1. < Transplants

Your best traveling tips

Posted by jodeej @jodeej, Sep 21, 2018

My husband had his transplant July 7. We are doing a weekend getaway next weekend and I'm just wondering what things I need to remember besides not eating the hotel free hot breakfast and bring the sunscreen.
Thank you,
JoDee

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JK | @contentandwell | Sep 25, 2018
In reply to @rosemarya "Taking care of ourselves and being proactive is always the best way to go - and..." + (show)
@rosemarya

Taking care of ourselves and being proactive is always the best way to go - and ALWAYS working with our medical provider - especially as transplant patients Thank you for stressing the importance of this:-)

We are on many different medications for a variety of complex issues related to our own organ(s) and individual needs. Now you have me thinking about this! I will definitely bring this up at my next appointment.
Since this conversation has specifically mentioned the drug Tacrolimus, here is what I found:.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/proper-use/drg-20068314

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@rosemarya If you do mention it and find out that these medications do not have negative long-term effects I would be very interested in hearing that. I just did some googling and although I know I saw some negatives about being on them for a long time (for us, forever) I couldn't find that now. Frankly, if there are no long-term negative effects I will go back to taking it with food, that would be way easier. The only short-term effects I have had are the same with both doses, but that makes sense because the higher dose does not get metabolized into your system as much.

I did not see any mention on the Mayo link that you provided about long-term effects at all.

I have had a number of messages to the first line of communication recently so I don't want to ask her this, plus, although I think she is very intelligent, I don't think she is really good at this! I probably mentioned before, after I started taking it without food and being able to decrease my dose I mentioned something to her about the effect of taking it with food vs without. She said that was not the reason that the number changed. She intercepts all of the portal messages so she would be the one who would respond.
JK

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1 reply
JK | @contentandwell | Sep 25, 2018
In reply to @keggebraaten "@jodeej and everyone, Thanks for the travel question and for your excellent feedback about travel after..." + (show)
@keggebraaten

@jodeej and everyone,
Thanks for the travel question and for your excellent feedback about travel after transplant. It seems like you have covered most all of the best tips. We asked our Mayo Clinic nurses and they echoed what you all have said about handwashing, masks, sunscreen, etc. They had some additional thoughts like making sure you bring extra medication in case of travel delays, and always pack your medication in your carry-on bag, not in your checked bag. They also recommended, if you have access to one, going to a Travel Clinic before traveling outside the U.S. so you can get the proper information on vaccines and safety measures in foreign countries. One final thought – has anyone visited the CDC website before traveling? On the CDC Travel website, you can select your destination and click the box for “immune-compromised traveler”. They provide recommendations for any travel location. You can find that website here: https://wwwnc.cdc.gov/travel. Happy and safe travels to everyone!

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@keggebraaten At MGH there is a doctor whose role is to field that. If you are going away you should check with her first about anything you need to know, such as immunizations.
She has a very good NP but when I called and asked him about possibly going to Bermuda (we didn't go) he asked where Bermuda was! Then he said, of course, we would need immunizations. Obviously Bermuda is not a place he is well versed on, which was surprising because he is very good overall.
Thanks for that website too. That's a great one to have on hand.
JK

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JK | @contentandwell | Sep 25, 2018
In reply to @keggebraaten "@rosemarya, @contentandwell, @jodeej, @jolinda, @ca426 and others, Medication discussions can offer great advice to everyone, but..." + (show)
@keggebraaten

@rosemarya, @contentandwell, @jodeej, @jolinda, @ca426 and others,
Medication discussions can offer great advice to everyone, but we always suggest that anyone, regardless of the medication type, check with the team who is caring for you for recommendations on how and when to take your medication before you make any alterations to your meds. Our nurses say that most medication is better tolerated with food. Mayo Clinic doesn’t offer a preference for taking immunosuppression medications with or without food in general, but we do recommend that patients be consistent, because switching back and forth between with and without food can change the absorption of the medications, particularly of tacrolimus. Again, please don’t make any changes to your medication routines without first checking with your personal transplant team.

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@keggebraaten and all, Absolutely do not make changes before checking with your transplant team. I told them first that I wanted to start taking it without food and for the next few weeks they had me going for my lab work weekly to make sure things were where they should be.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 25, 2018
In reply to @contentandwell "@rosemarya If you do mention it and find out that these medications do not have negative..." + (show)
@contentandwell

@rosemarya If you do mention it and find out that these medications do not have negative long-term effects I would be very interested in hearing that. I just did some googling and although I know I saw some negatives about being on them for a long time (for us, forever) I couldn't find that now. Frankly, if there are no long-term negative effects I will go back to taking it with food, that would be way easier. The only short-term effects I have had are the same with both doses, but that makes sense because the higher dose does not get metabolized into your system as much.

I did not see any mention on the Mayo link that you provided about long-term effects at all.

I have had a number of messages to the first line of communication recently so I don't want to ask her this, plus, although I think she is very intelligent, I don't think she is really good at this! I probably mentioned before, after I started taking it without food and being able to decrease my dose I mentioned something to her about the effect of taking it with food vs without. She said that was not the reason that the number changed. She intercepts all of the portal messages so she would be the one who would respond.
JK

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Good point, JK.
With any medication there is a balance benefit vs risk. The long term success of our transplanted organs vs the risks you mention. I am of the belief that this is the reason for the continuous monitoring by our transplant team of our blood and medication levels. And also the emphasis on keeping up with our vaccines, sun protection, and routine health screenings, etc.

Recently @keggebraaten posted a new blog post https://mayocl.in/2NTf2bO with articles to remind us how to take care of ourselves. I want to encourage everyone to take advantage of the blog posts and to add your own thoughts and questions.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 25, 2018

Are all of you travelers ready to stay home tonight for the Ken Burns Documentary about Mayo Clinic?
https://connect.mayoclinic.org/discussion/new-ken-burns-film-the-mayo-clinic-faith-hope-science/

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2 replies
jodeej | @jodeej | Sep 25, 2018

@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the ice machine?

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 25, 2018
In reply to @jodeej "@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the..." + (show)
@jodeej

@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the ice machine?

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I avoid ice machines. I would rather chill a drink in refrigerator.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 25, 2018
In reply to @jodeej "@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the..." + (show)
@jodeej

@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the ice machine?

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@jodeej Nope, no ice from the machines. Chilled in a fridge. We take a cooler sometimes, and I make bags of ice to go with us, that will last the first couple of days. Chill down liquids and the glass, and you may not need ice!
Ginger

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