Activities after a transplant

[Chris]

What I was told, well in our binder we are given on discharge is beer 1 or 2 times a month and no hard straight alcohol. I'll have a beer when out once in a blue moon. I don't drink evry month, but usually in Feb, April, and November and on the rare ocassion I go out to eat. I didn't drink while on dialysis, but use to go out every Thursday or Friday with coworkers afterwork and play pool, darts, and b**ch about the manager brown nosing the boss 

[Python]

Richard and Lola, thanks, you both really seem to understand from where I was speaking.

Richard, your 'sex in hot tubs' line had me laughing aloud. And just a few hours ago I was volunteering at the crisis line, talking to a suicidal schizophrenic, so it was much needed. You are such a doll! You'll do fabulously with that transplant WHEN it comes your way. 

Lola, I agree - I would not change all of the 'less-than-ideal' things I did. When I first told my husband (boyfriend at the time) that I had had a transplant, I was lifting a pint of Carlings at a hotel in Coventry, England. His first question was "Should you be drinking - excuse my ignorance..." (so very charming!) and I basically said yes, I can drink, but even if I had been told I couldn't ever drink, I am still going to live as closely to what feels normal to me as possible. 

Being so young when I had my transplant, I really had no voice for the first 10 years or so, and doctors blamed me for everything. My parents were even worse - abusive, hateful, and somehow both suffocating and neglectful simultaneously. (If we were still on speaking terms, I might have asked how they pulled those last two off! )

My husband does not always understand why I am so militant when it comes to how I allow medical staff to treat me, talk to me, or talk about me. For example, on my first call to Northwestern, the clinical coordinator took my health history and when I mentioned having this first transplant for 33 years, she said "Good girl, you've been taking care of your kidney." I had to restrain myself from blurting out what I wanted to say: First of all, 'girl' was 20 years ago, and secondly and more importantly, as an old professor of mine loved to say "You can do everything right and lose, you can do everything wrong and win."  My 'success' with my transplant has to do more with luck than anything, and I have no idea why it is so difficult for doctors to admit this. My gp believes much of my success can be linked to my refusal to adhere to my prescribed medication. He thinks the geniuses overmedicated me, and I am fully inclined to agree with him.

Hi Cariad.  Are you in the UK?

I agree with everything you say - and my son who was transplanted last December thinks exactly as you do.

The aim of a kidney transplant is for the obvious - not to die, but also so that the recipient can lead a normal life.  Reading some of the do's and don'ts across the pond, I couldn't help thinking "where's the normal life in that?"  Not supposed to do this or that?  Not supposed to do gardening?  For goodness sake.  I must admit I do wear gloves when gardening purely because I don't like the soil going underneath my fingernails and incase a sneaky stinging nettle sneaks out from between the flowers and gets me (revenge of the nettle I call it).  OK.  I don't have a transplant.  I do have a kidney disease, Alports Syndrome although, fortunately I haven't shown any signs apart from very minor ones.  Sadly, my son is the one who got the whole shebang as is usually the case with Alports, so he's the one with the transplant.

He just lives life like anyone else, although he is cautious about going out in the sun and won't go out without total sunblock on - which he's always had to do anyway as he's fair-skinned with blonde hair.  Again, common-sense.  He won't eat any food he thinks might be suspect in any way and washes his hands frequently, particularly before handling food or after using the toilet - which everyone should do anyway as part of their normal, everyday hygiene routine.  Other than that, he just goes about his business like anyone else does.

He has three cats of his own.  He cleans their litter box himself but always wears rubber gloves and washes his hands thoroughly afterwards.  We also have two German Shepherds.  I do the poop-scooping there because, like most men, he thinks it's a horrible job.  As I remind him, when you have kids and have changed nappies (diapers) thousands of times, poo is poo so it doesn't bother me.  I just follow the same hygiene principles.  We also keep pet snakes.

We have Swine Flu here at the moment and we think Ian might have had it.  He didn't use any medication (Tamiflu) although he was authorised to get it, he decided not to bother.  He just did the sensible thing, quarantined himself in his bedroom, kept drinking lots and took some paracetamol.  He's over the worst now and just left with a slightly stuffy nose and a bit of a cough.  He thinks he caught it on one of his hospital appointments as someone in the waiting room was coughing and sneezing.  That is the only illness he has had in the 9 months he's had his transplant.  He's been around people who have had the cold and not caught it himself so his immune system must still be working quite well.

