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Posted 5/11/2011 4:02 PM (GMT 0)
confused  I remember that Pam posted the dietary restrictions Ron got after his Feb transplant.

Posted here or on their blog.

And I can't find it at the moment.

Would she repost that list of instructions?

They haven't said anything at our clinic yet, but we are having to eat at  the hotel coffee shop and call places for delivery and it is hard. 

I got "room" stuff..cereal, pb&j, bread, jello, fruit, juice...but food is hard with a dorm fridge!

Eating OUT is awful for fats and sodium!!!

For that alone we want to be home.

But we need to be close to hospital for a little bit more.

Thx,  Carol

Posted 5/11/2011 4:23 PM (GMT 0)
ML-
a quick cut and paste from Pam's blog...a bit about diet and other cautions:

* Ron should be discharged Thursday or Friday
* Return for lab work 2 times a week
* Clinic visit (doctor/labs) once a week
* No lifting more than 5lbs for 6 weeks
* No drivning for 4 weeks
* Take medication at the EXACT same time everyday (anti-rejection drugs - nothing to play around with)
* Avoid crowds 4 weeks
* NEVER clean litter boxes, fish tanks, bird cages, turtle tanks (no restrictions on dogs - we don't have any other pets but our precious 3 dogs (which by the way, opened the pantry/paper towels from one end of the kitchen to the other, got into the popcorn, tried to dig their way to China through the carpet in our laundry room - that was the first day - then they went to the kennel on vacation)
* Can't be around the children for 7 days if they receive as 'live' vaccine shot such as polio, MMR....childhood shots
* Any new prescriptions must be cleared through the transplant clinic - that's for life!
* Can't visit any construction or demolition sites (asbestos)
* Can't rake leaves - due to mold spores
* This is the kicker - NO BUFFETS - ever - only cook to order food - plus nothing rarer than medium


Hope this helps a bit.

Emma
Posted 5/11/2011 4:54 PM (GMT 0)
Also, wash hands after opening or closing doors, after handling money. Don't touch your face unless you've used alcohol soap first. Not only no buffets, no salad bars, no raw meat or fish, no grapefruit or its juice, and it's preferred you control what you eat (mostly from a sanitary standpoint) by not going out to eat for the first 3 months. Having said all of that, by 6 months out, I became less attentive to hand washing and couldn't stand overcooked food, so I went and had a rare burger. What a treat! Having to spoken to other patients at the transplant clinic, most of them are back to normal as far as diet and lifestyle. Their attitude (and mine) is that we didn't go through all of this to live like monks. I'm more careful that before my transplant, but less careful than the first few months afterwords.
Posted 5/11/2011 5:13 PM (GMT 0)
David-why no grapefruit or its juice?
Posted 5/11/2011 6:03 PM (GMT 0)
They told us to consider Mike "allergic" to grapegruit and its juice. That it breaks down the anti rejection meds in some chemically mysterious way. but oranges and OJ and lemon stuff are ok?

Dont they say the same about grapefruit and penicillin?

And there is that grapefruit diet that works on the theory that some stuff doesn't digest (fats) when you eat enough grapefruit!

Thanks folks for chiming in.

I feel like they have set us on our own with only 50% of the information we need.


They told us about the grapefruit, lifting, no driving for a while (not new for us!), no pet waste, gardening, but didn't talk about raw foods.

I am curious about the beef...whether that is on the NO list. He had such a time with his digestion before trasplant if he had a once a month "treat"...three bites of a burger or steak...that he quit it entirely.

Carol
Posted 5/11/2011 6:39 PM (GMT 0)
Emma - thanks for adding the information.

Ron is diabetic (has been for years) - once home he went on a regular diet - we watched his carbs and sugar due to the diabetes. All those diet restrictions pre-transplant (unless otherwise specified by your doctor) - have been lifted.

Ron didn't have much of an appetite when he first came home - he would tell me what he thought sounded good - I would fix it and he'd eat just a few bites (that's okay - I was just happy he was eating). We were told Ron should drink 3 ensures a day until his appetite came back. I pushed the protein and vegetables - mostly healthy protein (chicken and turkey).

I fed him whenever he was hungry - he ate 6-7 small meals a day for a couple of weeks.....he quickly found his way back to eating.

