General
weighing transplant needs with basic human needs
I'm away visiting family this week in another province, the first time i've seen any of these relatives since my transplant, and the first time I've been this far away from my transplant center since I was listed.
I packed and repacked a hundred times. I was all prepared with my medical letter and sealed medications when we passed through airport security (they didn't even care. I'm sure they deal with people with more medication than me every day, and what seemed like it would be a big deal for me was just another thursday for them.) My husband and I wore masks the entire flight, and continue to do so seeing new relatives.
I feel like everyone prepped me for the medical part of travelling post transplant, and I was so concerned about taking care of myself as a transplant recipient I overlooked taking care of myself as a person. More so than struggling with bringing my tacrolimus across borders, I've struggled with being out of routine, getting enough sleep, making sure I'm eating enough fruits and veggies. It seems like such a normal thing, and a reminder that as much as transplant is my life, I also have a normal life. The things I struggle with are things every human being struggles with.
Are there moments when you're so wrapped up in being a transplant recipient you forget you're also a human being? It's such a delicate balance, I find. Right now I'm drinking a superfood green smoothie in a cafe, fulfilling my very human need for introvert time ;)
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I just took my first trip post transplant. I didn’t do anything different regarding my meds. I put them in little pouches. But I always have a med list in my purse. Never had any problems either thru security. I do pull out my insulin going thru security. I wore a kn 95 mask the entire trip. I put one days pills in pouches in my purse going and coming.
Transplant Patient
@Alalleycat2 i did that with my pills on the flight too. Prior to transplant I was on powdered meds I had to mix, which was a nightmare going through airport security, so I think I had a little negative association. I’m so glad it worked out well, and that I was over prepared rather than under prepared
I'm planning to go on a trip this week, so this is very timely. I think that when I visit family, especially, that it's easy to get put back into my family roles (I'm the oldest of 4 daughters and I tend to be the one taking care of everyone else.) If I'm not careful, I start overexerting myself and I forget my boundaries and my basics--healthy foods and plenty of rest. It's hard to say I need to take a break and rest sometimes when I really do want to go and have fun, but I need to remember my body's limits too.
We traveled last Christmas and I was so worried about going snowboarding with my family. I wanted to go, but I was worried that I'd be too slow for them and that it wouldn't be fun. I did talk with them about it and I took it slow on the slopes and ended up having a really great time. I think it's so easy to forget to take care of our "human" selves too. Thanks for the reminder!
My question to you who have traveled post transplant are there any foods while traveling that you stay away from?
So glad you guys get to travel. I have been traveling to see family since I was first transplanted. When pandemic hit things changed but doing more now. I had diabetes for 35 years prior to transplant. It was always a part of my life with meds and traveling. I enjoy life as it comes. I’m slower since transplant but friends and family don’t mind. I do sometimes but I get over it. Enjoy traveling, just need to be careful and we all know that.
Transplant Patient
I was transplanted in the middle of the pandemic, so I got transplant travel and pandemic travel in the same shot. I have a rare, genetic disease (part of why I got transplanted) and pre-transplant my meds were white powders we had that needed to be weighed out on a scale. every time i went through airport security they thought I was a drug dealer. Transplant meds are by far easier to travel with
Transplant Patient
I didn't outright stay away from anything besides what I normally do at home (no grapefruit!). I did eat a lot more carb heavy meals when I was travelling, which I don't do at home, and that upset my stomach quite a lot. I usually try to be pretty flexible with my diet, and just pay attention to what foods make me feel better/worse, and I had a few too many of my 'feel worse' foods while we were away.
Transplant Patient
When traveling (or at home), I avoid oysters, raw meat, raw veggies esp salads, and to a certain extent raw fish. Worst is salad bars - stay far away!!
So, Am I not supposed to eat salads at all? I eat a prepared salad in a bowl about once a week. Is that ok? I know to stay away from salad bars and buffets. I eat fried oysters occasionally is that ok since they are cooked?
AliEm14, you sure had it rough traveling with powders for some of your meds. I take Mycophenolate Suspension, one airport ignored it and another one opened it up and closed it. I was angry at myself because I didn’t check when the person closed it. Some of it leaked into my plastic bag. Oh darn… things happen.
Transplant Patient
@Alalleycat2 I eat salads often. I love raw veggies. I would say it’s not a rule, more what you’re comfortable with. Every body, and situation, is different. I try to ask myself less what I’m allowed to eat and more what would make me feel the best.
Transplant Patient
Apologies @AliEm14 but I have to disagree - it has nothing to do w what your body is comfortable with - it has to do with your drugs and their impact on your immune system…
The former is describing IBS etc, meaning that some of us have food sensitivities and may not react well to certain foods, for example milk products or fat, or garlic, and that should be respected of course! That is totally up to the individual and we learn as we grow older what works for us.
however, as an immune suppressed person, certain foods are just not recommended for reasons of risk vs reward. A salad bar is not a risk I would take on, a packaged salad perhaps @Alalleycat2 is if you trust the place that packaged it! Raw Oysters is should never be an option https://www.cdc.gov/foodsafety/communication/oysters-and-vibriosis.html and neither is should raw meat/fish. https://www.healthline.com/nutrition/eating-raw-fish#TOC_TITLE_HDR_4
it has as mentioned nothing to do with comfort - it is a yes/no since the risk of parasites and bacteria in these kind of foods is just known to be high.
lastly - I LOVE oysters and sashimi so am really not happy about this but after spending 2 weeks w sepsis in the icu and hospital after contracting salmonella from a salad bar….