I often think nowadays (this is in general, not related to kidney problems or people on immunosuppresants) that people are too clean, over-vaccinated and this is helping to destroy peoples' natural immunity, hence many people, especially children are going down with illnesses and diseases we'd never heard of 30 or 40 years ago.

When I was young, we never heard of diseases like E-Coli, yet food hygiene was, in comparison with today, virtually non-existant in some shops.  We went into a shop to buy biscuits (cookies), stuck your hand in a box, helped yourself, put them in a paper bag and got them weighed.  Probably dozens of other folk had one the same, and I'll bet some of their hygiene was very suspect, yet we didn't fall foul of such diseases, or at least there was very little of it about.

Same goes for allergies.  So many people are allergic to so many things these days.  Hardly heard of when I was young but then we didn't have sprays for cleaning that killed this bacteria or that bacteria.

Kids were hardier too.  They went outside and played.  Went out clean and came in filthy - healthy dirt my late mother used to call it, cringing at the pile of our clothes which she hand-washed as we didn't have a washing machine until I was about 10 years old.

We didn't have central heating either.  Just one open fire in the living room.  Our bedrooms in winter were sometimes freezing cold but the hot water bottle and the eiderdown quilt kept us warm and cosy.

Oh dear.  Now I'm getting nostalgic.  Think it's time I went to bed as it's 2.30am here and I've got work in the morning.

Nite everyone - or is it Morning everyone LOL.

[paris]

I just wanted to comment that you wrote a lovely post and I enjoyed reading every word, Python.  Very well stated.   

[okarol]

Just thought of something else not covered yet in this thread(I don't think anyway):

alcohol.

My understanding is that after transplant you can have a small amount of alcohol, but it's not encouraged. What have people found on this front? Or what have you been told?

I imagine it is mostly about interaction with the meds that would be the big problem.

I usually imagine a glass of wine/champ and maybe 2 of beer would be a limit for a session/night?? What does anyone else think or do?

I have never heard any restriction with alcoholic beverages. Of course, they usually recommend "everything in moderation" as they would with most people anyway.

[cariad]

Hi Python,

Sadly, not in the UK - the middle of the US. My husband's British (Welsh) though. We want to relocate to the UK, but have to get my next transplant behind us first. My husband turned down a UK job only last March, because I so want to participate in a clinical trial that they are offering at several centers in the US, but nowhere in the UK yet. Transplant should take place in October, and then we can plan our move for some time next autumn. 

Aren't some of these dos and don'ts ridiculous? The gardening one puzzles me, too. What exactly do they think you will encounter in a garden that won't end up in your vegetables anyway?

Oh, and the vaccines. Do not even get me started. My son had to get a vaccine for chicken pox. Then the state decided that one shot was not good enough, so now he has to get a booster. My other son caught actual chicken pox before he was old enough to be vaccinated. The doctors practically applauded. I was told that the vaccine doesn't come close in terms of creating lasting immunity. Um, did no one think this through? Chicken pox is really dangerous for adults! If the vaccine wears off then all of these people who might have contracted it as kids are now in danger of getting it when they are older. Also, there is now no chicken pox virus around to boost older people's immunity, so cases of shingles have skyrocketed.    Oh, and my gp says the next vaccine in the works is rotovirus. Rotovirus is hardly dangerous, and lasts all of 48 hours!   

I had cats for most of my life, and cleaned hundreds of litter trays. I did not even wear gloves - no one told me to do this. Of course I washed my hands thoroughly, but it never crossed my mind to do this because of the transplant. (Believe me, my father hated cats so passionately that if he had ever caught wind of the notion that they could be dangerous to me, those animals would have been banished, supposedly for my own good.)

As you can see, I agree with you completely. Thank you for adding your thoughts. All the best to you and your son! Your attitudes are delightful. 

[Chris]

Darn, I could have had a Whiskey Sour if I had mine in California 

[RichardMEL]

Python - great post!

I think a lot of it is part of this politically correct society we've turned into, and of course the very legal minded one (sue for anything). I wouldn't be surprised if a lot of the stated restrictions are more about covering their butts than anything else. For example, you go in the garden, cut yourself on a thorn and somehow get an infection and it causes problems.. well they say "We told you to not garden in our post transplant guidelines" - they're off the hook and you can't sue them.

The whole PC thing about over protecting the kids and all that it seems a bit much, but is understandable. Like Python said - when I was a kid we'd go out on Saturday morning not come home till tea time. Nobody really asked where we were. Nobody had phones or anything. If we got into strife we worked it out (or someone helped)... Those were great carefree days it seems (the 1970's for me) and now you just don't really see kids doing that sort of stuff. And the PC crowd would have you believe it's about stranger danger and all that, but tell me those types weren't around in the 70's? and before? Of course they were! Sometimes I think the children of today are missing out on a "real" childhood (but that is from my perspective perhaps living in the past) - sitting at home, closeted inside, playing computer games and watching TV.

