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gothiclovemonkey
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« on: July 18, 2010, 10:02:03 AM »

Ok, i noticed a post from a while back about drug use. I want to redo the topic, because someone asked me about it, and i didnt know the answers.
I know that its illegal and there are risks and benifits to smoking pot, but i really am wondering what exactly are the health risks as far as kidney failure is concerned. And smoking cigs? drinking alcohol?  Obvious reasons im sure we all know  :P I wonder if they DIRECTLY effect the kidneys? (I know high blood pressure does... Which smoking increase bp? i think....)
And i also think its pretty weird that drinking alcohol is acceptable to the doctors giving transplants, but telling me i cant have one because IM TOO FAT is pretty ridiculous  :banghead; Yes, lets be an alcoholic and get a new kidney, but if ur a cow.... your out of luck. Sorry about the rant there.... but really? I was healthy even though ive always been a big girl. The only problems i have are fsgs and mental problems hehe
Anyone know?
Im not posting this because i want to start a debate on whether or not you should or to start anything. I feel that it is something people may need to know, in case they do partake in drugs. It may save a life, or make one better  ;D

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jbeany
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« Reply #1 on: July 18, 2010, 12:50:02 PM »

I don't think pot offers any more particular risk to a dialysis patient than to a healthy person.  The big issue with it is that if it shows up on a drug test, the transplant teams will likely not accept you as a candidate.  Pot can do really terrible things to someone on immunosuppresants, and can contain a mold that may destroy a grafted organ.  With transplant ready organs so scarce, they are loath to give one to someone who might destroy theirs for a momentary buzz.

The weight issue is similar.  The higher the patient's weight, the greater the risk of complications.  They want those with the best chance of getting the most years from a transplant to get the organs.  Weight limits also vary from hospital to hospital and state to state.  Where I'm at in Michigan, such a large percentage of the state is overweight that there are much lower weight restrictions on who gets on the list.  My doc told me if they only put people with normal BMI's on Michigan's list, there wouldn't be anyone on it!

Transplant docs do look at the volume of alcohol use.  If you are an alcoholic, you don't qualify either.  Moderate consumption isn't really an issue with transplant meds or transplant success. 

The cigarettes are all about the cancer risk.  Transplant drugs seriously increase your risk of cancer.  Adding smoking to that risk is adding gasoline to a bonfire.

It comes down to playing by their rules if you want in the game.  When you get on the list, you sign papers giving them permission to randomly test your monthly blood work for anything they feel like testing for, not just antibody levels.

If you don't qualify for the transplant for other reasons, and pot smoking is helping with the nausea or stress of your illness, then I think you should do what works for you.  Just don't get caught!  ::)
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RichardMEL
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« Reply #2 on: July 18, 2010, 08:12:03 PM »

Just on alcohol. It's long been my understanding that post-transplant you really have to pretty much limit alcohol use - certainly no hard spirits - because of interactions with the meds. I believe a beer or two is OK, but anythin much more can cause problems and it's discouraged. I think for that reason if you had a serious alcohol issue prior to transplant they'd discourage a tx on those grounds because contininuing heavy drinking post-tx could destroy the transplant quickly - and thus a wasted scarce organ.

I'm in too minds on the whole thing(ie: drugs). I mean from one point of view who are "they" to tell someone to not do drugs, drink, smoke etc - it's their body and their right to do what they like with it. Unfortunately the issue comes in when you're talking about the amazing gift of a donor organ and everyone wants the best chances for success with that organ. I can definitely see both sides to it. One of those moral/ethical issues that there really can never be any "right" answer to.

About six months ago this whole issue was brought to a head here with the case of a woman who got a liver transplant, and she continued to do drugs afterwards, and the transplant quickly failed; the docs then refused to put her back on the tx list because of the risk that she'd just do the same thing, and the organ would be wasted (http://www.abc.net.au/news/stories/2010/02/25/2829765.htm). I believe she since went to Singapore where apparently they would give her a liver. Ah, I see she had the transplant there, but sadly died soon afterwards: http://www.abc.net.au/news/stories/2010/04/01/2862634.htm
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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!
cariad
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« Reply #3 on: July 18, 2010, 09:21:31 PM »

GLM, I hear you on the weight issue. I don't know why transplant doctors insist on sticking to these antiquated, rigid and arbitrary rules surrounding weight. The research on weight and transplant, scarce as it is, does not support this in the least. Even the CDC is now (quietly) saying that people who are in the overweight category have a longer lifespan as a group than people in the so-called healthy category. People who are underweight have increased mortality with transplant, but has anyone ever heard of someone being denied a spot on the list for being too thin? I certainly have not, and I was one of those people who was in the underweight category for all of my evals. I may have mentioned this before, but the nutritionist at Cedars actually wrote in my eval that "although [cariad] is 13% underweight, this indicates that she will be less likely to face weight gain after transplant". ??? I remember this bizarre part of the eval vividly, because she asked me what I had to eat the day before. I told her about breakfast and lunch and said I was too ill to have dinner. So the crazy lady MADE UP something that I supposedly had for dinner. (At least she chose something vegetarian for that extra touch of believability.)

