My husband just had a transplant...some of his nurses and his surgeon are saying...

[Cbegley]

He can't have certain foods and drinks. For example, they said he isn't allowed to have any fruits or vegetables that are fresh (otherwise, they have to be cooked) And he cannot have stuff like sushi (with the raw fish in it) And water that isn't bottled. Is some of this true, and do any of you have a comprehensive list of what to eat/not to eat post transplant?

Btw, he is doing amazing. He got the surgery Tuesday night and I'm sitting here with him now. He has oxygen stats of 100 without oxygen and has been on room air the whole time. Got up and walked around the nurses station twice on this floor the day after his surgery and right now he walked 6 times around it in intervals today. His bronchoscopys are doing well too. He's just doing so well

 

[AmalynRose]

I don't know what the list is and if these restrictions are commonly given to transplant patients. I do, however, know quite a bit about biology (biology major), so here is what I think. It makes sense that they do not want him to have fresh fruits and vegetables. Post-transplant his immune system is going to be even lower than before. Although fresh fruits and vegetables and great for your health, they are prime targets for microbes and mold to live. The majority of these microbes are harmless. Bad microbes like listeria are going to be what the doctors are concerned about. They may also be concerned with mold. I recently bought some bananas that had very small mold growth near the stem, wedged in between the bananas where the light and air couldn't reach. Although you don't eat the peel, my point is if you touch the mold, then peel the banana and touch either your now moldy fingers to the part you eat or to your mouth, you have just introduced the mold to your system. Cooking introduces heat, which the vast majority of microbes cannot survive.

The raw meats and no water other than bottled are probably no-no's for the same reasons as the fresh fruit and vegetables. They are worried about microbes or mold spores in the water and bacteria in the sushi.

So happy that your husband is doing well and I wish him a speedy recovery!

 

[RytheStunner]

Different hospitals have different rules, some more harsh than others.

The two common rules among all centers is no grapefruit and no sushi.

The fresh fruit and veggie thing is questionable, I've only heard of one center that has made that rule, the rest don't seem to restrict it.

 

[stranger]

If you get a chance, can you ask him what was it like when he opened his eyes and if you feel like sharing that here? I would appreciate that. I am so very happy for the both of you.

 

[NathanL]

As mentioned above, different transplant centers have different rules, and the two that seem to be across the board are grapefruit and raw fish. Grapefruit can affect prograf levels (pay attention to food and drink labels for anything containing citrus), and those with suppressed immune systems are much more susceptible to illnesses from raw fish (and raw meat of any kind).

We were told to simply be more careful around raw fruit and veggies, making sure they were washed well.

No matter the case, you need to do your best to be compliant with the guidelines your tx center gives you. Non-compliance of any form will not be received well by your medical team.

Nate

 

[CrisDopher]

I'm pre-transplant at NY Presbyterian and have heard the lectures several times. They have very good reasons for each and every dietary restriction. These rules aren't being put in place just to somehow test you; they're there for the patient's health.

I should think that patients and caregivers would be intensely curious about what post-transplant prohibitions OTHER centers have that go beyond their own, and ask why that might be so. My center seems to be more restrictive, but they have great reasons for each and every rule. By asking the professionals the reasoning behind those rules, I've gained insight into other things that may have to be avoided for the same reasons, but which haven't made the banned list yet. Instead, I often see patients trying, for whatever reason, to negate the rules their center laid down by showing that somebody's else's center doesn't have that rule. Is your life really worth that?

CBEgley, I'm surprised your husband got to transplant without some education beforehand, including the lists of banned foods and activities. How did that happen? NOBODY should be waking up after getting new lungs and be surprised by "no grapefruit, no sushi". Even the caregivers.

Cris

PS Also....no pomegranite stuff either. Same interference process as grapefruit, apparently.

 

[azdesertrat]

I had a transplant. Post-trans we were told no raw vegetables that are grown in the ground. For instance, onions & potatoes.
I was also told no grapefruit & no sushi. The reason for the restriction on raw vegetables is the risk of infection. There are many organisms in the ground that get on raw vegetables. Some of these organisms can make transplant patients sick.
As for the 'no sushi' rule, I thik that's pretty easy to figure out. Eating raw fish or meat can be bad for healthy people, much less those of us with compromised immune systems.
I'm not sure why the 'no grapefruit' rule.

