Soy Sauce/Miso question
Susan
transplant? Soy sauce and miso is fermented with aspergillus - which
i know is dangerous for our lungs. What I really want to know is if
it's safe to eat daenjang which is a Korean fermented soybean paste -
but many ppl are unfamiliar with it. Are miso products safe if
they're boiled? I know that regular miso soup is not boiled but
simmered because boiling it kills the 'good' bacteria in it. I plan
on asking my transplant team on Monday, but wanted to check in to see
if anyone knows?
Susan
Double lung & heart tx 9/16/08
Re-transplant of left lung 6/13/09
UCSF
JayNY
I don't know specifically the answer to your question, but at
Columbia, we have a transplant nutritionist that we can either call,
visit with, or email with any questions about post transplant
nutrition issues. She also taught the pre-transplant patients in the
mandatory pre-transplant educational support meetings we had to attend
while we were waiting on either list (active or inactive).
If you don't know who does this for your transplant team, you should
call or write one of your social workers, who I'm sure will put you in
touch with someone:
http://www.ucsfhealth.org/adult/medical_services/organ_transplants/lung/experts.html
If you find answers, it soule be great if you could pst them.
Happy Holidays, Jay
Cacteur
eat miso soup and soya sauce a lot. Maybe I should ask :(. I am
constantly ringing my dietician, because many basic food items in a
New Zealand Maori diet are not addressed in the literature either. The
NZ tx service is writing a guide for Maori now. Our main problem is
raw shellfish. We never cook shellfish and it forms a large part of
our diet. They have OK'd eating lightly steamed shellfish, with the
proviso that we know that the area where the shellfish was gathered is
clean.
I'd be interested in the answer to your miso soup question too Susan.
Susan
should be fine to eat Miso soup. I was just paranoid after reading
online of all the restrictions other hospitals and organizations wrote
for immunosuppressed people. Besides miso I've also read no deli
meats and sprouts. The only dietary restrictions I was told from UC
was no raw meats/fish, no grapefruit, and no soft unpasteurized
cheeses.
JayNY
There are of course, many more food restrictions than the ones you
mention. I know of some hospitals that only tell their
immunosuppressed patients to avoid grapefruits, but anything else is
okay.
My hospital gives us a very long list of restrictions, and of course
we also have a nutritionist that we can ask for more information.
You say no raw meats, but you don't mention rare meats. You also don't
mention other raw foods, such as sushi.
You also don't mention undercooked foods, such as eggs. The USDA has
been warning people for decades about undercooked eggs, and we were
taught no sunny side up or over easy eggs. (One recipient from another
hospital actually told me that he's allowed to eat sunny side up eggs
as long as they are cooked well enough. Sad to say that he didn't
understand the incongruity of what he said.)
Some restrictions are obvious, such as no public salad bars unless you
know they are fresh, clean, and safe. Salads are fine at home, since
you can clean the raw veggies well, but it is unlikely that a
restaurant will do the same. We were also told to avoid public water
bottles, such as those poland spring water in public places with 5
gallon bottles. As you mention, no cold cuts and unpasteurized soft
cheeses, but you don't mention raw berries, such as strawberries and
raspberries, which are almost impossible to clean well enough. You
mentioned sprouts, but there are also herbs that are a no no, and
obviously herbal supplements without approval from your tx
nutritionist. Some hospitals have published lists of herbs you should
not eat. There are more, but most items are a no no if they are not
cooked well enough, or cannot be cleaned well enough.
There is an excellent document from the USDA specifically for
transplant recipients with many restrictions, warnings, and
temperatures that you must cook food to. I know different hospitals
give their patients different rules, but this does not contain the
bias of an individual setting up the rules they believe in, and these
should be universal for all immunosuppressed people:
http://www.fsis.usda.gov/PDF/Food_Safety_for_Transplant_Recipients.pdf
My hospital is fairly conservative, but they don't want to have any
patients dropping dead from having a sushi dinner. They point to their
published high survival rates, and ask the patients where are their
priorities, to have a yummy piece of rare steak, or to live longer.
Of course, I know transplant recipients who are 15 years out and
follow no rules. I also know people who are 100 years old and smoke
like a chimney. I know that I wouldn't be so lucky.