One of the reasons that I get so worked up about this is because the diet industry is a multi-billion dollar one, but everyone seems to ignore that. Even the beauty industry is picked on now and then for making women especially feel like dirt constantly. Somehow, the diet industry has convinced everyone, including doctors, that extra weight automatically means unhealthy. Study after study has shown that weight is largely genetic and that diets do not work and often, in a classic bit of irony, cause weight gain.

Drinking alcohol is fine in moderation, just like for the rest of the world. Richard, did they really tell you no hard spirits after transplant? I wonder why. No one has given me any alcohol talk one way or the other, and I know that all my little transplant book said from my first was that standard moderation refrain. Alcohol is alcohol, so I would say that a gin and tonic is not going to do you any more harm than a beer or a glass of wine.

If you are an alcoholic or drug user, they should give you the option to go drug free for a certain length of time to prove yourself. It is a little nauseating, I am definitely with Richard on the "who are they" line of thinking, and also being able to see it from both sides. I would not want to see a kidney go to someone who is just not going to take any precautions whatsoever, but I don't like the nanny feeling one gets from the eval.

Cigarettes are just so dangerous that I can kind of see making people quit before a transplant. As far as I know, in addition to the cancer jbeany mentioned, smoking constricts your blood vessels which decreases blood flow through the kidney which is not good.  They won't even let a potential donor who smokes donate, perhaps because of the statistically poor prognosis for smokers.
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RichardMEL
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« Reply #4 on: July 18, 2010, 09:26:49 PM »

wow Cariad.. so what you're saying is that I should let myself go and turn into homer? I have a BMI of 23 and now I'm scared that I'll do myself in!!! Maybe that post transplant predisone munchies I hear so much about will help me out if I just camp out at maccas!!!  :rofl;

Good to hear I can have a glass of something post tx. I am not a G&T man, but vodka and something... make it so!!!
 :rofl;

I think at the end of the day if you do anything on moderation and not go overboard, and be mindful of the risks you face then you're, in general, going to be OK, or as OK as you can be. Too much of anything is bad, and I think if you take the appropriate precautions in terms of lifestyle and diet then why not indulge in what you want to indulge in? Hell, isn't that what life is about - having some enjoyment?!!
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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!
YLGuy
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« Reply #5 on: July 18, 2010, 10:19:44 PM »

I don't think pot offers any more particular risk to a dialysis patient than to a healthy person.  The big issue with it is that if it shows up on a drug test, the transplant teams will likely not accept you as a candidate.  Pot can do really terrible things to someone on immunosuppresants, and can contain a mold that may destroy a grafted organ.  With transplant ready organs so scarce, they are loath to give one to someone who might destroy theirs for a momentary buzz.
!
Transplant docs do look at the volume of alcohol use.  If you are an alcoholic, you don't qualify either.  Moderate consumption isn't really an issue with transplant meds or transplant success. 

If you don't qualify for the transplant for other reasons, and pot smoking is helping with the nausea or stress of your illness, then I think you should do what works for you.  Just don't get caught!  ::)

The mold issue can be bypassed.  Here in California pot is legal for medical use and there are tons of stores you can just go into and buy what they call edibles.  Cookies, caramel popcorn, chocolates, sodas...all containing THC.  You can even purchase cannibutter which is butter infused with the THC so you can go home and make what ever baked goods you want with it. 

