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?

@2011panc

@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.

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I don't think I can really help very much as everyone has a different level dependent on how immunosuppressed your doctors wish you to be at that particular time. I actually don't know my level at the moment although I recall once being told that it was too high when i had been taking a lot of pomegranate juice.

I have bloods taken every three months although it was much more often in the early days when my tacrolimus was changed on a regular basis. Sorry I can't be of more help but, on this question, everyone is unique.

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@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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@jolinda

@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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It was my understanding pomelo’s (variation of grapefruit) and grapefruit were no no’s. Can anybody confirm?

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@rodney9999

It was my understanding pomelo’s (variation of grapefruit) and grapefruit were no no’s. Can anybody confirm?

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@rodney9999 My husband was told "no grapefruit". Which is fine by him, as he doesn't like it anyways ;))
Ginger

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I never ingest grapefruit, pomegranates, or Seville oranges. I don't like raw oysters. All of the above were on the do not eat list post transplant. ON a different note. I was told by my Transplant Pharmacy that there is a current shortage of TACROLIMUS and my insurance does not cover brand name Profraf. Any others have the same issues?

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@luckonetj

I never ingest grapefruit, pomegranates, or Seville oranges. I don't like raw oysters. All of the above were on the do not eat list post transplant. ON a different note. I was told by my Transplant Pharmacy that there is a current shortage of TACROLIMUS and my insurance does not cover brand name Profraf. Any others have the same issues?

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Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels……I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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@ca426

Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels……I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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Eek, I did not know about the shortage of Tacrolimus or that Medicare only covers immunosuppressants for 3 years. We have a Medicare Advantage plan. Hoping that helps.

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@ca426

Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels……I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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This is a very interesting discussion for me. I was told absolutely no grapefruit in any form but pomegranate was not mentioned. When my tacrolimus levels suddenly spiked, there was no obvious cause until I remembered that I had been drinking pomegranate juice. I researched this and found that some doctors in North America ( I recall Minneapolis and Nebraska universities) had found evidence of the this link. My tacrolimus went back down when I stopped the pomegranate juice

My doctors were really interested and asked me to submit a Yellow Card to NICE ( our equivalent of your FDA) which means that they will conduct further studies to see if it should be listed as a known drug reaction.

Needless to say, I never drink or eat pomegranate or grapefruit.

There is no shortage of tacrolimus here as far as I am aware. Prograf is the make of choice certainly in Edinburgh and I am not allowed to take any other brand of tacrolimus. I hope this helps.

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@wildcat

This is a very interesting discussion for me. I was told absolutely no grapefruit in any form but pomegranate was not mentioned. When my tacrolimus levels suddenly spiked, there was no obvious cause until I remembered that I had been drinking pomegranate juice. I researched this and found that some doctors in North America ( I recall Minneapolis and Nebraska universities) had found evidence of the this link. My tacrolimus went back down when I stopped the pomegranate juice

My doctors were really interested and asked me to submit a Yellow Card to NICE ( our equivalent of your FDA) which means that they will conduct further studies to see if it should be listed as a known drug reaction.

Needless to say, I never drink or eat pomegranate or grapefruit.

There is no shortage of tacrolimus here as far as I am aware. Prograf is the make of choice certainly in Edinburgh and I am not allowed to take any other brand of tacrolimus. I hope this helps.

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@wildcat I was told to avoid grapefruit and pomegranite right from the start. I also take tacrolimus (prograf) and there is no shortage here. I take 2mg a day. This is the only anti-rejection drug I take.

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@jolinda

@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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@jolinda @wildcat I was also told to not have anything with either grapefruit or pomegranate. I thought maybe I could drink seltzer with
"grapefruit essence" but they told me not even that.

@rodney999 Pomelos are basically grapefruit. Grapefruit was developed from pomelos. There is also an orange that you are not supposed to eat, I think it's Seville oranges.
JK

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@colleenyoung

Hey @jodeej, I was thinking about you tonight. We haven't heard from you in a little while. How are you doing? Did you do anything exciting (or just plain relaxing) for the holiday weekend?

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@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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@jodeej

@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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@jodeej Deep breaths. Shake it all off. Roll your shoulders. Relax as you can. We're here for you!
Ginger

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@gingerw

@jodeej Deep breaths. Shake it all off. Roll your shoulders. Relax as you can. We're here for you!
Ginger

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@gingerw thank you!
I'm so glad I started doing (almost) daily yoga at the beginning of the year. It's been a God send for me. I have to take the time everyday to breathe. My sister has mentioned more than once that she can tell a difference.

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@jodeej

@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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@jodeej I am so glad to hear from you, I was getting concerned. It sounds as if you have everything possible under control, good for you.
I sincerely hope things will improve for Tim's cognition.
It doesn't seem possible that it's been a year since Tim's transplant. I presume during the intervening year he goes locally to a transplant center for check-ups. I had still been going monthly for lab work but it has been so consistently good that I got a call last week that I can now go bi-monthly.
I really want to try yoga too but I keep putting it off but you make me want to try it even more. I'm not good at new things, I always hesitate, and I don't have anyone to go to it with. One of these days I'll take a deep breath and just go though.
Do be proud of yourself. You are doing a great job.
JK

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@jodeej

@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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@jodee
It is so very nice to hear from you!!! I'm sure you were buried in paperwork for a while, but I'm glad everything is done now and you are able to relax.

The wedding sounds like a beautiful event. I'm so glad that you love your new daughter-in-law, that is such a blessing.

So glad to have you back on Connect, we did miss you.

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