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Author Topic: Something that has really been on my mind...any advice is appreciated.  (Read 17079 times)
sammiejo23
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« on: February 20, 2011, 02:14:28 AM »

I'm not sure if this is the right place to post this (sorry mods if it's not!), but I'm going to go ahead. The other day I was sitting in dialysis and I started crying during an evaluation thing. My nurse had mentioned that he was happy to hear that I'd be going back to college but that I should know that there won't be anymore partying. I know that I'm only 19. And I know that's illegal for me to drink, but let's face it, it's college. It happens. It's hard to be the odd one out not having the same kind of fun as everyone else. Anyways, I got to thinking and realized that my 21st birthday is pretty much already ruined before it even gets here, and I was wondering (I would ask my doctor, but we don't get along well, and I don't feel comfortable asking her this for fear of how she might judge me) would an occasional wild night out be harmful? While I'm on dialysis, at least? It's really been bothering me, and I just don't know the answer. It's not like I wanna go out and be an alcoholic or anything.  It wouldn't be a habit. But I just want to know that if it happened, would it be okay?  ???
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« Reply #1 on: February 20, 2011, 02:25:04 AM »


Wow, that seems like a pretty insensitive comment from the nurse. What 19 year old wants to hear that they cannot do normal teen/young adult stuff?? Especially when you're dealing with a life changing illness? I am not a patient, but my daughter has been on dialysis since she was 18 and she now has a transplant. My advice to her was, everything in moderation. That's the same thing I said to her "normal" siblings - if you take care of yourself and don't overdo stuff, whether it's drinking or pot or driving fast or eating fastfood or drinking sugar sodas or staying out late every night or sex --- you will be ok. Yes, you may have fluid restrictions, it's important, but I don't think a few drinks once in a while will do you in. I am sure others who have experience will add their perspective, but as a mom I would say - you have to live your life.  :cuddle;
 
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« Reply #2 on: February 20, 2011, 06:54:39 AM »

Hubby has been on dialysis for almost 14 years and he usually has at least one beer a day - no more than 2 just because of the amount of fluid. Ask your doctor or dietician for advice.
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« Reply #3 on: February 20, 2011, 07:31:38 AM »

well i was on dialysis at 29 and although i don't drink that much i would have the odd night out where i would have a few glasses of wine (and being such a lightweight would be pretty pissed!)

my dialysis nurse never thought this was a problem. i would always get a big glass of water with the wine.

to be honest i don't see why you cant have the odd night out where you can have two or three drinks, but im not a doc or nurse so that's only my opinion. when i was 19 i would go drinking with friends (we can drink at 18 here in the uk) and it is hard being the odd one out and i really do understand what you mean. at 19 you want a few nights out with your friends where you can have a couple of drinks and have fun and i reckon as long as you only do it occasionally and you are doing everything else right im sure it will be fine.

sending best wishes to you and hope you get some positive replies  :cuddle;

lou x x x
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Henry P Snicklesnorter
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« Reply #4 on: February 20, 2011, 08:06:32 AM »

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« Reply #5 on: February 20, 2011, 08:36:18 AM »

Follow your heart, but use thought for down the road. Don't worry about not being with the " in" crowd.
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« Reply #6 on: February 20, 2011, 11:21:33 AM »

I don't think a rare night of drinking would hurt. But remember not only will you have to deal with the hangover, but also with the extra fluid and subsequent dialysis. Before you drink, make sure that it won't conflict with any of the meds you are taking--that could be life threatening.
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« Reply #7 on: February 20, 2011, 02:24:41 PM »

Wow, someone kick that nurse in the shins, please!
A. - A drink or two shouldn't hurt you, unless, as has been pointed out, you are on a med that reacts with it.  You can look up side effects for each med, or even ask your pharmacist.  You might be better off doing a couple of shots instead of drinking multiple big drinks or bottles of beer - less fluid that way.  Just remember that getting drunk is a fast way to forget your fluid restrictions.  A bit of a buzz, as long as you don't end up guzzling half a keg of beer because of it, is another thing entirely.
B. - You can be at the party without getting stone cold drunk, or for that matter, drinking at all.  I've yet to have any of my friends object to my offering my services as designated driver/friend who ensures you aren't "beer goggling" your way into a bad mistake with someone you wouldn't have looked at twice while sober.  It can actually be rather entertaining to be the only sober one.  Especially if you have a camera with you.   >:D
C. - Dialysis is a treatment for a health problem, not a prison sentence.  You are allowed to go out and have fun!  This "no partying" advice is BS.  Do you have to have a bit more restraint than your healthy friends? Yes.  Do you have to refuse to go out, refuse to have a drink, and refuse to enjoy the things your friends want to do? No.
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« Reply #8 on: February 20, 2011, 02:49:28 PM »

