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

[juliesdreamteam]

Oh I see. So, while others post precautions of their centers, those post are not "irresponsible". While my posting a differing post is. The "life in a bubble" is a figure of speech used by the transplant surgeon. That is a fact. I'm assuming you weren't there for that conversation. I would sincerely hope that no one use this forum as a means to replace the educated transplant teams directions.

My response had everything to do with her original post. She asked a question about other's directions. You seem like an intelligent fella. Read my post again. Is there anything in that post, that would suggest a person should follow the same guidelines? Or could it be...just maybe....that I offered an account of a different personal journey?

I'll take another stab at this and draw it to a close. You may well be 13 years out from Tx. That is fantastic. I wouldn't dare be judgmental of a person I didn't know. I'll go out on a limb and say that I've probably done more to end this disease than many and you know shit about what pride this CF spouse has.

Continued good health.

 

[coltsfan715]

I drink filtered water as well, but know that many patients tend to stick with the "Bottled water" only rule.

I have also heard the no fresh fruits and veggies from other patients at my center, but when I asked my nurse and physicians they say wash them for a minimum of 2 minutes or something similar and a definite no to grapefruit and pomegranate. I have also been told no strawberries or raspberries and blackberries, but I eat all of those and just wash them thoroughly. I would more be careful eating any of those things out in public, I choose to eat most of my fruit and veggies at home. Veggies I eat out if they are cooked.

As for meats. My center also has the no sushi rule, which is fine because I don't care for it anyway. They also say that chicken and pork and meats that come in contact with the digestive tract of animals must be cooked well done. Steaks like filets and things don't need to be cooked well done because they aren't in contact with the digestive contents of the animal, according to my centers infectious disease guy. I have eaten steaks medium rare for years and never had a problem. I eat all of my other meats well done.

I agree with Nathan though. Listen to your center and follow their rules, but I would also ask for clarification. As I was told by my coordinator, sometimes they go to extremes when telling patients what they can and can not do because there are some patients that need to be scared to death in order to get them to follow the rules and others can be given the common sense version. If you have questions I would take the info you get from other patients and take it to your doctor or nurse and ask for clarification.

 

[cftransplant]

R

Once again. Google grapefruit and immunosuppresents, thousand of documents. Google black cohash and transplanted organ rejection. Go to CDC, NIH, any TX journal, etc. Google CF and digestive issues, thousands of documents.

Now please provide one link, not the thousands above, just one simple link. I am sure you are correct and your small TX center has medically reviewed literature they have written in the medical journals. I for one, would simply like to read this article for my education, and I am sure my medical professional wife of more years than you have lived, could learn something to discuss with my TX team. Your post was advice I have never seen before and would like to learn from the wisdom of your center. Article or publication please.

Never have or would question a CF's family or spouses pride.

Hope you continue to help to end the suffering.

I have repeatedly said to take the advice of your TX team. Others have said the same thing.

CF 63 TX cepacia

 

[juliesdreamteam]

Here's a link to the surgeon. Charles Hoopes. Click on the link below and read his Curriculum Vitae. You'll have your choice of articles to read and while he may not be as intelligent/educated as your wife in the medical field, he seems to be a pretty intelligent fellow.....my guess is that your transplant team knows of him.

http://www.mc.uky.edu/surgery/ct/hoopes.asp

 

[cftransplant]

Here's a link to the surgeon. Charles Hoopes. Click on the link below and read his Curriculum Vitae. You'll have your choice of articles to read and while he may not be as intelligent/educated as your wife in the medical field, he seems to be a pretty intelligent fellow.....my guess is that your transplant team knows of him.

http://www.mc.uky.edu/surgery/ct/hoopes.asp

Once again you either refuse or can not answer and provide a link refuting that post TX eating grapefruit is dangerous for many anti-rejection medications. Do you have an article from this doctor (or anyone) stating that the drug interactions for rejection medication listed on the meds.(from the manufacturing companies) or the thousands of articles published are incorrect.

Please stop changing the subject and answer the specific request. Literature or cite please.

Where have I questioned the TN TX teams IQ or skills? That is not who I am questioning.

I do not appreciate your snide remark about my wife, your failure to support your position is descending into your petty insults. Lets put our big boy pants on and leave the women out of the conversation.

CF TX 63 cepacia

PS. nice list of medical publications that have nothing to do with the conversation (yes I checked them all), you do realize this, don't you? Glade the doctor went to Duke. Would you like me to e-mail the doctor with the link you provided and ask him directly on this issue? Not sure he would respond to such a silly question, but perhaps his answer would be very interesting.

 

[cftransplant]

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!!

Thanks for the pomegranate info. Looked it up and the number of interactions is covered in the literature with some common drugs used post TX. Glade to learn of another potential juice issue.

CF TX 63 cepacia 13 years out

 

[Vejling]

Ate Sushi in the hospital after transplant. We Can eat raw fish that has been frozen - hence killing the dangerous stuff in fish... Havent heard of any restriction on fruits and vegies, exept for grapefruit juice..

/jan Denmark

 

[athletixbc]

I was only told no grapefruit and no garlic capsules (in prepared foods is ok). No over the counter vitamins and minerals unless I clear it with my doctors first. They just want to make sure I don't take anything with immune system boosting properties, like Echinacea, St. John's Wort, or Arginine.

I was never told no sushi, which is good because I love sushi and I've eaten it at least once a week since my transplant with no ill effects. I was told to properly wash all fruits and vegetables before eating (something everyone, transplant or not, should be doing), but nothing that said they couldn't be eaten raw.

 

[Cbegley]

I am sorry that it has been so long-and you might not even read this, but I did ask him. He told me that when he opened his eyes and air filled the entirety of his lungs he finally knew what it was like to really "just breathe." Even though he was in a lot of pain he said he couldn't believe how easy it was to just feel air go in and out so smoothly and effortlessly. It made me really think about how he's never known what normal breathing was..

 

[Cbegley]

Yes, he is the one who did my husband's surgery. He's wonderful, very serious.

Here's a link to the surgeon. Charles Hoopes. Click on the link below and read his Curriculum Vitae. You'll have your choice of articles to read and while he may not be as intelligent/educated as your wife in the medical field, he seems to be a pretty intelligent fellow.....my guess is that your transplant team knows of him.

http://www.mc.uky.edu/surgery/ct/hoopes.asp

 

[MikeInMT]

The only restrictions the Dr's told me were: No grapefruit, as it interacts badly with anti rejections, No Sushi, as a higher risk for bacterial infection, and lastly to not eat undercooked meat. This one I ignore, as I can't stand medium and above cooked steaks.
But the "Universal" one all the Dr's and centers tend to agree on is the grapefruit, and sushi one. Happy eating!

 

[Joblazer86]

The only restrictions the Dr's told me were: No grapefruit, as it interacts badly with anti rejections, No Sushi, as a higher risk for bacterial infection, and lastly to not eat undercooked meat. This one I ignore, as I can't stand medium and above cooked steaks.
But the "Universal" one all the Dr's and centers tend to agree on is the grapefruit, and sushi one. Happy eating!

I was only told by my transplant team to avoid grapefruit, sushi and alcohol. Havent heard of the others but like everyone says each facility has different guidelines for post transplant patients.