Luba,
I know my transplant hospital has a list of foods not to eat but as of
right now, I probably have forgotten most of them!
Really all I can remember is no raw uncooked meats, no raw seafood, no
grapefruits and little to no wine. I am pretty fine with
those rules since I followed them before transplant. Of course I never
went for sushi so no problem there. I wish I could help
you and the others here but I know I am not that knowledgeable and
would advise to do just as you did, call your transplant doctor.
Congrats on your re-transplant!
Luba
Natalia
in my case? I took showers just fine just had to keep my stitches from
immersion (which might happen in a bath?) how odd all the differences.
all: i've been told bottled water since the beginning, but i will
reuse the bottles because i can''t afford to buy so many of them.
filters are also an option. no fountain water though. i stay away from
sushi, blood red steak, uncooked shellfish, and expired foods in
general.
have a good day!
On Jan 7, 7:46 pm, stevenogorman <stevenogor...@gmail.com> wrote:
> Hello,
>
> here in Ireland we are told no showers for the first three months post
> op; take baths.
> Also dont eat:
> uncooked vegetables
> fruit with the skin
> strawberries
> cream cheese
> no tap water
> no ice in drinks
>
> No tap water is a weird one; I don't trust it here in ireland after
> cryptosporidium was found in Galway without alerting the people. But
> in Finland they drink tap water no problem, and I do too when I visit
> anywhere in the mainland EU.
>
> I was told also to make sure that any eating/drinking utensils are
> doused in boiling water before I use them. I was too embarrassed to
> ask.
>
> I have broken the Strawberries rule, the tap water rule in Finland,
> and the vegetables rule because that rule makes chocolate and
> McDonalds sound more healthy than fresh fruit and vegetables! The
> word paranoia comes to mind, and I am in the minority who have not
> caught diabetes ;)
>
> I did once get gastro from the ice in a fruit juice in a cafe once...
> not a nice experience ;) I reckon the ice was there a long time. Ice
> in Irish bars is replenished regularly ;) lol
>
> Dont drink from bottled water after the bottle has been opened a
> while; I break that too!
>
> I haven't heard anything about soya! I use soya milk for my porridge
> for breakfast.
>
> A happy and healthy new year to all!
>
> Stephen
>
> On Jan 3, 1:29 am, "Luba," <lu...@hotmail.com> wrote:> Hi Susan,
>
> > I know my transplant hospital has a list of foods not to eat but as of
> > right now, I probably have forgotten most of them!
> > Really all I can remember is no raw uncooked meats, no raw seafood, no
> > grapefruits and little to no wine. I am pretty fine with
> > those rules since I followed them before transplant. Of course I never
> > went for sushi so no problem there. I wish I could help
> > you and the others here but I know I am not that knowledgeable and
> > would advise to do just as you did, call your transplant doctor.
>
> > Congrats on your re-transplant!
>
> > Luba
>
Cacteur
instructions reflect different conditions in different areas.
We are instructed to only drink what we call "mains supply" water,
that is, council treated tap water, as opposed to untreated rain or
bore water. Bottled water is also fine.
With Berries we have to wash them thoroughly in cold water, a process
that ruins raspberries and boysenberries, but strawberries and
blueberries are fine. I use frozen raspberries.
Fish? Quite a simple formula here. Fish with legs? (Crabs, Prawns,
Crayfish/Lobsters) no way, cooked or otherwise, Shellfish? Cooked or
lightly steamed only. Flat fin fish. Fine, including raw, provided it
is under a day old, and caught from a clean sea.
The main emphasis here is on the healthiness of the kitchen your food
comes from, maintaining your own and knowing what to look for in
retail outlets. All ready to eat food outlets in New Zealand are rated
by our Health Department, on a scale from A to E, and must display
that rating, so sticking to A rated takeaways and restaurants is quite
easy.
Showers? No instructions given at all. I had a full shower about three
days after surgery, protecting my wound of course, but still a full
shower. I invented all sorts of crazy plastic covers over the next few
months but a pretty much showered daily from about a week out.