It can actually be rather entertaining to be the only sober one.  Especially if you have a camera with you.   >:D

Jbeany, I love your attitude....  :rofl;
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« Reply #9 on: February 20, 2011, 05:05:08 PM »


Wow, that seems like a pretty insensitive comment from the nurse. What 19 year old wants to hear that they cannot do normal teen/young adult stuff?? Especially when you're dealing with a life changing illness? I am not a patient, but my daughter has been on dialysis since she was 18 and she now has a transplant. My advice to her was, everything in moderation. That's the same thing I said to her "normal" siblings - if you take care of yourself and don't overdo stuff, whether it's drinking or pot or driving fast or eating fastfood or drinking sugar sodas or staying out late every night or sex --- you will be ok. Yes, you may have fluid restrictions, it's important, but I don't think a few drinks once in a while will do you in. I am sure others who have experience will add their perspective, but as a mom I would say - you have to live your life.  :cuddle;

SammieJo,

In my opinion, in todays society it is considered normal to go out and party and perhaps get plastered, especially on your 21st. 
Many times, we dont like what our doctor tells us, but i believe in informed consent even if we do not like what we are being told.  Look at it from the doctors perspective, It is their job to inform us and let us know. It is up to us on if we take the information and listen.   
One reason that you should not drink excessive on dialysis is that we do not get rid of the alcohol as fast as somoene not on dialysis. It takes longer to wear off since it is in our system longer. Alsohol will also thin your blood and can affact medications you are taking. I dont think your doctor is trying to be mean, but rather point out the facts of drinking heavily on dialysis.
It is all about self control and knowing when to stop. It is hard during your teenage years because you want to be normal and do what your friends are doing.
One thing about being on dialysis, I have learned that you grow up much faster and realize what is important in life. This is ultimately your decision, but remember the word moderation and being in control.

///M3R
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« Reply #10 on: February 20, 2011, 05:30:36 PM »


Wow, that seems like a pretty insensitive comment from the nurse. What 19 year old wants to hear that they cannot do normal teen/young adult stuff?? Especially when you're dealing with a life changing illness? I am not a patient, but my daughter has been on dialysis since she was 18 and she now has a transplant. My advice to her was, everything in moderation. That's the same thing I said to her "normal" siblings - if you take care of yourself and don't overdo stuff, whether it's drinking or pot or driving fast or eating fastfood or drinking sugar sodas or staying out late every night or sex --- you will be ok. Yes, you may have fluid restrictions, it's important, but I don't think a few drinks once in a while will do you in. I am sure others who have experience will add their perspective, but as a mom I would say - you have to live your life.  :cuddle;

SammieJo,

In my opinion, in todays society it is considered normal to go out and party and perhaps get plastered, especially on your 21st. 
Many times, we dont like what our doctor tells us, but i believe in informed consent even if we do not like what we are being told.  Look at it from the doctors perspective, It is their job to inform us and let us know. It is up to us on if we take the information and listen.   
One reason that you should not drink excessive on dialysis is that we do not get rid of the alcohol as fast as somoene not on dialysis. It takes longer to wear off since it is in our system longer. Alsohol will also thin your blood and can affact medications you are taking. I dont think your doctor is trying to be mean, but rather point out the facts of drinking heavily on dialysis.
It is all about self control and knowing when to stop. It is hard during your teenage years because you want to be normal and do what your friends are doing.
One thing about being on dialysis, I have learned that you grow up much faster and realize what is important in life. This is ultimately your decision, but remember the word moderation and being in control.

///M3R

I believe it was a nurse, not a doctor, who gave the medical advice.
Self control is great advice. But is it realistic?
I quit drinking over 30 years ago so I am not encouraging drinking. I stopped because I could not predict the outcome, and let's just say it was a good decision.
Young people learn, not by what we tell them, but by their experiences.
Sammiejo, I hope you can focus on the big picture of life, that you'll have lots of choices and experiences and you'll have a good medical team that will guide you through the ups and downs.
 :waving;
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« Reply #11 on: February 20, 2011, 07:26:39 PM »

Sam,

First of all I think what that nurse meant was "don't go out and chug steins of beer!" type partying.