The doctors told us - at first the patients have trouble putting weight on - then somewhere down the road - they would tell the patients they needed to lose some weight....we all love to eat!

Grapefruit is a no-no due to anti-rejection drugs.

Ron wipes his office down every couple of days with Lysol wipes - he washes his hands constantly and uses the hand sanitizer. He doesn't shake hands, hug or kiss anyone (other than me) - unless he feels absolutely pressed to. At home, he wipes down the remote, refrig handle, sink handles, door knobs..........etc. several times a week.

Also, we were told going to the movie theatre wasn't a good idea - theatres recirculate the air - so we joined Netflix....and eat our homemade popcorn.

So much to learn at first - then it becomes routine.

Pam
Posted 5/11/2011 9:09 PM (GMT 0)

Emma, thanks for copying and pasting that information.

I know grapefruit is also a no-no on certain antibiotics and MAO inhibitors.  I love red grapefruit...guess I'll get my fill now.  Same with buffets.  There are a couple that I like because they have a steady turnover of customers and fresh food is constantly being brought out.

I've also heard that transplant patients shouldn't eat shellfish.  Or is that just the raw ones, like oysters?  I don't do raw, anyway.

I'm kind of a germaphobe, anyway.  I carry a small bottle of hand sanitizer with me.  I noticed that Mayo has it everywhere, available to everyone.  Here at my apt. complex they have it next to the elevators.  Wal-Mart also has wipes right next to the doors.  Sure makes life easier.  I use Lysol or Chlorox wipes at home to clean the door handles, toilet and seat, remotes, and the phones.

However, I agree with you David about living your life once you get past the initial months of recovery.  Use good judgment, but loosen up a little.

Hugs,

Connie

Posted 5/11/2011 10:28 PM (GMT 0)
I have read that raw shellfish-oysters and also undercooked shrimp and scallops should not be consumed by cirrhosis patients. Again, due to danger of infection.
Posted 5/12/2011 12:09 AM (GMT 0)
Raw meat, such as steak tartare, or carpaccio aren't allowed and the same goes for raw fish and shellfish. The reason for not eating at buffets or salad bars is due to the possibility of others diners coughing or sneezing over the food. One of my infectious disease docs put it like this: you can contaminate yourself as easily as a stranger could. The main point is to be able to control what you eat. Restaurants make it impossible for you to do that. At MGH, in the cafeteria the section where the meat is, is called the Well Done Cafe. I stay away from that.
Posted 5/12/2011 1:17 AM (GMT 0)
Hello to all,
I missed an email from Dr V yesterday , He has made an appointment to go to RPA for introduction to Liver Transplant ,not evaluation .Dr V's fixed that all up. How do I get to speak to other transplant patients ,David has a fantastic knowledge,but we are all different.From what I read to get to the transplant forum I have to have had one David ??? This seems unfair ,I'd like views from all on that site you go on Dave but how do I get there as I have no clue whatsoever .Can you sign me in ???
Mick
Posted 5/12/2011 1:48 AM (GMT 0)

Michael, I have been on Transplant Cafe looking around.  I don't think I signed up.  But I don't think you have to be post-transplant to join.  The fact that you are being considered for transplant should be enough.

Hugs,

Connie

Posted 5/12/2011 2:55 AM (GMT 0)
The Transplant Cafe has different forums like Healing Well...some for pre, some for post, some for various organs, not just liver, and some for caregivers...(and some for joking around).

I'm trying to post more about Mike's transplant since there are a few active pre transplant folks here and I really really appreciated the information from David and Pam/Ron in recent months....they had recently been through it.
Posted 5/12/2011 3:55 AM (GMT 0)
I didn't know that about grapefruits and anti-rejection drugs...just statins to lower cholesterol.  The immunosuppressants I've been on (not for transplant, so lower doses) didn't have any grapefruit warnings so maybe it's the other meds.

Re the raw shellfish, fish...anything from the sea...too much risk for contracting Vibrio (bacteria).  A normal person can rid themselves of it but immunosuppressed can get really sick from it.

All the warnings are because transplant patients and the immunosuppressed are more susceptible to all bacteria and viruses, that's why the more neurotic cleanliness and cooked foods.

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