I would be quite interested to know what your hospital say re post transplant rules

[tfc5]

Hi, I would be interested to hear what rules your hospital give post transplant as it differs so much. Are you advised to boil your water before drinking it for the first 3 months, are you told to avoid public places for a certain period, are you advised to avoid anything else?

[Dogsbody]

I am not a transplant patient my self, but I will make enquires and post a response at a later date.

[NKFCEO]

The NKF has really good information on its "Medical Information" pages on the NKF website. The section you should read is found at

kidney.org.uk/Medical-Info/...

Patients also re;ay their experiences there.

[mickw]

When i had my Transplant, i was told to:

not go in places with to many people,

Boil water for awhile,

not to eat yogurts,

don`t eat stilton cheese, brie cheese, oh i love stilton too, (before my transplant),

hope this helps,

[tfc5]

Thanks Mick

[mrspick]

Hi I have just contacted the transpalnt nurse in my area and she says patients are given a booklet at St James after their transplant but she has advised no shell fish and no un pasterised soft cheese. The dietician is on annual leave but I will speak to her next week and see if there is anything she can add.

[chelseagirl]

Hi have had my transplant for 21 years. I was never given information to avoid crowded places, or to avoid any foods ect..

[BAGS]

Hi

I had my transplant a year ago, and was given advice re avoiding crowded places, washing my hands after gardening or stroking the dog, etc -but then the specialist nurse went on to say that amongst her patients she had a farmer and a slaughterman, and they managed fine, the implication being that it's not really that significant a risk. There is muddle about eating yogurt, for in some places it says avoid the probiotic ones, and in others it says avoid live yogurts. I thought all yogurt was live, and that the issue is really about avoiding products (yogurt, cheese etc) that has been made from unpasteurised milk.

Perhaps I have not understood this fully, but some good, authoritative, detailed and accurate advice would be good.

[tfc5]

its interesting how each unit does seem to vary in what they say

[transplant1]

Hi,

I had my transplant 6yrs 7mths ago.and was told NOT to eat grapefruit as it is definitely not compatible with the immunosuppresants I take (Prograf & MMF). The combination can make you very ill. I was told to eat only one biscuit at any time during the dayy because too much sugar could start diabetes, eat only a handful of peanuts during one day. Was also told to keep my 'little black book' up todate recording date, b/p, weight, medication etc + any questions I may have had (and I am still asking today....its about self help) at my regular check-ups and to get yearly skin cancer tests. I wanted to take a Degree which I had previously put on hold prior to being in Chronic Renal Failure followed by my miraculous transplant from a cadaveric donor. 3 months after transplant I asked my Renal Sister what she thought about me taking the Degree starting in April 2006 (I was born in 1944). I will never forget her answer: 'Live your life.' I graduated in July 2008. Today is the first day of the rest of my life and I intend to enjoy it. Best wishes to everyone.

[tfc5 in reply to transplant1]

Hi

Congratulations on the degree! Yes grapefruit is very important to avoid with cyclosporin (though I hate it anyway).

It is very good to keep a book of everything as sometimes it is hard to remember what you need to bring up at each appnt.

[maturestudent in reply to transplant1]

Thanks for sharing your inspiring story - congratulations on your degree!

[Pandle]

I had my transplant nearly 25 years ago - like chelseagirl I was given precious little advice about anything.

I agree that some standard, authoritative advice would be really useful. Perhaps based on actual evidence rather than theoretical risks - has anyone ever been made ill by pasteurised yoghurt bought in a supermarket?

What's the rationale for the peanut restriction mentioned by 'transplant'? Not heard that one before.

[mrspick]

I have just had a letter from dietician about dietary recommendations following a transplant.

Foods to avoid include; unpasteurised milk, live or bio yogurts probiotic drinks,any unpasteurised cheese soft cheese-camembert and brie,blue veined cheese e.g. stilton,raw or lightly cooked eggs or products made from raw eggs,undercooked meat/poultry, rotisserie chickens,pate loose purchased fish and shellfish and fish roe, unwashed friut and veg, salad counters, pre packed salads and lettuce, still bottled water or water from a fresh spring.

An enzyme found in grapefruit can interact with your meds and therfore should be avoided.

This is all amazing as the only thing my hubby can recall from his transplant 12 years ago is the grapefruit bit!!!!!

He has always eaten stilton.