I guess like most people, I was totally paranoid immediately after
transplant and didn't want to go out amongst the "masses" or touch or
eat anything even remotely dangerous at all. I couldn't even
contemplate eating a takeaway and survived mostly on noodle soups and
canned stews.. lol. I soon relaxed and am pretty happy with my eating
habits now. I'm not afraid at all to eat from any A rated food outlet,
and am confident I can spot and avoid bad practices and foods easily.
Natalia
babydoll007
different hospitals! The only
dietary restrictions I have are:
-no raw meats/fish
-no grapefruit
-no soft unpasteurized cheeses
-no drinking tap water
I have eaten deli meats, raw strawberries, raw rasberries and rraw/
cooked sprouts without a problem. I was able to take a shower pretty
much immediately after being released as long as I didn't let the
shower hit my incisions directly for the first few days. I eat my eggs
over easy although I do cook them slightly longer than I used to
before my transplant. I have also had miso soup and soy sauce without
a problem....actually this is the first time I've ever heard of that
even being an issue.
Great Question!
Imelda Vasquez
Heart/Double Lung tx 6/01/07
UCLA
claire. mcauley
I can't believe that it is going on 3 years since your transplant. Are you
doing well?
The only dietry restriction I have is:
no greatfruit
no Biaxin and Erythromycin both anti-biotics.
Do you still have side effects from the drugs.
I am on Cyclosporin, Cellcept and Prednisone.
Do you still have chest discomfort from surgery?
I had a clamshell incision and am still tender. I was told that it could
take up to a year or it can stay the same.
Did you lose any hair? I am, no bald spots yet!
Why couldn't it be the hair on your head growing and the hair on your face
and elsewhere fall off:))
I hope to hear from you and others.
Claire McAuley
Heart/lung Tx
July 27/09
I am having my 6 months assessment starting Jan. 24th.
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THOMAS MANGINI
Charlene Mangini
4/17/05 - dbl lung tx - UCLA
JayNY
and-such with no problem.
You could certainly eat steak tartar or sushi or over easy eggs many
times without any problems.
It's that one time that you did not kill that bacteria because you did
not cook your food properly, or avoid that pathogen because you
wanted some fresh apple cider or a (non-reheated) bologna sandwich.
Personally, I consider this similar to russian roulette, and I know
that there are some people who can do almost anything with no
repercussions, but I would be a loser in that game.
Surely everyone with suppressed immune systems won't die with their
first tekka maki, but this doesn't mean that it can't happen at some
time in the future.
I know some people who tell me that if they can't eat at salad bars in
restaurants, they would rather not be alive, and that's fine. I also
know people who say the same thing about smoking, and they tell me
that they can breathe better than I can.
Everyone needs to make their own choices about what risks are
acceptable. Some would rather eliminate all the easy ones (e.g. foods
to avoid), while others consider this a quality of life issue, and
can't live without rare steak, undercoooked eggs or fresh raspberries.
I provided a link above to a food safety for transplant recipients
document from the USDA, which should be hospital-independent. Where
some hospitals say eat anything, anywhere except grapefruit, and
others have large lists of precautions, the booklet from the USDA
(which doesn't list everything, like cautions in restaurants) could be
considered an independent voice of reason for all.
Best health to all, Jay
On Jan 12, 10:55 pm, THOMAS MANGINI <affordable...@msn.com> wrote:
> HI, I had my transplant 4-1/2 years ago at UCLA. Like Imelda, I've been eating all types of berries, my eggs over easy, deli meats. I do dring Reverse Osmosis water, and avoid shellfish (which is probably the only thing I remembered). I just had a check up last week, and mentioned this discussion to my doc. He said I was going to drive myself crazy and just to keep eating the way I've been as I'm doing fine. Who do you see at UCLA, Imelda? I see Dr. Saggar, but I started out with Dr. Ross just after transplant. I could also shower as soon as I left the hospital. For Claire, I didn't lose much hair, but it did seem to stop growing for a while. I don't remember how long, but it's fine now. I've also eaten miso soup and soy products without any problem. It's so nice to see there are so many of "us" out there. I do foster care and had a substitute case worker come visit last month. She was on leave recovering from a kidney transplant, so we touched on the kiddo and talked a lot about the anti-rejection meds.
