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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@jodeej I still can't believe that I didn't immediately realize the reason that they say to be consistent on whether you take the medications with or without food. I am really happy that now that I am taking them without food, even though I get up an hour early to take them, and then return to bed, I have decreased my dosage from 4 mg to 2.5. All drugs have side effects and long-term effects so I figure the less I can take the better in the long run.

I just got a new Apple watch and use the alarm to vibrate on my wrist to wake me to take my pills. That way I am not disturbing my husband. I tend to be a bit of a techno person (ex IT) so the watch is fun too.
JK

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@contentandwell

@jodeej When we went to Hawaii last year I just kept taking my medications on EST, and set my alarm for the middle of the night to take them. Now I realize that at home I was taking my immunosuppressants with food but taking them in the middle of the night I was not, which effects the level of the drugs in your system. Next time I may have to figure out a better plan. That seemed easy at the time.
JK

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you can take your pills with/with out food it doesn't matter as long as you do it the same every time, unless you get nauseated. It does not have much of effect on your levels.

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@ca426

you can take your pills with/with out food it doesn't matter as long as you do it the same every time, unless you get nauseated. It does not have much of effect on your levels.

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@ca426 I was told to take them either with or without food, but to be consistent. An online check of how to take these medications confirms that if you take them without food more is absorbed, taking them with food causes less to go into your bloodstream. So yes, you can do either, but you need to be consistent to keep the level of immunosuppressant in your system. As I said too, I was able to go from 4 mg to 2.5 when I started taking them without food. I consider that to be a rather large change. For me, the goal is to take as little medication as possible, so taking a smaller dose is appealing, over the convenience of taking them with my breakfast.

The following article explains this:
Effect of time of meal consumption on bioavailability of a single oral 5 mg tacrolimus dose.
https://www.ncbi.nlm.nih.gov/pubmed/11269569
JK

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@ca426

you can take your pills with/with out food it doesn't matter as long as you do it the same every time, unless you get nauseated. It does not have much of effect on your levels.

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I never heard this until this year about being consistent in taking meds with or without food. I was on drugs when they told me before being released post transplant so I guess that part was a little fuzzy. Glad to know now so I can take the best possible care of myself. Anyone else wish we could retake those classes to see if we missed anything on the first go-round?

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@jolinda

I never heard this until this year about being consistent in taking meds with or without food. I was on drugs when they told me before being released post transplant so I guess that part was a little fuzzy. Glad to know now so I can take the best possible care of myself. Anyone else wish we could retake those classes to see if we missed anything on the first go-round?

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@jolinda They came in to go over everything in the book with me so I could ask questions and I kept falling asleep! It's a good thing it was all written down too. My husband was getting so upset with me but I just could not keep my eyes open.
There are definitely things that are not in enough detail in the book that would have been good to hear. Unfortunately, although my husband was awake but he didn't remember much either.
I really don't think they emphasized that if you take the medication without food you would not need to take as large a dose of it. It seems to me, from the last time I mentioned this on this forum, that others didn't realize this either. It makes sense though, why else would they say to take it either way but to be consistent?
JK

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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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@jodeej

We are only driving a few hours from home and staying in our timezone. It's a good "training" trip! Lol

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Jodee, You are going to have a wonderful trip! First adventure with hubby's new liver. First of many!!
I think that you will both be overwhelmed (in a good way) at the new freedom of worrying and waiting for the phone call! I am very happy for you. Send us a picture when you get home:-)

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@jodeej

We are only driving a few hours from home and staying in our timezone. It's a good "training" trip! Lol

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@jodeej Our first "trip" after hubby's kidney transplant was 7 weeks post transplant. We love camping, and took the little trailer down to a campground about 30 miles from transplant center. We had an appt there early on day before Thanksgiving. Went down on Tuesday, got set up. Went to appt, then spent the day wandering in a small town about another hour away. When it came time for meds for the evening, he realized he had forgotten them at home. He hadn't set them up before leaving since they were still tweaking doses. So, at 7pm on night before Tgiving, we loaded back up, joined the holiday traffic and got home a few hrs off schedule for meds. We laugh about it now, but he really learned his lesson that day!
Ginger

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@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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@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, @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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