As others have said, you do NOT have to give up the odd drink (and yes, we understand, it's college-drinking happens :) GIRLS GONE WILD!!!! Oh wait, that's something else  >:D :rofl;). When I was on D I would have a social drink and just account for it within my fluid restriction.

In terms of your 21st, or any other time when you feel like you will need to, or want to, drink a little more, then you just need to plan for it - either drink little beforehand, so you have more allowance, or even perhaps organise an extra D session just to remove fluid say after the 21st etc. I have found that D units (well ok mine anyway) could be flexible in that sort of thing - if it's not an every week thing but something special like a birthday etc and you want to have a few drinks.. damnit yes... then take the fluid off next day or whatever.

Remember the key - dialysis is about supporting your life, not about killing it off.

Having said that, NOT drinking to excess and then doing stupid things has also been good for me!  :rofl; A couple of dinks to get a buzz can be good, but honestly since my transplant I actually haven't had an urge to drink, but I did have ONE beer (oh my!) with lunch last week and next week to celebrate my 3 month anniversary we will indulge in a bottle of Dom which my father bought and is dying to try  :rofl; :beer1;

I often found when watching those who did drink a lot doing stupid things I felt kind of good that I was restricted, and you can still go to parties and stuff, and "nurse" a mixed drink (remember spirits=less volume/more bang).

Another thing is that I found when I was on D that, prob due to the toxins or whatever in the system, that it took far LESS alcohol to give me a buzz. I could have 2 shots of vodka and be anyone's ! (oh wait, I don't really need a drink for that !  :rofl; :rofl;).

Anyway do not write off your 21st - who knows what your situation could be by then?! You can still have a special time - even if you can't chug till you puke remember it's about who you're with and what you're celebrating isn't it?

Just my two cents.
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« Reply #12 on: February 20, 2011, 09:47:13 PM »

Thank you to all of you for your responses, and for being so optimistic. I didn't think so many people would respond, but I do very much appreciate it, and I feel a lot better. :) I know this isn't the most important thing in life, it's just something that had been on my mind that I wanted some advice on, haha. (It had stopped bugging me for a bit until I was visiting my friends on campus last week, and it just kind of brought the subject up). Rest assured, I definitely see the bigger picture in life though, and I have got my priorities well organized, believe me. This is only a small thing on my list, but sometimes it's the little thing that eat at you the most. At the moment I'm not on any medication at all, but there's always the possibility that that could change, and I'm sure that in time I'll learn to open up to my current doctor. And if not, I suppose I could always get in touch with the medical team near my school that I was working with before I came home. They were better to me anyways, and I'm sure they'd be more than happy to talk with me. Anywho, thanks again for the advice guys! :) Definitely helped me out. You're all so great!  :thx;
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« Reply #13 on: February 20, 2011, 09:53:14 PM »

That's what we're here for - the big questions and the small (I'm kinda small minded, so I work better with the smaller questions anyway  :rofl;). If it's worrying you always best to get it off your chest and see what the general consensus is. It can't help to get more opinions on a situation. :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
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27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #14 on: February 21, 2011, 12:16:31 AM »

Maybe it's because I live in the UK rather than the US, but I have no restriction on the amount of alcohol I drink. Subject of course to liquid limits.

So I don't drink more than half a (UK) pint of beer; I drink spirits instead. Not that I want to get blattered often.

Alcohol is metabolised by the liver and the kidneys arn't involved. So provided your liver's OK then there's no reason not to consume as much alcohol as a normal peson provided you do so within your liquid constraints.
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« Reply #15 on: February 21, 2011, 12:38:19 AM »

And, besides all of that great advice, who is to say that you wont have a new kidney by the time you are 21???? Then, you could really celebrate.
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« Reply #16 on: February 21, 2011, 12:56:20 AM »



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« Reply #17 on: February 21, 2011, 02:37:29 AM »