I do understand some of the restrictions (eg: sun) because the reasons make sense, and others like washing hands etc are just common sense. I think that's the way to approach it. Live normally but be aware and *think* (like, oh, that food has been in the heating tray for hours.. probably a bit suspect).

Still when it all comes down to it - the restrictions/guidelines discussed here aren't that onerous.. compared to doing dialysis and all that... I definitely would prefer that lifestyle!

[Chris]

Well there is common sense about the alcohol too because  some of the meds are broken down in the liver and alcohol can affect that. But apparently grapefruit has more of a consequence than alcohol since a couple meds do state do not take with grapefruit juice. I agree with you RM on the to much political correctness crap. We need to wean out the herd of dumb

[kellyt]

I didn't read all the recent posts above so forgive me if I'm repeating, but I think another factor of the alcohol is dehydration.  Again, like everything else we've discussed, moderation and common sense seem to be the key.  If you have an alcoholic beverage follow it with a nice tall glass of water.  Don't allow yourself to get dehydrated.  That's hard on your little kidney.

[RichardMEL]

1 beer, 1 water.. I can handle that.

I'm licking my lips now just thinking about it!! *drool*

 

[sico]

I think my binge drinking days are well and truly over.
Some of my mates weren't to impressed when i told them this.
Last time i got pissed was October 25th 2008.
But i can tell you i don't miss the hangovers.

[RichardMEL]

mate these days I can have one and a half beers and feel a bit unsteady. I think the toxins and stuff amplify the effect!! Have a few vodkas and I'm really in trouble! 

[Python]

Cariad.  Whatever you do, don't come to the UK. This country has  been turned on it's head by the useless government we have at the present.  You're not safe to walk down the streets and if anyone gets arrested they get extremely lenient sentences.

Our NHS is in a mess too.  Filthy wards, uncaring and incompetent staff and superbugs infesting every area.  Then there's immigration from third world countries.  Unfortunately, the UK government operates an open door policy and puts our own people bottom of the queue for just about everything.

Thank God we've got a General Election next year so we can vote the so-and-so's out.

Also, we are in a recession, which according to the newspapers the other day, is worsening.  Our unemployment stands at the moment at 2.4 million - 1 in 6 is out of work.  Housing is difficult to get if you try renting from the Council or if you try to buy your own, horrendously expensive, not to mention a nasty piece of taxation we have called Council Tax.

We would dearly love to get out of this country, things have got so bad here.  This week my husband's take-home pay will be £130 (approx $260).  Straight away £95 has to come out of that for rent and Council Tax, so after gas and electricity it doesn't leave an awful lot.

I live fairly close to Wales - about and hour and a half away.

Now the subject of alcohol.  I enjoy the occasional glass of wine with a meal and that's it.  I can't be bothered with it.  I was a taxi driver for 5 years and saw people making complete idiots of themselves too many times but now, with all the binge drinking going on here, many people have stopped going into the town centre of an evening as they risk being beaten up by drunken thugs.

My son doesn't drink (nor does my daughter).  He got put off drink when he was about 13 years old (pre kidney failure).  We went to my friend's daughter's wedding.  It was quite a big affair and at the reception my son kept disappearing in the crowd.  Eventually he reappeared - with blood streaming down his forehead. Had an argument with a tree branch (showing off to the girls more like) and the tree won.

Later, he disappeared again and I spotted him, someone else's alcopop in one hand, other hand on hip, looking like a mini man-about-town, chatting up a young lady.  He got the "Come here - NOW" sign from me and was told not to leave our table again the rest of the evening (which, by this time was nearly over).  He found out the hard way about alcohol when he had the mummy and daddy of hangovers which lasted a couple of days, not to mention a cut forehead (he still has the scar).  He learned a valuable lesson and to this day has hated alcohol.  He won't even have a glass of wine with the Christmas meal.  He prefers a cup of tea to anything.  Me I love my coffee.

He hasn't seen drinking in our family as my husband seldom drinks either.  His ex-wife was an alcoholic so he's seen first hand the damage it can do and prefers to stay away from it.

The one vice my son and I share is we both smoke.

On the subject of grapefruit (yuk), it would seem it interferes with quite a lot of different medication, not just immunosuppressants. 

Must admit we're not lovers of fruit - but love our veg