 

[RytheStunner]

@Cris -I'm sure the same notion applies to other centers who have their rules. Obviously NY Presbyterian isn't the supreme mothership of transplant centers (that is actually the one center I mentioned in my comment above that I've heard the raw fruits and veggies restriction from), so other centers obviously have good reasons to make or not make certain restrictions as well. If their numbers show success, then obviously they're doing something right. Obviously some doctors/centers can be overcautious (in all aspects, not just transplant). Some doctors have told their CF patients they shouldn't play sports. I'm sure you wouldn't apply the "there's a good reason for it and they should stick to it" to that rule.

 

[NoelA]

The anti-rejection med's that he is on for his body to not build a defense against his new lungs (they will be seen as "foreign" from his body's point of view) decrease his immune function. I work in oncology and our patients are not allowed to have live plants, fresh fruit, and of course, no visitors with possible infection. Same with HIV pts or anyone with decreased immune function. It's a good rule and it's there for a reason, not just because they want to make his life harder, I promise! Safety over sushi Congratulations!!

 

[beautifulsoul]

He can't have certain foods and drinks. For example, they said he isn't allowed to have any fruits or vegetables that are fresh (otherwise, they have to be cooked) And he cannot have stuff like sushi (with the raw fish in it) And water that isn't bottled.

I've never heard the restriction about water that isn't bottled. I drink water from the sink faucet all the time. Although, I filter it though a Brita (water system filter) water pitcher.

 

[CrisDopher]

Rythe.... "obviously".... you keep using this word. I do not think it means what you think it means.

 

[cftransplant]

Use "distilled bottled water", not bottled water. Bottled water is regulated by the FDA and can and does have bacteria. Tap water is regulated under the Clean water act by the US EPA and is better tested and regulated. Try wikipedia on cryptosporidiosis. The US has many third world water systems. In 1993, Milwaukee sickened 403,000 with crypto and killed over 100, many immunocompromised. When I travel in the US or overseas I only use distilled bottled water. I use my deep well water after testing and do not rely on any public water system. When I travel to my TX center, I buy distilled water when I arrive off the flight and only use this water.

Stay out of public pools, or warm water ponds and lakes.

CDC recently warmed about boiling water for nasal flushes because of two deaths from amoeba in drinking water.

Past life a microbiologist, biologist and environmental scientist.

CF 62 cepacia 13 years post TX.

 

[echolaura]

Grapefruit THINS the blood, I'm pretty sure that's why no grapefruit. I work at a cardiology practice that cares for patients who take blood thinning agents (Coumadin) and grapefruits are STRICTLY prohibited due to blood thinning properties. When my daughter coughed up blood, she was given a drug to aid in blood clotting, so that makes sense.

 

[Cmk0808]

Diet

My boyfriend had a transplant 3 months ago and he had a few dietary stipulations in the beginning. His doctors said no raw fruits and vegetables and meat has to be cooked well done. Because the immune system is basically whipped out, transplant recipients are more likely to contract an illness due to raw food bacteria. Actually, just last week he got the OK for salads, and raw vegetables again. Still no Grapefruit and pomegranate because they counteract with the rejection meds, and he also still makes sure his meats are thoroughly cooked. (hes gone this far... who wants to die because a little e-coli in their meat) We are both bottled water people at restaurants.. but he does drink tap water at home and has since we came home from the hospital 16 days after transplant. No sushi and no raw seafood... no alcohol.... But that's basically it.. He always says he would take another chance of living over some sushi any day Hope this helps!!

 

[RytheStunner]

Rythe.... "obviously".... you keep using this word. I do not think it means what you think it means.

When you're not smart enough to think logically, the word needs to be emphasized for you.

 

[AmalynRose]

I've never heard the restriction about water that isn't bottled. I drink water from the sink faucet all the time. Although, I filter it though a Brita (water system filter) water pitcher.

