traveling + eating post transplant?

[kittencaitlin]

Hi all,

I am trying to spend my time pre-tx letting myself think about all that I would like to do post-transplant. And one of those things is travel. I'd love to hear stories about how you all have dealt with food safety while traveling, particularly in europe or out of the states anywhere.

I am totally aware of all the guidelines after transplant, so mostly im just looking for first hand accounts of how you actually make it work. For instance if you're in another country at a restaurant where you don't speak the language, or speak very little, do you play it safe and order little to nothing, unless you are positive it is ok? Or do you try to get your condition across to the waiter -- explaining for example about avoiding pastuerized cheese, asking questions, etc. I am thinking along the lines of...what if i wanted to eat pasta in italy with cooked tomato sauce and cheese, would i need to worry about the cheese? Things like that, the details that you wont find on basic guidelines....and personal stories.

Also wondering how often, if at all, you got sick from food while traveling.

I definitely tend towards being overly paranoid so if anything I'd like to know what I actually can do instead of just can't so I don't end up eating nothing! And mostly this is just a fun way for me to also think about travel.

Best,

Caitlin

 

[daniela.l]

hello,
i just had my two month follow up after transplant and i know how you feel! i am eager to go to many places, but i can't get too excited. i'm not sure about your doctors' guidelines, but i am required to wait for my doctor's approval to travel. supposedly it's 6 months, but I can't even go to campus to take one class over the summer, so i would think traveling is definitely out of the question. just make sure your doctor is certain that you are ready to travel and be patient! best wishes and i hope you get your lungs soon!

daniela
catchingyourbreaths.wordpress.com

 

[kittencaitlin]

hi daniela, congrats on having your tx!! i hope youre feeling great. i cant wait to be in your shoes
wow , may i ask where you were transplanted? i am surprised that you are not able to go to campus over the summer to take classes. is your campus nearby? I hear so many different things from people at different centers with regards to what their doctors "advise"...i have heard of people flying within 6 months, others being told to wait a year. but in general i have not heard of much other restrictions on activity as long as a mask is worn and general precautions are taken. so curious why the restriction on campus especially given that summer is a few months away.

how have you been managing with eating so far? have you been preparing most of your foods yourself? i feel like i will be nervous to eat in restaurants after transplant. i love restaurants and good food, and so this will be a big change for me. i love to cook too, but i dont want to live in fear and avoid restaurants altogether.

hope you are continuing to do well

hello,
i just had my two month follow up after transplant and i know how you feel! i am eager to go to many places, but i can't get too excited. i'm not sure about your doctors' guidelines, but i am required to wait for my doctor's approval to travel. supposedly it's 6 months, but I can't even go to campus to take one class over the summer, so i would think traveling is definitely out of the question. just make sure your doctor is certain that you are ready to travel and be patient! best wishes and i hope you get your lungs soon!

daniela
catchingyourbreaths.wordpress.com

 

[Liza]

Hi Caitlin, I'm a mom of a transplant recipient. My daughter wasn't allowed to return to college until 6 months post. We went to Australia at 17 months post tx. You would want to get your teams approval to travel outside the country once you have returned to your normal life. My daughter was super excited for her first out of country trip and found out where she'd need to go and who she'd need to call in the event anything went wrong while we were in Australia and let her doctor's know she'd looked it all up already, when she asked if she could go. We didn't worry about the food or what she'd eat as she wasn't into sushi or anything uncooked pre-tx, much less post tx. She didn't have a processed cheese restriction. Her only restrictions were no sushi, rare cooked meats (she was a fan of well done anyway), and the normal no grapefruit. She had her favorite carnitas tacos from her favorite taqueria (taco place) while in ICU on her second day post tx. BUT each center is different so you follow what they tell you. Her center didn't place a whole lot of rules for life post tx, the ones they had made a whole lot of sense. They did however ask her why it seemed every CF'er wanted to sky dive after transplant and said they'd rather she go snorkeling or scuba diving first... which were also on her list of things she wanted to do. She snorkeled the Great Barrier Reef better than I did!

You are doing what she did while waiting, making a list of what you want to do, where to go, LIFE after transplant. Go out and enjoy it all and make your donor proud. That is what my Anna' did. Everything was for her AND Mark (her donor).

I hope your wait is a short one and be sure to come back and let us know here in the transplant section when you get your call!

 

[daniela.l]

Thank you! and i was transplanted in the University of Michigan Hospitals. I was also surprised on the campus restriction since it is a small campus and it's usually emptier during the summer! but I will ask again. As for the restaurants, I was also scared too. I had a feeding tube through my nose for the first month after transplant so I avoided restaurants. Mainly because of the insecurity of having a tube hanging down my nose in a public place haha. But after wanting to get out of the house and still being scared, I just went for it. I was going crazy being stuck inside the house. I only went to the store, but it was a start! After my feeding tube came off, I went to restaurants and stores with my mask at all times. Also, I still try to avoid places with big crowds. I tend to go to the stores at times where people are at work so it'll be emptier. At restaurants, I usually take off my mask when the food arrives. Cooking is also fun! I found myself doing that a lot while at home with nothing to do.
Good luck with everything!! Be patient