For me the issue was not so much drinking alcohol (although some, such as beer, do contain potassium - I think.. it's one of the P's)... but more the fluid volume gained that was an issue for me being on fluid restrictions, so when I did drink it would be a spirit since a 30ml shot of vodka, or even vodka and orange or whatever would still be less than a pot (what we call a pot, which I think is around 300ml) of beer - it was all about the volume rather than the alcohol. Everyone's different of course. If you don't have fluid restrictions then I guess go crazy?!! lol

We had certainly never been told that alcohol consumption in relation to dialysis was bad in anything other than a fluid sort of way. Heck I was naughty and did take a hip flask TO dialysis a few times when a big footy game was on. Some of the nurses tsk tsk'd me but the other senior ones laughed and just adjusted for what I drank so it would come off when I did (plus I understand the actual process of dialysis leaches it out so in theory you wouldn't get too drink?? lol). I think they found it amusing that I actually dared to take vodka into dialysis. I only did it a few times over the years before anyone thinks I went in there to get drunk every time !!  :rofl;
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3/1993: Diagnosed with Kidney Failure (FSGS)
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27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #18 on: February 22, 2011, 05:01:50 AM »

Knowing your footy team, Richard, no one could criticize you for getting blotto every time they play!
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« Reply #19 on: February 22, 2011, 05:10:11 AM »

 >:D :boxing; >:D :boxing;

The last time was actually the Grand Final -- both of them!!  :rofl;

You can draw your own conclusions as to why I felt I needed a drink!!!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #20 on: February 22, 2011, 03:38:41 PM »

Hahaha, Richard, Richard, do you really think that's the most appropriate story to share with youngin's on here? You don't want to encourage bad habits now.
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« Reply #21 on: February 22, 2011, 05:25:12 PM »

Hahaha, Richard, Richard, do you really think that's the most appropriate story to share with youngin's on here? You don't want to encourage bad habits now.

who me? encourage bad habits? *innocent look*

It was all in fun, and it was only a SMALL hip flask :) Like I said some of the nurses were like "You can't do that!" - but neither did they take the drink from me (easy enough to do given I'm tied to the machine!). The others just sort of laughed - I think because they knew *me* - that I'm not a raging drunk, and that mostly it was in good spirits (pun intended).. and secretly i think they wanted to see me a bit buzzed to give them a laugh (it did!). I can get a bit.. excited... watching football.  :rofl; :rofl; :rofl; (reminds me of an ex-gf who used to enjoy sitting with me watching my team play - not because she gave a crap about football or my team, but she said she used to love watching my reactions/stress/frustration etc because it was very amusing for me...  :rofl; :rofl; :rofl;)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #22 on: February 23, 2011, 12:46:34 AM »


Alcohol is metabolised by the liver and the kidneys arn't involved.

Good for you but I will differ from you on this one as well. Alcohol affects every single sell and every single organ in your body. It can dehydrate you and it can affect your blood. (no matter how little or how much you drink)  A hangover is actually dehidration in action, yes, it is hard to believe but it is true. The best cure for a hangover in a non-ESRD person is to drink lots and lots of water.  ;D

I don't know, but it has never had any attraction to me in the first place. So I don't miss it.... it just never made any sence to me. Drinking to feel "funny" "happy" I am that way without any alcohol.  :rofl;

But I do agree that you must have fun in moderation just like everything else in life. You don't want to put you life in danger and make your 21st birthday your last. :beer1; 
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« Reply #23 on: May 18, 2011, 08:29:27 PM »

When I first started my dialysis training, my dietitian at the hospital offered me a possible couple of vodka drinks. Stolichnaya vodka contains no fat, sodium, cholesterol or sugar. It also contains no potassium or protein. That's more or less true for vodkas across the board, generally speaking... Flavored ones, I don't know.

That's not to say go pound a fifth back with no cares. A couple shots or mixed drinks wouldn't be horrible every now and then, but I'm a lightweight since stopping drinking at 21 for the most part. Random beer here and there since 2001. But that's my 2 cents.
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« Reply #24 on: May 21, 2011, 07:11:48 AM »

shots of clear spirits were always preferred while on D - both for the lesser impact on fluid intake and for the lack of PO4 and K thatg other stuff (eg: beer) can have.

I did notice when I was on dialysis that alcohol had a bigger impact on me - a drink or two and I was definitely tipsy. I'm typing this after 4 beers and think I'm doing ok :) oh Danny I love you!!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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