Transplant Patient
@Karin i was referring to the comment about eating salads. I love raw veggies and salads, and see no bacteria risk because I wash and prepare my own food. I think that was what @Alalleycat2 was referring to? It was already mentioned that she’d stay away from salad bars and buffets, I was addressing the concept of eating raw fruits and veggies as a whole.
Transplant Patient
Makes sense @AliEm14 and @Alalleycat2 !! If you feel that you can wash well yourself and that the places you get the veggies from are good / go for it!!
my favorite salad is still one without actual lettuce ))
Transplant Patient
Food is as complex a discussion as individual medication dosages.
There are so many varying instructions from transplant team to transplant team.
With my first tx team, it was no grapefruit, no raw seafood, alcohol in moderation (which baffled me).
Second team said no alcohol, no grapefruit, no pomegranate, no kombucha. They detailed our pets we could/couldn’t have.
The way we choose to manage our health is up to us. It’s our life! That being said, I find that the line between compliance and self-advocacy is fine and blurry.
The docs know the medicine. I know my body. It’s best when we can collaborate and respect each other’s knowledge because both are valuable.
@Karin I appreciate your perspective here, but I don’t think it’s a win to give such pointed medical advice unless you are this specific person’s physician, even though you are a doctor.
We can always ask our own transplant teams if we have specific concerns.
There will be times we agree to disagree on this platform.
Transplant Patient
@brookegurrad i am no one’s dr and would never try to give pointed medical advice - everyone does exactly what they want - I truly agree. Just trying to differentiate between what is truly a choice based on what our bodies can adjust to (milk, fat and even alcohol! etc), vs real threats such as bugs and parasites that can kill us and that do not differentiate between sensitive stomachs or iron ones ). I think text can sometimes be misunderstood - and I hope I misunderstood yours too.
we must live our lives the way we want but there are certain facts we should all know to make that life so much better!
Transplant Patient
@Karin here is how I’m understanding what you’re saying (also thank you for replying to @brookegurrad. I feel a lot is getting lost in translation): there are risks involved with certain foods. Like we all know don’t eat uncooked chicken. And people should know these things before making their own decision.
at the end of the day, like Brooke said, we all make our own choices. And different centres and doctors have different guidelines. Personally I’ve had sushi post transplant. I know the risks of eating raw fish, I also know where my food comes from, how it’s made. That is a risk I feel comfortable with, and if something happens that’s on me. The issue I’m finding is when we say it as a hard and fast rule of “never eat raw fish or veggies or (insert food or thing here)”
there are risks and benefits of absolutely everything and at the end of the day everyone makes their own choice
Transplant Patient
I think where I'm seeing it differently (and you're right, we can easily misunderstand here) is that what you are calling "facts we should all know" I put into the category of information and research we can pull from. Yes, we know about the effects of bugs, parasites, and bacteria on our bodies. We also know how alcohol and smoking affect the body. What isn't a fact is our human experience. We as individuals have the choice to learn as much as we can, figure out what to do with what we've learned, and make decisions that we deem best for our own bodies.
As much as my body feels so vastly different from pre-transplant, the decisions I'm making are the same as a "normal" person of my age. I've just been provided the opportunity to think more about it because I've thought about my own fragility due to transplant.
Thoughts?
Transplant Patient
@brookegurrad i love how you put this. It links back to yes I’m a transplant recipient but I’m also a 20 something individual. So when I make decisions I’m not only operating as a transplant recipient but as the entirety of who I am. I don’t believe anyone is going out there trying to throw their transplants down the drain - we are all trying to do what’s best for our bodies, and that looks different on every one of us.
this is why informed consent is so important. We can all be presented with information such as raw fish could contain bacteria and what we do from there is different. I feel comfortable making those choices for myself, someone else might choose differently and that’s great for them!
in my mind it goes back to a no one size fits all transplant plan, and that even if presented with the exact same information we’ll all choose to do different things
Transplant Patient
This topic can be extremely sensitive and personal to many, as we are all unique individuals with various experiences, and we may be accustomed to differrent habits/lifestyles/risk levels.
The only point I'd like to make here is that we should all check with our respective doctors/transplant team et al. While it may not be the 'gospel truth' (for lack of a better term) - the advice/rules are most likely based on decent research & learned knowledge.
We, as humans, will question things, challenge rules and we will often test the boundaries to suit ourselves. The reality about 'research' is that multiple points of views may be supported. And, once the 'human' element is added into the mix, there are bound to be challenges/disagreements and what not.
Best of luck to all of you on your respective (similar, yet unique) #transplantJourney s.
#besafe #stay healthy #LiveLifeWell #HonorYourDonorhero
Transplant Patient
Agree w all you say @Sdey0522 !!
Hi! For the most part, I stay away from the same foods while travelling that I do at home. However, I don't eat raw fruits and veggies that I haven't personally washed away from home. Having had salmonella once, that's a risk I don't choose for myself. Other than that, I love getting out and about - with precautions, of course.
Transplant Patient
Same experience @Denise_R ! Salmonella is pretty bad and mine led to sepsis!
@Karin Mine too! Give me all the veggies! That I've washed myself - I've gotten salmonella too....
Transplant Patient
Rereading all your posts @AliEm14 and @brookegurrad (and you should know I am the worst patient myself - always testing limits and being a cowboy), I understand your frustration with my comments - I merely was trying to differentiate between a potential discomfort due to food (fat/milk/garlic), vs a real threat (bugs!!). What we do with that information is obviously our choice and no one should ever tell us differently! I just am a stickler for terminology and the risks w the former is a gassy tummy for a night while the latter is death !
that said - it is OUR choice what we do - risk vs reward which I mentioned as well.
hugs K
Transplant Patient
@Karin thanks for caring enough to share