Having been to over 100 Grateful Dead concerts I have smoked a joint or 2.  I have not in a long time between growing up, having custody of my children and now of course being on a transplant list.  In November Californians will be voting to legalize it for everyone.  I will be be voting for it.  The "war on drugs" is a joke and a huge waste of tax payers dollars when it comes to pot.  Legalize it, tax it and release the people in jail that are only there for possession of pot. 
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cariad
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« Reply #6 on: July 20, 2010, 08:10:43 PM »

wow Cariad.. so what you're saying is that I should let myself go and turn into homer? I have a BMI of 23 and now I'm scared that I'll do myself in!!! Maybe that post transplant predisone munchies I hear so much about will help me out if I just camp out at maccas!!!  :rofl;

Good to hear I can have a glass of something post tx. I am not a G&T man, but vodka and something... make it so!!!
 :rofl;

I think at the end of the day if you do anything on moderation and not go overboard, and be mindful of the risks you face then you're, in general, going to be OK, or as OK as you can be. Too much of anything is bad, and I think if you take the appropriate precautions in terms of lifestyle and diet then why not indulge in what you want to indulge in? Hell, isn't that what life is about - having some enjoyment?!!

You're not one for gin and tonics? My in-laws use any excuse to break out the gin and limes. I tried making one for my brother-in-law once and made it to my taste, not that of a Welshman. He walked out of his kitchen with it, took a taste, turned right around and said "Could you add that much gin again, and don't mention this conversation to my wife."

You're absolutely right with the indulgence idea. Life should be fun. Another patient phoned me the other day to ask me about the clinical trial, but she had never had a transplant before. She said that she supposed she would never go with her girlfriends to their annual Mexico trip again since it was so dangerous being on immunosuppressants. I listed a number of countries I have visited so far and told her "Cancel out on this year, but after that, go to Mexico! Live your life!"
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« Reply #7 on: July 20, 2010, 10:41:23 PM »

Richard, I can tell you from experience, the post transplant prednisone munchies are kinda fun.. *G*

My exboyfriend, who is still a close friend, tells a story about after my last transplant.  We were living together at the time.  The way he tells it is, he made me a toasted bacon and tomato sandwich and set it in front me.  He turned to get his own and sit at the table with me, but when he turned back, the plate was wobbling on the table and the sandwich was gone.. *LMAO*  of course, it wasn't gone that quick, but he likes to tell it that way.

When it comes to drugs and alcohol, I believe in the old adage, "everything in moderation."  as long as you're not overdoing it, I don't see a problem.  Smoking cigarettes is another thing, however.  I'm an ex smoker.  When my first transplant was failing, I was told that nicotine can raise cyclosporin levels, and that probably had a hand in killing that kidney.  I'm not sure how often cyclosporin is used these days, but it was all they had in those days.  I like telling the story of how I quit.  I was admitted into the hospital, I don't remember what for now, I was predialysis, so my levels were probably off.  Anyway, while I was there, they discovered that I had a contagious skin condition and I had to be put in isolation while it was treated.  I spent a week in an isolation room by myself.  I didn't even have any visitors because my family was in a different province.  I figured if I was going to quit, that would be the time.  I remember walking around the small room in circles for hours, with just a radio, no tv.  At least they let me keep the door open so I could talk to people walking by in the hallway.  It worked, though.  I went nutting for a week in a place I wasn't allowed out of, but once it was done, I didn't need cigarettes anymore, and I haven't had one since.
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« Reply #8 on: July 21, 2010, 12:05:05 AM »

wow that's a story Riki.

Hmm I have a friend who is really trying to quit and finding it ever so hard. Maybe if I lock her up alone in a small room for a week......  >:D >:D >:D >:D

..... I don't think I'd live to see if she quit or not!  :boxing;
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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 #9 on: July 21, 2010, 12:37:32 AM »

I think you have to be ready yourself, really ready, and not just saying you are because others want you to be ready.  It won't work otherwise.  And cutting down is better than going cold turkey, it's like weaning yourself off.  I didn't have a choice in the matter, they weren't going to let me out for a smoke.  At least, I was somewhere where if I went nuts, I wasn't going to hurt anyone but me, and if I hurt me, I was in the right place to get myself patched up. *L*
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RichardMEL
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« Reply #10 on: July 21, 2010, 12:51:36 AM »

It's really great that you quit!!!  :clap; :yahoo; :clap; :bow; :bow;

I am all for people making their own choices in life and doing what they want - I think that is a personal freedom we should all be able to enjoy; I don't think anyone should be able to tell anyone ELSE what they think and feel and want is wrong or bad (obviously there are limits to this - for example I'm not saying I think it's OK for people to do hard drugs, or have sex with the dead, or whatever....). I guess I mean that if a consenting adult wants to do whatver and it's not hurting anyone else, then hey knock your socks off....