I just learned about this in my Parasitology class! They may not want transplant patients drinking tap water because of potential contamination at the water treatment facility. The most notable recent case was in 1993 when there was an outbreak of Cryptosporidium parvum in Milwaukee, WI (http://wwwnc.cdc.gov/eid/article/9/4/02-0417_article.htm). Anyone in the area who drank tap could get sick and residents had to start boiling their tap water to kill the parasite. At least 403,000 people became ill and 69 people died due to the outbreak, most of which were AIDS patients (http://www.jsonline.com/news/milwau...yptosporidium-outbreak-099dio5-201783191.html). However, this parasite can be deadly in anyone with a suppressed immune system. Although these instances can be rare, they still can happen.

 

[juliesdreamteam]

My Julie's doc didn't believe that he transplanted her to live life in a bubble. There is nothing that she can't eat. I wrote her story....Julie: The Courage to Breathe. All proceeds to the CF Foundation. Take a read. It's available everywhere. Enjoy the 2nd chance my fellow CF spouse. God Bless...CURECF!!!

 

[cftransplant]

juliesdreamteam

1) The information on crypto was referenced above, before your post.

2) Saying a TX patient can eat anything is just silly. Read the contraindications to the medications she is on for the rest of her life. If you are taking parasitology, you either know or will learn about the risk of eating raw seafood (sushi). Poorly cooked meat is in the news yearly on the number of deaths and food recalls from the USDA.

3) Not living in a bubble is the object as one recovers. Taking crazy risk does not live up to the gift, a duty to be reasonable is implicit in taking the lungs that could have saved someone else (the person giving the gift dies, someone else on the list likely died when you took the lungs). (example: I do not play on class 5 rivers since my transplant). Not sure base jumping is a good sport to get into, to preclude from living in a bubble. Travel in hostels in India or other high disease areas is likely not the best of choices. Scuba diving post TX obviously is very tempting but dive physiologist and DAN see to be downers. My life changed post TX with some less high risk fun.

Pay attention to the TX teams and their advice, they have seen issues in the past. Just my two cents.

CF TX 62, cepacia 13 years out (any cepacia's prior to and post TX out on this board (only heard from one))

 

[juliesdreamteam]

I read your reply and respect your concerns. I found myself getting mad a bit then realized that you're not a bad fella at all. You care about others with CF and those that have been transplanted. I get it. I'm simply reporting fact. Her team didn't want her to live in a bubble. Maybe that's because they didn't know that they were transplanting Julie Ice....the strongest...most courageous cystic to ever walk the planet (it's true folks...she's flippin' amazing). As a husband, I was concerned about the types of food she would eat. I guess it's up to the individual to determine what's best for them.

 

[cftransplant]

Juliesdreamteam

I find your post irresponsible, not factual and a profound disrespect to the CF community.

The post was started with Cbegley, whos husband just had a TX, and she asked question on their TX centers prohibitions on certain foods. Rythestuner and NathanL were correct and added different centers precautions. NathanL advice on compliance with the TX center guidelines is obviously well reasoned. Chirs Dophen, AZdesertrat, NoelA and CmK0808 obviously added to the conversations. Amalynrose is factual on crypto deaths.

Your "simply reporting the facts" that "there is nothing that she can't eat" is dangerous and not backed by science. The UK NHS has articles on grapefruit and immunosuppressants (real facts). How about the US National Institutes of Health advice on Black Cohosh (the reported organ rejections and death)? Simple searches on either of these issues finds numerous sites and warnings along with the contraindications many of the TX drugs have on the product sheets. None of this is in dispute.

What the medical science and TX centers advice to recent TX patients that they manage, has to do with living "life in a bubble" is mind numbing. Many CF's have, shall we say "digestive issues". Post TX this "condition" is not cured, and I fear that some CF's will feel poorly if they are not the only incredible CF in the world that can't eat everything.

Obviously, adhere to the advice of your wife's TX center. I suspect that you have not understood her teams precautions post TX (short term is the highest risk, the questions that started this post). Perhaps her TX center has some peer reviewed articles on "eating everything"??? I tried to find information on her small TX center, but post TX information was not available.

I understand your pride (as all spouses have with CF mates). Thank God she had a TX and is doing well. The "life in a bubble" and "eating everything" has zip to do with the conversation.

CF TX 63 cepacia 13 years out