This letter contains 12 pages of advice mainly about diet and excercise and it is given out by St James Leeds.

[tfc5]

Very interesting as I have been eating Rotisserie chicken, pate, fish purchased over the counter, i never wash fruit and veg, salad counters, prepacked salads and water. I wonder if this is one for the helpline? Was this advice for always Mrs Pick or just the first three months

[mrspick]

Have been looking in depth at the info and it says 'Your immunosuppressive medications lower your resistance to infections generally. It is important you take care in food selection, preperation and storage in order that you are not at risk from food borne infections.' It then goes on to say 'you are most at risk during the first six months following your transplant'

[FairyPants]

Hi, I had my transplant in feb 2005 and was basically told that I was now on a "pregnancy" diet. Don't eat anything unpasterised etc. This is mainly because of the risk of s & D as that can cause major dehydration. Grapefriut is definately a massive thing to avoid as the reaction with any long term meds is bad let alone immunosuppressants, (I'm Taking Prograf an azathiapine). I was also told to avoid high potassium foods, such as bananas and chocolate, although u can have them in small doses. I was never told to avoid busy places or anything but to be honest I am very ott with cleanliness anyway. If anyone lives near by u may well have seen me anti bac wiping my trolley when I go food shopping and I seem to have a never ending supply of anti bacterial handwash wherever i go!! The best advice I was given, was just use common sense. Never put urself in harms way if u know the situation could be detrimental to ur health. I find it very difficult to protect myself from all germs since having my little boy. I dont want my "funny ways" impacting on him so i have to let him be a child but also know the risks of coming into contact with germs from his friends at school. I have come into contact with chicken pox, german measles and other "wonderful" illnesses a fair few times now. The only thing I would say is never take the risk with food. Dont be embarrased about asking restarants etc if their mayo is pasturised etc or coleslaw is homemade. I made the mistake over eating something that had been in my freezer for longer than recommended and was in hospital for 2 weeks following severe sickness.

But all I will say after my essay is enjoy!! We have all been given a second chance so grab it with both hands and go for it. Much love to u all xx

[Michael1]

I was advised not to eat grapefruit and that was about it. In the early days I had an episode of food-poisoning due to not re-heating food properly and went to hospital as my BP fell quite dramatically as I became quite de-hydrated (CR went up a few hundred points, too). Now I take particular care in the food / germs area - I avoid re-heated meet and I check pretty much everything I cook with a small food thermometer. We use anti-bacterial spray on the kitchen and I normally keep some hand gel in the car and in my bag. I am extra careful when I travel - I have been to China 4 times since I had a transplant - I avoid cheap looking restaurants and street food (applies in the UK too). What has put me at ease is my consultant saying 'next time, take some immodium' ... The typical advice is never to take any tablets (even from the GP) unless you run it past the clinic - but this advice has given me the reassurance I need to be more than an hour away from the clinic!

p.s. that bit about immodium was said to me only - others should confirm with their dr.

[Applecrumble]

I think you need to b sensible. Don't eat anything out of date! make sure you wash your hands before you eat, especially when you have been out in public places. I had my transplant 11 years ago, and was told to avoid crowded places for the first 6 months, and not to eat grapefruit as it interferes with meds. However I have eaten yoghurt the whole time, they even gave it to me in the hospital, i eat mayo and even pate, i have never had a problem. I think you should always go with what your nurse will advise as they no you and your condition. Obviously you will need to be more strict straight after a transplant as they are still working out your dosage of your meds and imuno suppression, however when this is all settled they may let you broaden your diet.

[Mungo]

Hi, I had my transplant 5 weeks ago. No mention of boiling water. They did give me a booklet, which included the advice to keep away from coughs and colds. Also no live yoghurts and blue cheese, Brrie, Camembert etc. (risk of listeria). So far so good....

[2012kowboy]

Hi. I had my transplant at the Churchill in oxford, I was not told to boil my water but I was told to avoid places such as cinemas and theaters, I was also told not to eat Chinese or indian takeaway, rare steak (which I love!) or blue cheese (which I love even more!). also stay away from anyone with a cold or infection. it seems rules do differ slightly between hospitals but are pretty similar all over, I had my transplant in june 2012 (on fathers day, which was a lovely present but not as nice as the one from my daughter!) and so far so good, the first 6 months are the most vital, after that you can relaxe the rules slightly. hope this helps, gary