but I personally come into conflict with my ideals when it comes to smoking because the more I see it (and smell it) the more disgusted I get (yes I'm turning into one of those rude old men who sits and abuses everyone else!). I think I get especially frustrated having to pass this smoking mob OUTSIDE THE HOSPITAL ENTRANCE - standing there right under a freakin no smoking sign puffing away and throwing their stinky butts all over the ground. YUCK! SELFISH!! And the hospital just won't do anything about it. I mean what's the point of the signs then? Sheesh. I had a girl I was seeing and she started smoking again(she had quit when I first met her) and frankly when she was smoking it got to the point where I didn't want her near me - I was just repulsed. I didn't want to kiss her, I didn't want her in bed next to me (and I'm a man who enjoys a woman in bed next to me!!!!  :rofl;). Yes, she was very considerate in that she would go outside of my place to smoke and all that, but still it would be in her hair, and clothes and stuff... and it just physically turned me off.

But like I say it conflicts with my own moral ideals because I really DO believe in a person's right to do this stuff if they want. I mean in theory if she wants to smoke 60 a day and slowly kill herself, well that's her choice.. but when it starts affecting me.. yuck.

So anyway... glad you quit - both for your health, your bank balance, and should I ever want to sit next to you someplace!!! :)  :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 #11 on: July 21, 2010, 01:14:43 AM »

After my mom quit a few years ago, I think she's close to 8 years now, she really didn't like the smell of smoke, especially the stale smoke that sticks to your hair and clothes.

My brother and I used to go to small illegal establishment, otherwise known as a bootlegger, to play cards and pool.  It's the only place I ever went to where they didn't turn the lights off and the music up loud, and they didn't mind if you took a coffee in with you instead of buying their booze.  The owner knew I didn't drink, so he used to give me pop for free.  For an illegal establishment, they were pretty respectable.  No drugs of any kind, at the time prescription pain pills were the rage, and no one underage.  Bascially, if the owner didn't know you, or someone he knew couldn't vouch for you, you didn't get in.

Anyway, Mom used to come pick me and Bro up after they closed at 11pm, and she always said that we smelled of smoke.  Bro is a smoker too, so he was worse, but it stuck to me too, cuz I was one of the few non smokers in the joint.

My best friend, the one that lives in Newark, is allergic to cigarette smoke, and has asthma to boot.  If Bro is ever to meet her, I'll be making sure he showers beforehand.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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gothiclovemonkey
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« Reply #12 on: July 21, 2010, 08:38:03 AM »

ya know, u dated a guy who was anti smoke, he knew i smoked when we got together. I, being the sweet gal that i am, new he didnt like it so i chose to just NOT SMOKE when we were together, if he was over for the evening, i didnt smoke. It was rough sometimes, if he was there for a couple days. But i did it out of respect. I think in the few years i dated the man, i had a few drags of friends cigs in front of him, immediately brushed my teeth sprayed my perfume, etc. This is the same man who told me he wanted an exclusive relationship with me, but hed never marry me, because he doesnt want the responsibility of being with a sick girl, and he doesnt want to be my sons father figure.... BUT he still wants to be with me exclusively... Does that make much sense?????
I learned pretty quickly, If u know i smoke, u know i am sick, and i have a child, if any of that bothers u, DONT ask me out DUH lol im NOT changing for anyone BUT myself and my son (who btw asked me to quit smoking, and i have cut down quite alot,and i intend to be smoke free by 2011)
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« Reply #13 on: July 21, 2010, 08:53:57 AM »

That's awesome.  My mom went to a support group to stop smoking.  I think what they did was cut down to 10 smokes a day.  At that point, they could quit completely and go on the nicotine patch.  It worked wonders for her.  She has smoked for about 30 years, and she's been smoke free for nearly 10 years now, I think.

My grandfather quit cold turkey the year I got sick, 1991.  I remember him coming to visit me in the hospital with a pocket full of cinnamon toothpicks to chew on. *L*  I think he was hypnotized a couple of times, but I don't remember for sure.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
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« Reply #14 on: July 21, 2010, 08:56:03 AM »

i know I had that massive smoking rant above, but I just wanted to say that in nio way would I expect someone to change who they were for me. I mean I think it would be pretty clear that I didn't like it if someone smoked, but by the same token I don't think it's for me to say oh you have to quit or something. I might say I think it's good for their health, but it has to be something you want to do for YOU. So absolutely take you as you are, or they're not the one for you - just as the girl who smoked wasn't the one for me (and no, not just because she smoked - I'm not THAT shallow!!).

hmm this has kind of diverted from the topic. My bad.... :oops;

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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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