the same problems. I am very happy to answer any questions other members may have regarding my experiences here in the UK.

REPLY
@wildcat

Hi

I am from Scotland and I had my liver transplant five years ago. My first year was quite tough as I seemed to react badly to many of my meds but now, five years on, I am fit and healthy. I am on only 0.5 mg Prograf ( tacrolimus) twice a day and take nothing else except Adcal for my Vitamin D. Some doctors have been surprised that I am on so few meds but I am very well and my liver results are excellent. I've been 'stable' on these meds for four years now and I've never had a rejection episode.

So, take heart, it is difficult in the beginning but your team will eventually find the right combination of meds for you.

May I also say 'thank you' to the Mayo Clinic for providing this very welcome forum for transplant patients. I was a student in St Paul many years ago and I have used your Mayo Clinic website for many years.When I got sick, it was invaluable. The transplant experience is very different here, not least because I didn't have any financial worries at all but we share many common problems and it's always good to talk….

Jump to this post

@wildcat I am glad to see that you are doing well and have been stable for some time. Thank you for sharing. My interest was tweaked when you said that you are on only 0.5 mg tacrolimus twice daily for immunosuppressants. I have a series of questions regarding your tacrolimus medication: 1) do you have regular blood levels run? 2) what is the range your physicians want you to maintain? 3) what is your level? and 4) does your level deviate or is it stable? I am in the USA and have a pancreas transplant and am currently going through changes in my tacrolimus dosages and levels. Thank you for whatever you are willing to share.

REPLY
Please login or register to post a reply.