>
> Charlene Mangini
>
> 4/17/05 - dbl lung tx - UCLA
>
Cacteur
paradox we live with. It's a question of risk management. Some will,
(like banks and insurance companies) insist on eliminating all
possible risk, others are happy being selective in their precautions,
preferring to accept some risk to continue enjoying aspects of their
pre Tx lives.
The key I think is to understand your situation as a whole, and learn
as much as you can. Only then can you even begin to make decisions
about how you are going to handle your diet. I have 24 hour numbers to
call for all sorts of emergencies, including dietary, and at a few
months over three years since my Dbl Lung, I've only just got
comfortable enough to stop harassing her.
I regard raw oysters as the food of the gods. Especially Bluff
Oysters, a deep seabed oyster from the bottom of New Zealand's South
Island. They are huge and delicious. I have decided I will never taste
them again, ever. A painful, but never the less, pretty obvious
decision to make, when you understand why they are a no-no. I know a
bloke who has had a feed of raw scallops, but I'm not interested. I
think perhaps our slightly more liberal attitude to seafood may have
something to do with us having clean oceans? That seems to be the
emphasis here, where the seafood was gathered, but I don't want to
risk it myself with uncooked shellfish.
I have always enjoyed BBQ's and Hangi cooked food, (Maori ground oven,
sort of half smoked and half steamed), and when I was told the risks
here I originally decided to totally avoid both. But once I got
comfortable preparing my own salads at home, and stopped being too shy
to ask to cook my own meats, I haven't looked back. I've also
discovered food outlets that cook "Hangi" food in stainless steel
ovens, wonderful! So the decision I originally made about barbies and
hangis has gone right out the door.. lol..
That's it really. So much of what is "safe" for others is less "safe"
for us, and it's up to each of us to decide how we will manage this.
What we are, and are not prepared, to trade off against something
else, what sorts of risks we are prepared to take and so on. Sounds a
lot like being alive doesn't it? Enjoy it !!!!! ;o)
babydoll007
I know I can hardly believe it myself! You'll becoming up on your
second year soon after mine...wow! I am doing pretty well and haven't
had any major issues. I do have some side effects from the meds but
only minor ones. I get headaches when my Prograf runs too high and
feel shakey. Lately have had some stomach pains but I've had some test
to find out whether it is an ulcer or not. I get my results on Friday
the 15th. I have some joint pains but my doc thinks that is a residual
issue left after having had so little oxygenation in my body for so
long before my transplant. I do have some hair loss but not as much as
I did in the beginning. I definitely do not have any bald spots
anywhere but I know of others who do. It's kinda depressing losing so
much hair but I guess it could be worse. I agree with you....why
couldn't it be from our faces, legs and other areas to fall off! lol
I am on 3.5am/3.5pm of Prograf, 250 twice a day of Cellcept and 5mg of
Prednisone. I do not have anymore chest discomfort at all. I only ever
have discomfort when I have to have an ultrasound or something and
they run that little ultrasound ball thingy over my incisions...they
are a little sensitive when it comes to things like that. Otherwise
they don't hurt at all. I believe in my first year is when I felt the
most sensitivity and I did have chest discomfort until a little past
my first year. It took me a little longer to heal with my incision
since I had to be cut open a second time a couple days after my
transplant. I did have chest pain for a couple of days after New Years
when my dad hugged me a little too hard....so be careful with those
big strong hugs!
What is the 6 month assesement? Is that like a follow up? How often do
you get check ups?
I have appointments at UCLA every 3 months and blood work once a
month.
So how are you doing? Do you have a lot of side effects? Do you still
have alot of pain from your incision?
Are you on facebook or have yahoo messenger. Please feel free to email
me at baby_d...@yahoo.com since I don't always check on here. I was
so happy to hear from you on here by the way! :)
-Hugs!- Imelda Vasquez
-Heart/Double Lungs
June 1, 2007 - UCLA
Johnny Di Nitto
mentioned as a NO NO to me....never heard any of my heart transplant
friends mention it either I dont use a soy often but once a month or
so I cook a recipie that requires it....and never had any ill effects
from it after all this time...best to check I guess with your docs if
you have questions.....meanwhile I want to enjoy it!!!! Do well,
JOHNNY
Johnny Di Nitto
days...WOOO I would have been "ripe" otherwise after all those
procedures!
> > > > UCSF- Hide quoted text -
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